Why Are Intestinal Transplants Such A Secret?

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I have been very saddened by a series of emails I have been receiving recently. Some of these messages have been left in the comments, but I felt that their stories deserve more attention.  Many people are suffering and dying because of the lack of information concerning intestinal transplants.  If you have never heard of intestinal transplants, don’t be embarrassed, as most doctors are unaware of them.  This is due to a lack of media attention on the procedure and the fact that most doctors feel no need to learn anything new after they graduate medical school – except what the pharmaceutical companies pay them to learn.

In a way, the comments and emails has had a positive side, because the information I have provided has found its way to some people in need. Unfortunately, it was far too late for one reader, Jan, whose courageous mother, Marlyn, lost her life in a battle with intestinal necrosis.  The doctors were refusing to remove the necrotic bowel for some unknown reason – most likely due to the fact that they had no knowledge of the success of intestinal transplants.  It is in her mother’s memory that I am writing this most important post that I hope you will take to heart.

The doctors here in Orlando had made a similar decision in my case following the first resection of bowels. I was left with three feet of jejunum, but the tissue was necrotic and killing me.  The surgeons refused to operate again.  Because they had no knowledge of intestinal transplants, they had decided that I could not live on less than three feet of small bowel and would be better off dead.  They made that quite clear.  Fortunately for me, I was transferred to another hospital for a vascular procedure and the surgeons there did remove the necrotic tissue, even in spite of the fact that they did not know of intestinal transplants either and also felt I would die without the three feet.  My wife was able to plead enough to guilt the doctors into doing the surgery, but they were reluctant and told her I would have a miserable existence and die a slow agonizing death.  They were wrong, but surgeons are making these decisions strictly based on the lack of publicity concerning the success of intestinal transplants.

Whenever I tell someone that I was the recipient of a full intestinal transplant, I rarely get what I call the “Shock And Awe Reply.”.  I had never heard of intestinal transplants and was very shocked to find out it was possible.  So by way of the “False Consensus Effect“, I thought that this would be the typical reaction to this news.  Instead, I am usually extended what I call,  “The Gesundheit Reaction”.   This is when the person reacts as though I had my tonsils taken out and say something like; “well I hope you feel better” or any other casual response as if someone sneezed.  It is not the type reaction I might expect if I were to tell them I was a cancer survivor – even though there are many more cancer survivors than intestinal transplant survivors.  Losing your intestines is considered a death sentence to more than 90% of the doctors in the U.S..

If I were to tell someone that there is a cure for cancer, the news would spread like wildfire, so why hasn’t the information concerning intestinal transplants?  It’s quite frustrating, but I am beginning to see why.  It seems that most people do not want to admit that they are unaware of a medical treatment.  Many people I have encountered since my transplant simply smile and nod as if they have known many people who have received intestinal transplants.  It is only if I specifically ask them, “have you ever heard of an intestinal transplant?”, that they will admit that they haven’t.  It’s either a lack of curiosity or too much pride that causes this complacency.

Most people have heard of transplants.  Kidneys, livers, heart and lung transplants have been possible for many decades, so most people assume that intestinal transplants are as common and this is very far from the truth.  Intestinal transplants are the rarest of organ transplants and its outcome was not very promising until recently.  The intestines presented a very large problem when it came to transplants.  The intestines are considered the largest lymphoid organ in the human body.  Because the intestines are a “dirty organ”, filled with thousands of different strains bacterial and fungal colonies, the human immune system reacts more rapidly and aggressively when defending the intestines than any other organ.  We had to develop this system or we couldn’t have survived as a species.

We eat a tremendous amount of bacteria and fungus everyday.  Much of these microbes colonize in our intestines and many of them are beneficial to our digestion and help us to break down foods that would otherwise be indigestible.  But any of these microbes can become lethal if they enter our bloodstream.  For this reason, the largest part of our immune system is located in our gut.  When bowels from a donor (with different DNA) are placed within the recipient, the immune system cannot tell the difference between the new bowel and the pathogens within, so it unleashes an attack on everything and ultimately destroys the new intestines.  A slow, horrible death is soon to follow.

The first intestinal transplants were attempted in the 1960s, with a 0% survival rate.  Even though there were great strides being made with kidneys, livers and even hearts and lungs over the next decade, all intestinal transplants attempted resulted in severe organ rejection and the patients died in a short period of time.  There really was no success in this type of transplant until the 1990s, when the transplant program at the University of Pittsburgh had some level of success by first transplanting some of the donor’s bone marrow into the recipient.  This made the recipient’s immune system accept the foreign organ better.  Some of the recipients survived for the first year or so, but overall survival rates were still dismal.  There was less than a 25% chance that a recipient would survive the first year after the transplant, so these transplants were only reserved as a desperate effort.  The patient had to literally be at the point that all of their access arteries were gone and they could no longer receive TPN and were waiting to die of dehydration before a transplant would be attempted.

It wasn’t until a drug called “Campath” was introduced to the process that the survival rate began to doubled.  No one really understands how Campath works to make the body accept the organ – it just does.  I did not have to go through the painful process of a bone marrow transplant prior to the intestinal transplant.  Because I was given an IV infusion of Campath, my body accepted the organ and I had no signs of rejection.

Dr. Andreas Tzakis (pictured on the left), the surgeon that performed my transplant, was working at the University of Pittsburgh at the time of the first successful intestinal transplants.  He was the first doctor to use Campath.  There is little doubt that I had the best surgeon that you could hope for working on me.  Dr. Tzakis has performed more transplants than any surgeon in the world.  He has performed over 2,000 liver transplants and has the highest record of success in intestinal and multivisceral transplants.  Dr. Tzakis was actually successful at first transplanting a baboon liver into a human.

There are so few hospitals that can perform intestinal transplants, that I was able to get an organ after only 6 days on the transplant list.  Most people in need of a kidney can be on the list for years, because kidney transplants are so common and nearly every hospital can perform them.  A kidney transplant is less than a week stay in the hospital at Jackson Memorial.  But most intestinal and multivisceral recipients can spend up to 6 months in the hospital recovering or longer.

There is a huge difference in the severity of these transplants.  A liver transplant can still carry great risks, but no other transplant is as rare or complicated as an intestinal or multivisceral transplant (which include intestines).  Less than 3,000 intestinal transplants have ever been performed and since few people survived them in the first 20 years they were attempted, there are probably less than 1,500 survivors walking around today.  So, the chance that you have met someone else who had an intestinal transplant is highly unlikely.  I wish people would stop acting as if they were aware of them, when 90% of doctors don’t know that they are possible and that includes specialists in GI medicine.  Not one gastroenterologist that worked on me here in Orlando had heard of these transplants.

I believe that this is the explanation for the “The Gesundheit Reaction”.  Most people feel a transplant is a transplant, so it’s not a big deal.  If you were to ask most doctors, they would tell you that intestinal transplants are impossible and no one survives them.  Many people are going to die this year based on that information from their doctor.  When Jan first contacted me, her mother was still alive, but her bowels were necrotic and she was dying.  The doctors were refusing to remove the dying bowels.  I wrote back and told her that the doctors were not aware of transplants and had made the decision that she would be better off dead – just like they did with me.  I provided her with the contact information to the doctors in Miami that performed my transplant.

Jan wrote back the next day and told me she had relayed my story to the doctor and he replied something like, “yeah,it  would be nice to believe in magic.”.  Asshole!  This is the arrogance of most doctors.  Does he think I’m making this shit up?  I am living proof that they are successful and it wouldn’t take him 15 minutes of research on the internet to confirm that this procedure is not only possible, but hundreds of people will be saved by intestinal transplants this year.  Even more could be saved, if the news about them could spread.

I have tried to get media attention on this life-saving procedure, but these type of things are never sexy enough for the mainstream media unless a celebrity has been afflicted.  Had a celebrity ever needed an intestinal transplant, it would suddenly become a national crisis and everyone would know about them from the countless reports following the celebrity’s recovery.  So far, no celebrity has needed an intestinal transplant, so the fact they exist has remained a secret.  Can we wait until a celebrity needs an intestinal transplant to make this procedure common knowledge?  In her last email, Jan not only informed me of her mother’s unfortunate passing, but also told me of a 34-year-old man who also lost his life at the same hospital, because the doctors did not know of these transplants.

If you read of my story, please do not keep this information to yourself.  If you believe that my story is common and that doctors know what to do when someone loses their intestines – you are mistaken.  I implore you to spread the word to as many people as possible.  Email others, tweet about it, blog about it, mention it on Facebook or anyway you can think of to let everyone know that this procedure exists – it could save thousands, if not tens of thousands of lives.  According to the statistic that Jan left in the comments, over 145,000 people are dependent on TPN.  Many of these people will die, because a human can not live on TPN indefinitely . If you read my post on “The Effects Of Sugar On Arteries” and “The Truth About Soy”, you will understand how TPN will keep someone alive, but is also killing them at the same time.  People requiring full-time TPN will usually die within two years.

These people will die never knowing that there was a realistic option to live out their natural life.  Living on TPN is a very poor quality of life – I know because I lived that way for more than six months.  Besides the knowledge that it would ultimately destroy my liver and arteries, I suffered two systemic infections that nearly killed me.  TPN is high in sugar and feeds both bacteria and fungus.  The human body will not defend a plastic catheter, so the lines colonize with pathogens quickly – pathogens that are then flushed through the heart with the TPN infusions.  An intestinal transplant is the only realistic long-term option for someone suffering with Short Bowel Syndrome.

These deaths are not just limited to adults and elderly.  When I was at Jackson Memorial Hospital, there was an entire floor dedicated to the pediatric intestinal and multivisceral transplants.  There were more children receiving these transplants than adults.  There are children who are born with a birth defect known as “Short Bowel Syndrome”.   Some are born without much of their GI tract and some are born with their intestines outside of their body, which die and have to be removed.  I seen toddlers who were getting full multivisceral (multi-organ) transplants.  I met one young woman who was 18 years old when I met her, but was born without intestines and received a multivisceral transplant at the age of 8.  Without the transplant, she would have never lived to the age of eighteen and she is still going.

I really don’t get a tremendous amount of traffic at this site, so it is up to everyone to spread this vital information – information that could have saved Jan’s mother’s life or the 34-year-old man, had they found my site sooner.  I have tried to contact a variety of talk shows, such as Ellen and Oprah, with absolutely no response.  One letter rarely gets a response from these shows.  If you have read my story and were amazed that someone could survive a full intestinal transplant (both small and large), please take the time to write a letter or email to some of these talk shows about it.  Maybe if they were to receive a volume of letters they would feel this warrants some media attention.  Feel free to send a link to my story (found here).  I know of several other intestinal and multivisceral transplant survivors that would be willing to share their stories.

Even smaller internet venues seem to scoff at this story.  I had contacted Jimmy Moore, who first agreed to interview me on his podcast over 6 months ago, but never followed up on his promise.  I guess the 150th interview with someone who lost 20 pounds on a low carb diet is a more compelling account to Jimmy than someone who survived an intestinal transplant.  He may be underestimating his listening audience – or maybe not.  It’s sad to believe that another Tom Naughton interview about “Fat Head” the movie, could be more vitally important than the news about someone left for dead being resurrected.  News that could have easily saved a life, like Marlyn’s, if we could get the information out there.   Good luck Jimmy – hope you never need a transplant.  I guess I’m not a big enough internet star to warrant his time.  Funny how even a small amount of internet fame can go to someone’s head real fast and to the point where they only want to suck up to other celebrities.

It’s this starfucker mentality that keeps this type of information in the dark.  Because I’m not famous, my story is irrelevant, because after all, only celebrities suffer, feel pain and need our help.  Only a celebrity can be the arbiter of what the rest of us should be concerned about.  Global warming myths and animal rights far out-trump the fact that people of little fame and wealth are dying unnecessarily.   None of the doctors, in two separate hospitals here in Orlando, had heard of intestinal transplants.  As much as we’d like to believe that it is their responsibility to provide that information, they have chosen to ignore the call, so it is up to the rest of us.

It was my wife’s tenacity and exhaustive research that led us to Jackson Memorial Hospital in Miami (one of a handful of hospitals in the world that have successfully performed this procedure).  Most of the doctors here told me I was a fool for considering undergoing these transplants and that I had a small chance of survival.  Actually, Jackson Memorial has over a 65% first year survival rate, so the odds were in my favor.  I received my transplant over 2 years ago and am doing well – the doctors were giving me less than 2 years on the TPN, so I would have already been dead by now had I not have opted for the transplant.  The fact that I suffered two deadly systemic infections during the time I was on TPN would certainly support the claim that I would have been dead by now.  I was only approved for the transplant because I had nearly died twice from sepsis, due to the TPN line colonizing pathogens.

The longest living intestinal transplant patient is a woman who had her transplant over 20 years ago – and the medication and post operative treatments have been greatly improved since her operation, so my chances of living more than 20 years are better than hers.  She is still alive and well.  The young woman I met at Jackson in Miami, who was born without intestines, has now been alive for more than 11 years – that’s 11 years more than she would have had without the transplant.  She just graduated High School this year – amazing.  Some other 8-year-old will not be so lucky and never see their graduation without your help.  Any child living on TPN will die without a transplant – a senseless death strictly based on the doctors lack of knowledge about the success of the intestinal transplant programs at several hospitals across the United States.  Here is a list of the hospitals that I know of that have successful intestinal and multivisceral transplant programs.

University of Pittsburgh   Pittsburgh Pennsylvania

Jackson Memorial Hospital  Miami, Florida

Cleveland Clinic  Cleveland, Ohio

Georgetown University Hospital  Washington D.C.

UCLA Hospital  Los Angeles, California

University of Nebraska   Omaha, Nebraska

There may be others, but these programs have a high survival rate, especially The University of Pittsburgh, Jackson Memorial (in Miami) and the Cleveland Clinic.  the University of Pittsburgh is where the first successful intestinal transplants occurred.  Dr. Andreas Tzakis was one of the pioneers at the time and was working at the University of Pittsburgh.  He has since established the intestinal and multivisceral transplant program at Jackson Memorial Hospital in Miami, so their program is equally as good as Pittsburgh.

It is easy to assume that the doctors know about this procedure and inform TPN patients of this option, but that is not the reality.  Somehow, this life-saving procedure remains a secret to most doctors and hospitals.  If you are reading this, you now know of a medical procedure that few doctors know are possible.  It would seem irresponsible for doctors treating TPN patients, especially those who are failing to thrive, not to know about intestinal transplants, but for some reason, that’s the reality.  This is why I simply shake my head when people believe that their doctor is up on the latest research concerning any disease and why doctors continue to spout outdated advice concerning heart disease, diabetes or any other modern disease.  Never trust that your doctor has all the answers.  I know that many of you feel that’s what you pay the doctor for and just look to them for answers – that’ll get you dead!   You have to invest your own time in doing the research concerning your health.  If my story, Jan’s mother’s story or the 34-year-old man’s story is not enough to convince you not to place all your options at the discretion of your doctor, then you could well end up deceased long before your time.

The doctors were fine with letting me die on TPN, believing there was nothing more they could do.  It was my wife’s relentless research that discovered that the doctors were wrong or I wouldn’t be writing this post.  Not one of those doctors invested any time into doing the research. Even after my wife made the contacts in Miami, the doctors that were treating me attempted to talk us out of undergoing the transplant.  While we were in Miami, the husband of the nurse manager told us of a dialysis clinic where the doctors hand out published pamphlets scaring patients away from getting kidney transplants, by exploiting all of the rare risks.  Their motivation was strictly money.  There is more money to be made by daily dialysis treatments, than curing the disease with a transplant.  At over $200.00 a bag, TPN is also very profitable to the pharmaceutical companies, because a person with no intestines needs a bag everyday.  While I was on TPN, the cost of medication, TPN and hydration infusions were costing over $500.00 per day!  You can see why there is a motivation to keep those people on TPN.

Let’s not wait until your favorite pop star, actor or politician needs a transplant to finally consider it interesting enough to tweet about it.  You could help save countless lives by simply spreading my story.  By all accounts, I shouldn’t be alive.  I am the closest thing to a walking miracle that you will find.  Jan lost her mother due to complacency, please don’t let the next person or child on TPN die because this subject is not sexy enough to pass on.  The only way that the nightmare I lived through will have any reason is if it can help someone else who is dying on TPN.  Don’t casually dismiss my story and think that this could never happen to you.  You could be in an accident tomorrow and lose your intestines or you could be injured by a colonoscopy, like I was, and require an intestinal transplant to live.  I am not selling anything at my site and I make no money from links sent out to my story – it’s about saving lives.  I would love to see more traffic come to my story, so I will know that the word is spreading and lives will be spared.

This deed will only cost you a few minutes of your Twitter time, but could certainly save a life or two. Trust me when I tell you that many doctors do not know about this procedure and are letting TPN patients die prematurely.  Just take a minute and Tweet my story around.  Better yet, take a minute to go to any talk show’s website and shoot off an email with a link to my story.  Making these transplants common knowledge will save lives of both adults and children.

Thanks,

Wolverine


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121 Responses to Why Are Intestinal Transplants Such A Secret?
  1. Bob Johnston
    June 13, 2012 | 6:27 pm

    I just posted this to facebook, hopefully my friends will pass it along.

    • Wolverine
      June 13, 2012 | 10:05 pm

      Thanks, Bob. I really appreciate your effort. Hopefully, we can save a life or two. I was so extremely heartbroken when I received the news that those people had died in the Chicago hospital, without ever knowing that an intestinal transplant was an option. I had really hoped that I had gotten her the information in time, but unfortunately it was too late. I hope to never hear that again. Thanks again for your help.

      • Frank
        July 21, 2015 | 10:52 am

        I received my small bowl transplant at university of il at Chicago hospital. My surgeon is Dr. Benenedetti.

        • Wolverine
          July 24, 2015 | 1:58 am

          That’s awesome Frank! I am not familar with the program there, nor Dr. Benendetti, but I’m sure they do fine work being located in the north central. There are so many great transplant hospitals in that region like, the Cleveland Clinic and The University of Pittsburg, two of the hosoptals who have been performing intestinal transplant the longest (in fact Pittsburgh was where the first successful small bowel transplant was done in the very early 1990s).

          I hope that you are doing well. How long ago was your transplant? Are you happy that you made the decision to have a transplant rather than life-long TPN? I wish I would have known that a hospital in Chicago was successfully performing intestinal transplants a few years ago when Jan wrote me about her mother. They were in a hospital in Chicago aso. Having a facility that close might have changed the minds of her doctors and they may have spared her life that night, rather than simply watch her die.

          I really apprieciate you sharing your story and informing me of one other hosital which has this life-saving operation. One I didn’t know about before you wrote here. Dr. Kareem abu-Elmagd and Dr. Andreas Tzakis, the two pioneers of the intestinal transplant, have spent many years educating yuong doctors to continue and improve on this operation.

          They have been tireless in traveling from hospital to hospital arouund the globe to help set up intestinal transplant wards in many hospitals. Many of the youger surgeons trained by one or both of these two great men have gone forward to make many improvements, elevating suvival numabers and speeding up the recovey times.

          Let me know how you progress from here Frank, if you don’t mind, either throgh comments here or private emails (by using the contact page. I used to write the address in comment replies and was drowned in the deuge of spam mail a got due to internet spiders which scan bords for potsed email addresses) I would be very interested in following your progression and any inside information you might wish to share, like diet, activities and any supplements or other unique things that you believe have heled you improve your condition going forward.

          Thanks again for writing, I am always overjoyed to hear another successful transplant story, especially bowel transplants. The best of wishes for you and you family!

          • Maxine Kell
            May 31, 2016 | 7:42 pm

            I am a Small Bowel Transplant recipient which was performed by Dr Kareem Abu Elmagd at UPMC 5/15/07. The article is correct in that people look at you as if you are crazy. When you mention you had a transplant they automatically assume kidney. The reaction is always the same in that people say they can do that. I celebrate my life everyday but at the same time I live, I don’t dwell. My transplant was caused by adhesions that wrapped around my bowel cutting off the blood supply. This was from prior abdomenal surgeries. Thank God I got out to Pittsburgh. It’s a story that I find necessary to share.

          • Wolverine
            June 3, 2016 | 6:35 pm

            Hi Maxine. Thank you for writing and sharing your story. Doctor Kareem is now working at the Cleveland Clinic, right? He and Doctor Tzakis were both working at Pittsburg in the early 90s when the first successful intestinal transplants were performed. Doctor Tzakis had moved to Jackson Memorial Hospital in Miami and performed my transplant in 2010. He is also at the Cleveland Clinic at this time.

            It really does seem to be difficult for people to wrap their heads around the idea of a total bowel transplant, even doctors. At the time I had lost my intestines, in 2010, not many doctors had heard of an intestinal transplant. Even after my wife and I had made contact with the surgeons in Miami and were discussing the possibility of a transplant, all of the doctors at the hospitals here in Orlando kept trying to talk me out of it because they didn’t believe that the surgery was survivable and that I was just subjecting myself to being a guinea pig for some experimental surgery.

            Continue to share your story as much as you can, because it is only through our “word of mouth” endorsement that most people will learn of this operation, since the mainstream media never gives it much coverage. I published this blog hoping to help people who lost their intestines and might be surfing the internet for information on an intestinal transplant. In the last 6 years, I have had more than a dozen people contact me who were going through the same type of thing and had encountered doctors who were telling them an intestinal transplant was not possible. I have been able to help many of them get in touch with surgeon at the closest hospital to where they were located. I tell my wife all the time how much this has helps me give some purpose to everything I have gone through. I am sure that you have been through many similar nightmares.

            Once you can convince people that an intestinal transplant is possible (and not just a colon transplant, which is what most people assume), they seem to then assume that it goes as quick and smoothly as most kidney transplants do. Few people can even imagine the horrors that most intestinal transplant recipient have to go through. I have met many other recipients over the years and all of them have similar stories of septic shock and other crashes which nearly took them. The five other patients who got intestinal transplants at Jackson the same year I did, all suffered many horrible circumstances. In fact, all 5 of the other patients have since passed away. Most in the first year, but the last 2 have died over the last 5 years.

            I am happy to hear that you are still doing well so many years out. I thank you for stopping by my blog and sharing your mazing story with me and my readers. I hope you continue on with success in the years to come.

  2. Ray Aragon
    June 24, 2012 | 1:01 pm

    I have Fathead and a couple of other paleo pages I read on Facebook. Maybe the other people will help pass it on. Just posted this article.

    • Wolverine
      June 24, 2012 | 5:09 pm

      Thanks Ray, This will have to be a grass roots thing. The media will not cover this because it would step on the toes of their biggest advertiser – the pharmaceutical companies. They make a tremendous amount of money keeping people on TPN for years before they die. TPN is a treatment; a transplant is a cure. TPN can cost over $200.00 per day, so you can see the motivation to keep people on it. But, TPN is also slowly killing those that live on it and is a miserable existence.
      Intestinal transplants are kept secret even to doctors, it is not taught in medical school, even though they’ve been successful for more than 20 years. There will be plenty of people die this year on TPN, who could have been saved by a transplant – strictly because their doctors have not been taught that they are possible.

  3. Jim
    August 9, 2012 | 11:23 am

    I just came across this while sitting in Georgetown University Hospital where my 33 year old wife is about to enter the OR for a mutliviseral transplant. She will receive a pancreas, stomach and intestines. My wife suffers from Gardniers Syndrome (FAP) which causes large Desmoid tumors to form in the abdominal area. She hashave 6 surgeries to remove tumors over the last 10 years.

    We just found out about this transplant option 6 months ago.

    Keep spreading the word!

    Best,

    Jim

    • Wolverine
      August 9, 2012 | 1:18 pm

      Hi Jim, thanks for writing and I’m sorry to hear about your wife’s condition, but happy to know that you found out about the procedure before it was too late. I can’t tell you how many sad emails I receive from people who found out about these transplants too late for their loved ones.

      I am familiar with Gardner’s Syndrome, because the woman assigned to me as a mentor prior to my transplant suffered from Gardner’s and had lost her mother to the disease several years earlier. It is a congenital illness, so you may want to consider that if you have any children or plan to have any in the future. This woman also had a new stomach, pancreas, spleen, duodenum, large and small intestines transplanted over 5 years ago and she is doing great. She now leads a very normal and productive life and to look at her, you would never know that she went through such a dramatic procedure, she looks very healthy. She was also 33 years old when she underwent the transplant at Jackson Memorial in Miami.

      It will only be through people like us, who have been saved by this operation, that can bring more awareness to it. The media is completely uninterested in giving it any time and medical schools obviously don’t make doctors aware of it.

      Keep me appraised of her condition, if you don’t mind. You can email me from the contact page. It is up to us to spread the word and help save lives. Thanks again for writing.

      • Lou Lou
        June 14, 2015 | 11:46 pm

        Wolverine, great blog, thank you so much for sharing your story. I have known about intestine transplants for a few years, but not anyone who had one. My husband had a kidney transplant in 2013, I am very involved in the “Donate Life” organization. Very interested in the woman’s story, or anyone’s who had a complete GI transplant (actually not complete, as the mouth, tongue, esophagus are the beginning of the GI tract,) so from stomach downward due to either FAP or Gardeners. Thanks, appreciate this, trying to research this, I love a child whose mom recently died from C-R cancer, unfortunately this child has polyps already in his GI tract. Thanks again, ML.

        • Wolverine
          June 22, 2015 | 5:24 pm

          Hi Lou. Thanks for writing and I apologize for the delay in replying. My father has been extremely ill. Yes, the woman who was assigned to me as a mentor (the doctors like to put each new patient in contact with one of us who have been through it and survived a few years) had Gardner’s Disease. She is still alive and doing well and I believe is over eight years out since her transplant. Her mother had died from the same disease at a very young age (early 40s), which is why they began to monitor her for the disease at a young age.

          In many ways, her transplant seemed much less traumatic to her overall body, because it was all done in one operation. She was healthy at the time and in fact, drove herself from Orlando to Miami for the operation. She recovered very quickly, because her health had not been beaten down so far as those who had lost all of their bowels through multiple surgeries and lived on TPN for a period of time. TPN nutrition is in no way equal to eating a good diet, so those on full-time TPN (that would require a transplant) are typically underweight and extremely weak (especially after surviving several line infections), so then surviving a transplant is quite a challenge.

          This young person you are speaking of would probably have a transplant done in one operation also. So far, they can transplant every organ from the esophagus to the rectum. One young lady had lost the rectum due to Crohn’s Disease, so she was not able to have a large bowel transplanted and lives with an ostomy. The rectum has far too many nerves within it; these are important to give us continence. Location behind the bladder may also make that impossible to transplant. I know that the section of colon I was given passes in front of the bladder rather than behind it. It attaches to the rectum just below the bladder.

          I am sadden to hear about this young person’s condition, but at least glad that there is now an option. Before transplants, someone in that condition would just have a short life. I met a young lady who was born without intestines and had a multi-visceral transplant (including small & large bowels, stomach, liver, pancreas and spleen) and she was 18 years old when I met her and graduating high school. That was over 5 years ago, so she is over 23 years old now. Had she been born 20 years earlier, she would have never lived to see adulthood. Any information I can provide to help out this young person or their parent or guardians, especially towards getting a transplant, please write and let me know and I will do what I can.

  4. Leda Papa
    September 2, 2012 | 10:40 am

    Dear Wolverine, I came across your site today and I was taken back by how it mirrored my own feeling and personal circumstances. I am a 47 year old Italian lady with a history of intestinal pseudo-obstruction and gastroparesis and I am about to move to Cleveland where Dr.Tzakis will perform a multi visceral transplant. As I totally share with you the need for better awareness of intestinal transplantation, I would appreciate if we could get in touch to share our experiences and work out a way to improve information on this matter.

    • Wolverine
      September 2, 2012 | 3:37 pm

      Hi Leda. I am sorry to hear about your illness. You couldn’t have a better surgeon for a multi-visceral transplant than Andeas Tzakis. He performed my surgery over two years ago and gave me my life back after living six months on TPN. He has performed more transplants than any surgeon on the planet. There are many people who die each year simply because their doctors are unaware of the success of intestinal transplants.

      You can always get in touch with me by sending an email from my contact page. From there I can provide you with my other contact information. I will be happy to stay in touch with you and work together to get more attention on this little known procedure that can save so many lives.

  5. Lisa
    September 27, 2012 | 4:02 pm

    Can you contact me? My daughter has had 16 abdominal surgeries, etc. . has a disease now they said caused from multiple rounds of sepsis and multiple abdominal surgeries. In 2010, if what they did didnt work were going to discuss transplant. She’s been in hospital last 3 mos again, TPN dependent, another bowel obstruction. Her disease is on the mesenteric wall that’s done nothing but kill her bowel and colon, etc. I brought up transplant again yesterday and two colorectal surgeons dismissed it…well, her regular ped surgeon brought it up in 2010 as a possible future option. She’s about there. SHe’s living inpatient. Pain too high, nausea, vomiting still, TPN dependent AGAIN!!! Grr…two colorectals vetoed it yesterday, I’m an idiot for bringing it up, etc. Do you know if mesenteric wall can come with the small bowel? ANy help? Thx so much!

    • Wolverine
      September 27, 2012 | 7:00 pm

      Hi Lisa. I am so glad that you contacted me and didn’t simply take the recommendation of the doctors there. Many doctors here in Orlando also told me that intestinal transplants were not possible. The multivisceral transplant surgeons are in a league of their own and take on cases that are impossible for the average surgeon. Don’t expect any help from her doctors in getting her a transplant. Not one of the doctors in Orlando would help us arrange for the transplant, because they didn’t believe they were possible. My wife did all of the work, including writing a U.S. Senator (Bill Nelson) and getting him to send a letter to the state medical board of Florida to approve my transplant – my wife is a remarkable woman.

    • Tee
      December 30, 2012 | 3:47 am

      Lisa,
      You mentioned your daughter has alot of nausea and vomiting. Do you know what is causing this? My sister recently started having these symptons and the doctors don’t know why. Any insight appreciated

      • Lisa
        December 30, 2012 | 2:24 pm

        She had an add’l 17th surgery in Oct. Was in hospital June – Nov. 2. Has another ostomy again. 🙁 She throws up all the time due to obstructions, etc.

  6. carol bishop-stern
    April 14, 2013 | 7:23 pm

    my husband has had crohn’s for over 25 year’s now.
    he has been on tpn for the last 2 1/2 years and has been in the hospital for most of that time I was 2 days from taking home on hospice. and now we are at the cleveland clinic hoping for a transplant
    if only we knew about this 2 years ago my husband would not have had to endure so much pain

    • Wolverine
      April 15, 2013 | 1:52 am

      I am sorry to hear about your husband’s suffering. I know two women who suffered Crohn’s, and it is a very debilitating and painful disease. I hope he gets a transplant very soon.

      Unlike with kidneys and livers, intestines are usually very fast to get. Because so many hospitals can do kidney and liver transplants, there is a high demand for the organs, so people can be on the list for months or years, but so few hospitals perform intestinal, that there is a low demand for the organ – I received my organ only six days after being listed.

      Is Dr. Tzakis going to perform the transplant? Last I heard, he was working out of the Cleveland Clinic. He performed my transplant while in Jackson Memorial in Miami and is one of the best transplant surgeons in the world. Either way, the Cleveland Clinic is a fantastic transplant program, so he couldn’t be in better hands.

      I hope you can keep me appraised of his condition and how the transplant progresses. You can email me privately from the contact page. I hope it all goes well and soon. After the transplant, he will no longer require TPN and all of the problems that go with it. I had to spend all of the time I was on TPN in the hospital also, mostly because of back to back systemic infections caused by the TPN. I was in septic shock twice.

      I’m sorry that he had to suffer the last couple of years, because no one knew about the transplants. Better late than never. A couple of people who have contacted me only found out about the transplants after their loved one had passed away. I wish more doctors knew about the success of intestinal transplants, because people are suffering and dying simply because their doctors do not know about intestinal or multivisceral transplants.

      Thanks for contacting me. I am excited about your husband getting a second chance at a normal quality of life, as I did. If there is anything I can do to help, let me know.

  7. Alexander Lars Robinson
    June 11, 2013 | 1:35 am

    I just found this site during a search about meat-heavy diets (I seem to get unpleasant digestion problems from nearly everything else; not quite what I was looking for, but a great find regardless). After reading quite a few of the articles, I must say that I am astounded that today is the first I have ever heard of intestinal transplants, despite the obvious point that if we can transplant hearts, lungs, kidneys, and livers, an intestinal tract should be a no-brainer.

    That this cult-of-personality-like health industry gets away with so much unethical and unthinking disregard, while people squabble fervently over sociopolitical trifles that will have no impact on their lives, is frightening (to put it mildly). It disturbs me to the point that living in Canada, with its government controlled health-care, gives me no solace. The primary system for distributing the health-care, and its downsides, may be different, but the culture is not, and the problems risk becoming similar.

    On a more optimistic note: while reading, I’ve wondered how feasible it would be to use alternating cycles of weak immune action followed by stem-cell infusions to very slowly yet completely replace a transplanted organ with one’s own cells. Something similar was done with a larynx prior to transplant once.

    And now I’ve remembered why this has barely been looked into yet. Sigh.

    Anyways, thank you for sharing you experiences with the world (it needs all the logical thought it can get; severe deficiency). I have learned a great deal in the last few hours, much of which I had no inkling of beforehand. Again, thank you.

    • Alexander Lars Robinson
      June 11, 2013 | 4:49 am

      Just finished reading this article. The complications posed by the intestine for transplant surgery are interesting, but it seems criminal that a life-saving operation nearly as old as I am would have gone unnoticed by the medical community. With the attitude doctors often have though, I can see it happening.

      I once had a dentist try to fear-monger me into having my wisdom teeth removed. Three of them have insufficient space to fully expose themselves to air, while one is harmlessly impacted into the crown of its neighbour. The dentist claimed I would be in horrible agony from infections, lesions, and dead teeth by the age of 22. I am now 26, and have had no problems of the sort. The dentist also refused to even contemplate the notion that there were ways to clean out particles collecting in odd places around the teeth, despite research showing that there were, and despite them being very easy to imagine.

      Of course, a few teeth are nothing compared to what you have gone through, but that just makes the prevalence of the attitude and disregard for the possibility of a better treatment even more appalling.

      • Wolverine
        June 15, 2013 | 1:54 am

        I was also shocked to find out that what the doctors were telling us (that there was no hope and intestinal transplant did not exist), was not the truth. They not only existed, but survival rates were quite high for those who got them in time.

        I believe that the problem goes much further up than the doctors. Sure, if doctors were as interested in their patient’s well-being as their golf game, they might do personal research and discover these contemporary advancements (my wife found the answer on the Internet, so you’d think that doctors would also), but the treatment has been successfully performed for long enough now that it should be taught in medical schools, but obviously isn’t – even to those who are studying to be a gastroenterologist! I had several gastroenterologist tell me it was impossible.

        Upon investigation, it appeared that there are certain entities that do not wish for it to be taught. I cannot specifically point the finger, but I have some obvious suspect. “Follow the money”, is the easiest way to form a good hypothesis. Given that pharmaceutical companies and TPN clinics have the most to gain, I would say that is a good place to start.

        There is little to no fundraising nor charities for short bowel syndrome. All of the research in that field, which has led to the possibilities awarded from intestinal and multivisceral transplants, have come to fruition with very little funding. That is a shame, because it saves many hopeless lives and could save so many more if it was well known.

        There is so much money raised for diseases, where we see so little progress being made (those have become businesses of themselves and very little funds actually go towards research) and yet that same type funding would actually see real results in the world of transplants, but they are so underfunded and some of the programs have been shut down due to lack of funding.

        But, it is very political indeed. Being one of less than two thousand survivors of a full intestinal transplant, you’d think someone in the media would be interested in following such a story – but, nothing could be further from the truth. No one in any form of media was interested in these stories of survival – Why? Because many of those in need of a transplant were first victims of the medical industry. We were told that most of the women lost their intestines to botched bariatric surgery and most of the men lost theirs to bad liposuction surgery – all medical procedures. This has to be the main reason the media is not interested in those stories. The international news media has been owned by the advertising dollars for many decades now and would do nothing to damage the reputation of these money-making drugs or procedures.

        If most of the victims were people who lost their guts to disease, the media would be all over it. Unfortunately for us organ recipients, we are mostly victims of the medical industry (because I lost my bowels to a colonoscopy, no one in the media would tell that story), so no light will be shined on these stories of survival.

        Thanks for the comment. Best wishes.

    • Wolverine
      June 15, 2013 | 2:48 am

      Thanks for your comment, Alexander. Actually, the intestinal transplant was evidently not a no-brainer for medical research, so don’t feel bad about not knowing about them. There are very few hospitals that can still perform them and the intestines was the most recent organ able to be safely transplanted (only since 2001). Not only were problems presented by the extremely complex nerve, biliary and muscle re-attachment, but there was an aggressive and accelerated immune response that was difficult to overcome.

      It would seem to make sense, from an evolutionary perspective, that the body would evolve a more aggressive immune response to those organs that we receive food and air through, because they are the quickest point of entry for any pathogens from outside world. I had never heard of a successful intestinal transplant and neither had any of the doctors that administered to me while in three different hospitals in Orlando.

      Intestinal transplant we’re first attempted at the same time that all of the other organs had been experimented with for transplantation (in the 1960s and only on test animals). Even after succeeding with kidneys, livers, heart and even lungs, the intestines remained illusive until the late 1980s. 1989 was the first intestinal transplant patient to be released from the hospital, but he died less than 180 days afterwards.

      Many people died over the following years that the procedure was attempted, so it was only reserved for those facing certain death without some drastic action. None still survived them for more than a week or fees days.

      The first successful attempts required that some of the donor’s bone marrow be first implanted into the recipient prior to the transplant in an attempt to smooth the transition and slow the immune response, but survival rates were still below 40 %, even in the 1990s.

      It wasn’t until 2001, that the drug Campath was introduced to the procedure and survival rates more than doubled and continued to improve. The surgeon who performed my transplant, Dr. Andreas Tzakis, was one of the pioneers of the intestinal and multivisceral transplants and one of the first to introduce Campath prior to the operation. Campath slowed the rejection response and allowed a period of time for the body to accept the new organs. Because of this, I did not have to undergo a bone marrow transplant before the operation and was at far less of a risk than those before.

      There are many kidney and liver transplant recipients who no longer have need for life-long Tacrolimus (Prograf), because of the reasons you have mentioned here. Especially in kidneys, which are a small enough organ for the recipient to ultimately replace all of the donor’s cells.

      Though Dr. Tzakis hopes to one day make this possible for intestinal and multivisceral patients, at this time it is not. I guess the organ is just too large, with far too many cells to turn around within one’s lifetime. There are many children receiving these transplants, who may one day not need the anti-rejection medication later in their life. This would be great for those patients, because it would lower their infection and cancer risks throughout their lives.

      Dr. Tzakis told me at my last clinic that only about half of the liver patients have been able to be removed from the anti-rejection medication – he said the reason for this is not yet understood. At this time, they simply remove them from the Prograf and then watch them closely for early signs of organ rejection, if they show symptoms, they are immediately placed back on it. They have found no genetic markers or test that would signify which patients will accept or reject the organ without immunosuppressant agents yet.

      I believe that the state of modern medicine is at the point it is because the average person does not understand that cures for modern diseases are not in the best interest to those in the medical industry, especially the corporate entities, who have found it far more profitable to treat a disease for life, rather than cure it. As long as the mass of the population is happy with the treatments, there will be little motivation to find cures nor safer and less invasive procedures.

      Chemotherapy is a treatment that is nearly a century old, yet we are still using it as the main cancer treatment today – because it is profitable, not the best we could potentially do to cure cancer.

      Screening procedures, like mammograms and colonoscopies are dangerous procedures and probably cause more harm than good to most patients. Ionic radiation is a cancer causing phenomenon, so it seems a little insane to use as the tool to diagnose and treat cancer? But, we live in a world where an alarming number of people still believe in ghosts, aliens (fairies), astrology, psychics and all other types of superstition – so it is not a very daunting task for these corporations to sell most people on snake-oil treatments – even in the light of no statistically significant results to brag of.

      I fear we are headed in the wrong direction in the U.S. with state run medical insurance. The U.S. has leaped beyond your nation and the U.K. and opted for a much more tyrannical form of government health care by mandating that every citizen purchase a government distributed policy, underwritten by private corporations! My fear is that, if they can mandate the purchase of a product or service, how long before they begin to mandate treatments?

      This is a far graver health option than you presently face. I believe that whatever some appointed stooge, called Surgeon General, or more accurately, whatever some large medical corporation, insurance giant or drug company can convince lawmakers will prevent certain diseases, will be mandated.

      I can foresee rules forcing people to undergo colonoscopies, mammograms, CT Scans, chemotherapy and other invasive procedures or they will be fined, have their benefits taken away or threatened with imprisonment. Americans will lose their freedom of health care choices. We have already seen such things with certain vaccinations and other treatments mandated by the CDC. America’s used to have the freedom to choose how to cover the health of their families, even if it were wrong – freedom evens means the freedom to do stupid things, or what others see as stupid, because some of those called stupid in the past have also been proved right in the end.

      Our future could possibly include mandates to take certain medications, if you are diagnosed with a particular affliction. People will be forced to take statin drugs, blood thinners, antidepressants, just by being diagnosed with a set of symptoms – everyone may even be mandated to take certain drugs as a prophylactic for certain diseases they yet suffer (there has been talk of placing statins in the water supply by some bureaucrats to prevent heart disease) – medications and procedures that have not been proven to be effective, have horrible side-effects and in some cases, have questionable safety?

      I’m sure many will roll their eyes at such predictions, but who would have predicted house-to-house search and seizures without warrants in the U.S.(a direct violation of our forth amendment to the U.S. Constitution) prior to 9/11. We saw such things following the Boston Marathon bombings earlier this year.

      We used to be a free nation a hundred years ago, but that freedom has been slowly stripped away over the last century. Now, our liberties are being taken at an accelerated rate and our Bill Of Rights shredded before our very eyes. I am sure that the proposed future of our health care was well planned and funded by the likes of the large pharmaceutical companies, the insurance companies and other powerful players in the corporate medical world. The Canadian system will seem tame by comparison to what we may be facing here in the U.S..

      Thanks again for your comment and the best of wishes to you.

  8. Ellen
    July 11, 2013 | 2:32 pm

    My daughter had a bowel transplant (small and large) in 1996 when she was 4 in London, Ontario Canada. She will turn 21 in November. It has not been an easy road but with the help of our dedicated small town paediatrician she has survived two episodes of kidney failure and numerous hospitalization s over the years. She is a real fighter. She has extremely difficult venous access so dehydration is her worst enemy. Not many people here knew about bowel transplants but luckily my paediatrician did. Colleen has made so many friends over the years so we have spred the word here in Canada.

    • Wolverine
      July 31, 2013 | 1:24 am

      Thanks for your story, Ellen. 1996 was in the very early years of successful bowel transplants, so your daughter is a real trooper. Morality rates for small bowel transplants were extremely high back then, so I am really happy to hear that your daughter has been able to manage with it.

      Yes, dehydration does seem to be one of the highest risks with these transplants, especially in children. I met a young lady who had a multivisceral transplant (six organs) in 1998, when she was only 8 years old. She was 18 when I met her at Jackson Memorial Hospital and had returned there for a kidney transplant because her kidneys had failed from years of dehydration. She did finally get a kidney and is doing fine.

      Keep spreading the word there in Canada. There are still many doctors who still do not know about bowel transplants and as a result, many people are still suffering and dying on TPN. I hope that things continue to go well for you daughter.

  9. Diane
    August 13, 2013 | 8:58 pm

    My husbands grandmother just died last night. They did surgery and said too much of her bowels died. I wonder if they could have done something for her. My husband’s parents never mentioned any other options, they pretty much said if only a small amount of her bowels had died she would live, otherwise “it was not good.” Doesn’t sound like any other option was presented. I hope intestinal transplants become better known, like you guessed, I had never heard of the procedure.

    This is kind of off topic but the UPMC is amazing. My dad always went there for brain surgeries as did my sister. Too bad in Alabama things seem a bit behind. Maybe things would have went differently for his grandmother had they been more advanced.

    • Wolverine
      August 15, 2013 | 5:55 am

      Hi Diane, I am so sorry to hear about your father’s grandmother. It may have had something to do with her age. I had lost about as much intestines as a human has – there was only 10 inches of small intestine left. Then again, the doctors said that very few people survive losing as much intestines as I did, so I am more of an exception, not the rule.

      UPMC is an amazing hospital, but they have been sliding backwards a bit in the last couple of years. I am not sure I would want to get the transplant there at this point. The chief surgeon, Dr. Tzakis, who was also the head of the transplant program there, has left UPMC and is starting a new intestinal/multivisceral transplant program at the Cleveland Clinic in Weston Florida. It may be a few more years until CC is ready to perform intestinal transplants, so Dr. Tzakis is performing all the transplants at the Cleveland Clinic in Ohio in the meantime.

      There are so few hospitals that have a successful program for intestinal and multivisceral, which is most likely why so few doctors have even heard of them. You would think that gastroenterologists and other surgeons would be more inquisitive about advancements in their fields, especially advancements that could save lives, but many doctors seem to think there is nothing more for them to learn once they get their medical license – well except those things they are paid to learn from the drug manufacturers.

      Stay healthy and be well. Wolverine.

  10. Patricia
    September 11, 2013 | 4:11 pm

    Thank you Wolverine for the information I have pseudo obtrutive bowel disease. You have given me hope I have had multiple surgeries and at least I know there is a option out there now for people with my disease.

    • Wolverine
      September 17, 2013 | 3:07 am

      Thank you for writing, Patricia. I am so sorry to hear about you bowel disease. That is a really rare disease and I hope that there is something that can be done so that you wouldn’t need a transplant. But, you do have hope if it comes down to that. My transplant gave me back my life, otherwise I would have stayed restricted to TPN infusions around the clock.

      There were over 20 different doctors that told me there was no such thing as an intestinal transplant and that I would be hooked to an IV pole the rest of my life, but doctors do not always know what they’re talking about, so always continue to search for answers. I hope you do not need any more surgeries – I know how rough abdominal surgeries are.

  11. Stu Ward
    September 19, 2013 | 2:45 pm

    Thanks for this. I came here because of your post on meat digestion. My daughter has crones and has already lost her colon. The fact that this option is there should she ever need it is reassuring. Also you mention of the new liver protective type of TPN is also reassuring. When she was on TPN, we could see her blood sugar going up. She was almost diabetic by the time she came off of it. We had to bug the staff to turn up the fats and turn down the sugar.

    Keep writing.

    Stu

    • Wolverine
      September 20, 2013 | 12:40 pm

      Thanks for writing, Stu. I am sorry to hear about your daughter’s Crohn”s Disease. My wife and I met a young woman who received a multivisceral transplant as the result of Crohn’s Disease. She had suffered many years from the crippling damages of the disease, which was very sad, but it was amazing how the transplant gave her a much better quality of life than she had previously – so there is hope for your daughter if the disease should progress that far.

      The healthier lipids are named “Omegaven” and are still not available to all patients here in the U.S., although it is my understanding that it is becoming a bit easier to get and will hopefully soon be available to all TPN patients. I have no idea why the FDA seems to be dragging their ass approving it here, when it has been used in Europe for quite a while, but I’m sure it’s politically motivated and has more to do with patent holdings than product safety.

      I hope that better treatments for Crohn’s will be on the horizon, so your daughter is never in need of a transplant, but it is good to know that they are available and can give her a life back if the disease goes too far. Thanks again for your comment and my best wishes to your daughter.

  12. Ed
    November 10, 2013 | 11:58 pm

    i brought up the subject on Sally Brown, a private Facebook page for IBD sufferers. I had no idea that a transplant was possible. Someone corrected me.
    Good to know.

    Ed

  13. Kelly Conrad
    December 5, 2013 | 6:55 pm

    My husband has stage 4 carcinoid cancer of the small bowel (inoperable) with mets to liver. We spent his 51st birthday at MD Anderson Cancer Center today where we were told to look into small bowel transplant. This is the first we’ve ever heard of it. Our doctor mentioned Pittsburgh and Miami. We’re sitting in the airport waiting on our flight and found your story. Thank you for sharing.

    • Wolverine
      December 5, 2013 | 8:41 pm

      Thank you for writing and telling your story. I am glad that you were able to find my site and find out more about intestinal and multivisceral transplants. Both Pittsburg and Jackson memorial in Miami have very successful transplant programs.

      Many people, including doctors, have never heard of the success of these transplants. I am sorry to hear about your husband’s condition and hope he will find an answer, even if that requires a multivisceral transplant.

      I will be happy to answer any questions that you or your husband may have regarding these transplants and/or the recovery from them. If you need any help making contact with the doctors or staff at Jackson Memorial (where I had my transplant) I can help. Please feel free to contact write me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.).

  14. Judy Maggio
    December 6, 2013 | 10:54 pm

    THANK YOU SO MUCH. i REALLY NEEDED THE INFO YOU HAVE SO GENEROUSLY GIVEN. MY NAME IS JUDY MAGGIO AND I, TOO HAVE 3 FEET OF SMALL BOWEL REMAINING. I AM A 63 YEAR OLD WIDOW, AND DO NOT KNOW WHO TO TURN TO GET ASSISTANCE WITH THE COSTS, THAT MY INSURANCE WILL NOT COVER
    THANK GOD YOU HAVE YOUR WIFE TO BE IN YOUR CORNER. MY DOCTOR SAYS I AM AN EXCELLENT CANDIDATE FOR THE TRANSPLANT. IF YOU ARE AWARE OF ANY ORGANIZATION FOR ME TO CONTACT, PLEASE INFORM ME. MY DR. SAYS MY PROGNOSIS IS POOR WITHOUT THE TRANSPLANT. I HOPE YOU REHAIN WELL. THE ENCOURAGEMENT YOU HAVE GIVEN ME IS GREATLY APPRECIATED. JUDY

    • Wolverine
      December 7, 2013 | 3:15 am

      Thanks for writing Judy. I am sorry to hear of your health problems. I have a lot of contacts and information that I can provide to get you in contact with the transplant surgeons at The Cleveland clinic or Jackson Memorial Hospital, but getting financial assistance is a tough one.

      Unlike cancer, there are not any organizations or charities established for short bowel syndrome. That is a shame, because it is just as serious as cancer or any other disease and unlike many cancers, there is hope for those that suffer short bowel via organ transplants. I was lucky and the state of Florida qualified my case as “catastrophic” and “medically needy” and covered all of the cost not covered by insurance, which was most of it.

      I’m not sure where you live and if that state would get involved, but you would have to contact health and family services to see what is available to you. I know this can be difficult and you are right that I was lucky to have my wife, who has a natural skill at these things. She ultimately had to petition Senator Nelson, who sent a letter to the state capital on my behalf, because I had run out of hospital days and was expected to wait six months before more benefits would be restored – unfortunately, the doctors were saying I would not survive six months, so my wife was desperate to change the rules and managed to pull it off.

      If I were you, I would contact one of the hospitals that perform intestinal transplants (there are not many) and make contact with the surgeons and staff. They are usually very helpful at getting you in for the operation and can probably help steer you in the right direction on getting the financing.

      Short bowel syndrome is a very serious illness and the long term prognosis is not very good without a transplant. TPN can not be lived on indefinitely. Though it can keep you alive in the short term, it is also very destructive to the organs and arteries, so it. Is a short term answer at best. As you have probably already learned, TPN also promotes systemic infections, which can be deadly.

      Please feel free to email me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.). Ask me any questions that you have concerning the transplants and I will try my best to answer them. I wish there were organizations who solicit funds for short bowel syndrome, but because few people know of the disease, there is no money available for these patients. I hope to bring more awareness to this illness, because those who die often die unnecessarily premature, because an organ transplant can give them back their life.

  15. charles
    December 19, 2013 | 6:52 am

    My wife is being scheduled for a transplant in January. The lead Dr. left Pittsburg to join Clev. Clinic. Would you mind if i asked you some questions. Just reply back through my email address.

    • Wolverine
      December 20, 2013 | 12:11 am

      Thanks for writing Charles. I am saddened to hear about your wife’s condition, but happy to hear that she has been approved for the transplant. I will send you an email so we can discuss any question that you may have and that I would be happy to try to answer. Thanks, and tell your wife I wish her the best of luck and a quick recovery.

  16. James Morton
    February 13, 2014 | 10:59 pm

    I just wanted to say thank you for sharing your story. I am currently very close to getting on the list for my transplant at Duke. They have a great success rate and the team is headed by Dr. Sudan who came from Nebraska.

    I am 42 and in December I went in for LADD’s to correct a volvulus. It was only recently discovered and the fact I had lived 42 years with it was amazing by several doctor’s accounts. It explained alot of problems I had in my life with my intesting and I was eager to live a life without those problems. Unfortunatly the vein connected to the small intestine was the wrong one and the couldn’t graft quickly enough before the intestine died. Between 2 surgeries I was out for 2 days and the total surgery time was around 20 hours.

    I have been on full TPN for 2 months now and am eager about my surgery. Your absolutely right in how rare it is and how little anyone knows about the procedure. Thanks for shedding a bright light on this and thanks so much for sharing your story.

    • Wolverine
      February 14, 2014 | 3:17 pm

      Hi James, I am so happy to know that you found out about intestinal transplants. Living on full-time TPN is not really a reasonable option for those of us that have lost all or most of our intestines.

      You are probably on a 13 to 15 hour infusion of TPN, like I was prior to the transplant – then the remaining hours were infusions of Lactated Ringers for hydration. There was very little time that I could spend not hooked up to an IV bag. I was tethered to that pole 22 to 24 hours a day (unless I wore the backpack, which was very heavy with 2 liters of TPN and a pump in it). I would imagine that this is similar to your situation at this time.

      Yes, Duke University has a very reputable transplant program. I am also very familiar with the program in Nebraska – a very successful program. You will be in very good hands. Once you are listed, it usually doesn’t take long to get an organ, because the demand for intestines is very, very low (so few hospitals can do the surgery). I received an organ within 6 days of being listed.

      I hope that you will receive an organ soon after being listed. All of the doctors that attended to me after losing my intestines were not aware of the transplants, so I felt compelled to publish this website, so that anyone searching for “intestinal transplants” would hopefully find my story and see that the transplant is very survivable.

      After I was finally released from the hospital (I was in the hospital for six months following my transplant because of some serious complications, which are rare – you will recover much faster than that), I told my wife that I would be happy if I could help just one person with this effort, because no one had any information about intestinal transplants published at the time that we were searching. All of the doctors and surgeons working with me attempted to talk me out of having the transplant. They did not believe that they were successful, but my wife had discovered that there were a few hospitals who had very high mortality rates for intestinal and multi-visceral transplants.

      I was very satisfied when I was able to go back to those hospitals and show those doctors that I was alive and well and was able to get all of my nutrition by simply eating. There was one doctor in particular who continued to tell me I was not going to live very long and I might as well accept it. I am serious. This clown came into my room every morning and would say that he didn’t like giving people false hope and that my condition would lead to a premature death, because I was getting so many systemic infections.

      It was really fun to go back there a year later and find that guy. He was in the cafeteria of the hospital when I spotted him. I pulled up my shirt and showed him that I no longer needed an ostomy bag, nor a port – I was normal again and used the bathroom like very other human. He was shocked, to say the least. He told me he figured that I was dead already. He did learn a lesson about frightening patients because of his ignorance of medical progress.

      I hope that you can keep me informed of your progress. I wish you all the luck in the world and a quick recovery. Feel free to write me by using the contact page (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.). This is a very serious operation, but is very survivable as long as you adhere strictly to the rules. I had heard a lot of stories about men who had not survived the transplant, so I asked several nurses why the men had such a higher mortality rate? The answer was quite simple – because the men are more prone not to follow the protocol and do stupid things. One guy I was exchanging emails with had received an intestinal transplant at The Cleveland Clinic. In an email, he told me that he wanted to get a tattoo of intestines to commemorate the transplant — this is the asinine things that will get you killed.

      I told this guy that he will be on Prograf, which cripples part of the immune system. The chances of him getting a serious infection are far too high to risk it, but some men love to take risks or dares. Just don’t take any risks and wash your hands a much as possible (I carry hand sanitizer and clean my hands after touching anything in a store, especially door handles or anything that a lot of people touch).

      Thanks for writing and sharing your story. I am sorry for your situation and for the misery that I know you have gone through.

      • James Morton
        February 17, 2014 | 7:15 pm

        Thanks for the response its really nice to know that someone else has experienced what your going through. I am on 2300 cal 4500 ml 16 hour infusions with 1 l hydration every other day. I am 6′ 3″ and was 260 before my intestine was removed im now at 230.

        My doctor told me in Europe they encourage people to stay on the TPN cause the transplants are so risky (mine is an isolated transplant fyi). Duke had 5 adult patients last year with 100% success. How anyone could decide to stay on TPN, if they have 0 ability to eat or drink is beyond me.

        Questions

        How long were you on your feeding tube?

        ” Ileostomy?

        Do you have any side effects from the prograf?

        Whats it like when you catch a cold on the prograf, i,m susceptible in the winter(I all around am miserable in the cold but I usually try and get out and be active but it does mean a winter long sniffle), should I just stay inside?

        Oh by the way do you now much about advagraf (its the once a day version of prograf).

        Have you ever missed your dose or had your schedule get away from you and had the twice a day be a problem? If yes is it as bad as they make it out to be?

        Anyways thanks for your time I did the calculation with my doctor and we determined since the first intestinal transplants in the 90’s there have maybe been 350 adult small intestine transplants, its a pretty small club.

        I’ll keep you informed of my progress.

        • Wolverine
          February 18, 2014 | 6:15 pm

          Thanks for the reply, James. My TPN requirements were pretty similar, but for some reason I required a lot more hydration. The remaining 6 to 7 hours I was not infusing TPN, I needed Lactated Ringers infused or I dehydrated. Maybe it was my smaller size – I am the opposite of you – only 5’6″ and typically around 130 pounds. After losing my intestines, I averaged only around 105 pounds. My loss of weight was probably due to the back-to-back systemic infections that I suffered – often times running fevers in excess of 105 degrees F.

          In Europe, the patients do better on TPN, because they are allowed to use a lipid infusion called “Omegaven”, which is derived from fish oil and does not cause the liver damage that the “Intralipids”, which are the soy based lipids exclusively used in the U.S..

          I agree with you. I am so glad I was eligible for the transplant, because living on TPN was a horrible quality of life.

          You should be able to have the ileostomy reversed or taken down about a year after the transplant. I had my transplant in March of 2010 and the reversal was done in January of 2011. Then you will no longer have an ostomy to maintain (I’m sure you’re looking forward to that – I know I was so happy to get rid of that thing)

          There was a medication called Valcyte which we were also kept on for the first year (a prevention for the Cytomegalovirus – historically the biggest killer of early transplant recipients). You should be able to drop the Valcyte after the first year, about the time you have the “take down”. They will also have you taking steroids (I believe it was solu medrol) after the transplant operation, but they should begin to slowly decrease them over the first six or seven months until you are off of them. I believe they are just to speed up the healing from the surgery.

          You will probably get only 1 infusion of Campath, which is given at the time of the transplant surgery. Campath was the drug which made intestinal transplants possible. Prior to the use of Campath, very few recipients survived an intestinal transplant for more than a week or two. Extra Campath is only used if there are signs of rejection, though I am aware that some programs (such as the one at Pittsburgh) still give 3 mandatory infusions of Campath, some don’t, because it increases cancer risks later down the road.

          I haven’t suffered any bad side effects from the Prograf, though there are some rare cases of people being allergic to it, but those are extremely rare. Dry mouth is probably the only noticeable side effect, but it isn’t a real bad dry-mouth, it just makes somethings difficult to swallow (like bread, but since I don’t eat grains anyway, this is not a problem for me)

          Prograf dosage is always a juggling act, because the Prograf is very hard on kidneys, so it is best to stay on as low a dose as possible, but not to risk organ rejection. Your dose will be much higher following the transplant than it will be a couple of years later. I have been able to lower the dosage as time passes. I believe that I was on 16 mgs twice a day directly after the transplant and 8 mgs twice daily after a year. Presently, I only take 3 mg twice a day.

          I have only had one cold in the 4 years since my transplant and surprisingly, I got over it in the normal amount of time that I would have prior to the transplant and the symptoms were no worse than any other cold I have ever had.

          I doubt that you will get sick more often than before, it’s just that the risk of becoming something more serious is higher – especially developing into pnuemonia. Pneumonia is still the greatest threat to transplant patients, which is why Dr. Tzakis, the chief surgeon for my operation, believes in keeping the patient on Bactrim for life, many other programs stop the Bactrim after the first year.

          The Bactrim is typically taken three days per week (Monday, Wednesday and Friday) and is meant as a prophylactic for a particular fungi that used to be one of the biggest killer of transplant recipients. This fungus attacked the lungs, causing a deadly pnuemonia. According to the Infectious Disease doctor at Jackson Memorial, the fungi never seem to develop a resistance to the Bactrim, which is why it can remain effective for life.

          I have missed doses of Prograf in the past, but my doctors always told me just to pick it back up with the normal dose on the next scheduled time. The idea of Prograf is to maintain a certain level in the blood (which is why I still have to get monthly blood tests to check the level), so missing one dose is not going to result in the patient suffering organ rejection. I have not missed very often, I try to stay as strict as possible on the Prograf schedule. I am probably one of the few recipients that actually follow the doctor’s advice of fasting at least 30 minutes before and after taking the Prograf.

          There are some foods that can have a negative effect with Prograf – some in fact, may render it inert, so it is best to take it on an empty stomach, because Prograf is the most important drug you will take. The one food in particular that we were warned of was grapfruit (which is okay, because I hate grapefruit – even though I live in Florida). There is something in grapefruit which will cancel the effect of the Prograf.

          I have always set an alarm in my cell phone when the Prograf is due. I think that when a medication is as important to the patient as Prograf is to us, you will find a way to never forget to take it.

          You are not going to die because you are late taking it or miss a dose. If you are only an hour or two late in discovering that you missed it, I would take the dose, if you are more than 6 hours late, I would just skip until the next dose comes around or take a half dose. There was one time that I couldn’t remember if I had taken it or not. I called my coordinator and she said not to risk a double dose, but just take it at the next scheduled time. An overdose of Prograf can do a lot of damage to your other organs.

          In order to prevent that from happening again, I use one of those weekly pill boxes (like seniors lay out all their medications in). That way, I can lay out all of my Prograf for the week. Then, I can tell if I took my dose already, because that pills will be missing from it’s slot.

          Before the transplant, I thought I would be taking a fist-full of meds the rest of my life. I think it is pretty amazing that I only have to take one medication daily (The Bactrim is 3 days a week)

          The transplant has only caused me to make a few changes in my lifestyle. I have found over the years that there is more gear that I have to carry at all times than I was used to. I have learned to carry all the day’s doses of medication with me, even if my next dose of Prograf is many hours away and I don’t plan on being out that long, I still take it, because I would hate to get stuck out somewhere and not have it with me.

          I also always carry a bottle of hand sanitizer and sanitizing wipes to clean any surfaces I must touch. My wife found these really cool retractable cords that allow you to attach a small bottle of hand sanitizer to your belt or pants. Because of all the extra gear I have to carry now, I wear a very small backpack that slings over one shoulder. It looks like a back pack, but is easier to get on and off.

          You may find yourself a lot more aware of dirty surfaces or at least you should. I have become a bit of a gremaphobe, which is not a bad thing in our case. Whenever I touch things (door handle, merchandise, shopping cart), I think of my hands as contaminated and will not touch my face, mouth or eyes without first sanitizing or washing them. It’s become automatic, so I don’t have to think about it.

          I have only had one cold in the four years since my transplant, most likely because I clean the hell out of any surfaces I am going to touch and sanitize my hands after touching any surface, especially ones that many other people have touched. I clean tables and chairs at restaurants with the sanitizing wipes and even my seat at the movie theater. The one cold that I did catch was because the clerk at the DMV told me to look into the machine for the eye-test and I didn’t clean it with sanitizer first. Luckily it was just a cold virus and not hepatitis. That was in the first year after the transplant, I have not made that mistake again – I clean all surfaces!

          Yes, we are in a very rare group of people, medically speaking. Your assessment sounds about right for the adults. I know that they have performed more intestinal and multivisceral transplants on children. At the time of my transplant (2010), I was told that less than 3,000 had ever been attempted in history – given the fact that no one survived an intestinal transplant for the first 20 years that they were tried and that the mortality rate was still very high up until about 10 years ago, I figured that there are less than 1,200 survivors world-wide – maybe less. In a world of over seven billion people, that is a very small fraction.

          With that in mind, it is easy to see why so many people have not heard of them, including doctors. I am really glad that you were made aware of the success of this transplant, which will give you your life back. I look forward to hearing about your progress. Thanks for writing and I hope you will be able to keep me appraised.

          • Lorraine Thrush
            February 22, 2014 | 5:54 am

            I was so pleased to come across your site. I am from Australia and I have a 24 year old daughter who had intestinal failure. She was born with this condition and has suffered many episodes of chronic pseudo obstruction throughout her life. The last 4 years she had been virtually hospitalised and connected to TPN 24 hours per day. We were promised an intestinal transplant here in Melbourne, Australia. We actually moved 1000 miles from another State, as Melbourne is the only city in Australia where they can do this type of transplant…..or can they! They have only performed 1adult intestinal/ liver transplant in nearly 4 years. After waiting nearly 2 years here in Melbourne, we have now been told they are not going to do the transplant. The doctors have given us very contradictory reasons why they won’t do it, but we can’t make sense of it. It has devastated us….being given this hope and then have it taken away. They also took her small bowel out and said that was stage 1 of the transplant! I am not prepared to sit back and do nothing. The politics here in the hospitals in Australiabis so bad. We are looking to see if we can get to Pittsburg. My daughter is very, very weak and is nauseated all the time from the TPN and lipids. She has had a lot of life threatening line sepsis episodes, one of which she has just recovered from, after it landed her in ICU for 5 days and a breathing tube. I don’t know if you can help in any way, but it is good to have support from those that have been through it. I know my case is far more complicated as we are international, and to even get her there from Australia, will be a major task in itself, not to mention the huge financial cost. We are taking steps to see what we can do in this regard. We have had a lot of media coverage here in Australia. One of the TV stations are running a life’s story on Marianne. My guess is that if we do go to Pittsburg, they will want to continue to follow it. It will make an even better story perhaps!!!..depending on what happens. I don’t feel my daughter has a lot of time on her side. She is too weak to do much at all anymore. I would love to hear from you.

            Lorraine Thrush

          • Wolverine
            February 22, 2014 | 9:19 pm

            Hi Larraine, I am so sorry to hear about your daughter’s condition, I know from first hand experience just how difficult life can be for both the patient and the family members. I have always told my wife that she may have had the more difficult role, I’m not sure that I could have handled being the one watching her go through all of that and be powerless to help her or stop the pain.

            To my knowledge, there is only a handful of hospitals in the world that have successfully performed intestinal and multi-visceral transplants (where the patients have survived more than a year) and all of them are in the U.S.. There were patients that had traveled to Miami from all over the world to receive these difficult and rare transplants. Pittsburgh has on of the most successful programs in the world (They were the first hospital to successfully transplant intestines).

            I too suffered back-to-back systemic infections from the TPN ports. Both infections nearly killed me, sending me into septic shock (a very life-threatening condition). I also nearly lost fingers and toes to the pressors used to stabilize my blood pressure (they turned black and blue). My wife was able to get me moved up on the transplant list because the infections were threatening my life constantly, which would also move your daughter up the list (not everyone on TPN suffers these infections, but us that do have to get a transplant). I also had a sepsis that rendered me unable to breathe on my own and need to be intubated, then to complicate things more, they perforated my right lung intubating me and the lung collapsed (pneumothorax). I was not expected to survive that incident, but somehow did.

            I can’t imagine the politics that you’re facing, even being here in the U.S., it was difficult. My wife had to ultimately petition a U.S. Senator (Bill Nelson), who personally wrote a letter to the State Capital of Florida to get the transplant moved up 6 months (because of the infections, I would not have survived another 6 months).

            I hope that the media coverage has also helped you to raise money for the transplant. Her best hope is to get her here in the U.S. to one of the really good programs (Pittsburgh, Jackson Memorial Miami, the Cleveland Clinic and others). The risks would be much lower having the transplant at a hospital that has been successful for several years.

            Have you made contact with the surgeons in Pittsburgh? I do not know anyone there, but I can certainly help put you in touch with Dr. Tzakis (the surgeon who performed my transplant and is one of the most famous surgeons in the world), who now works out of the Cleveland Clinic (he was working out of Jackson Memorial Hospital in Miami, Florida when mine was done). Once my wife actually made personal contact with the surgeons, they were able to speed things up and move it along.

            After losing my intestines, my wife attempted to work with the doctors in the local hospital, where I was being treated for the infections. Those doctors would always talk a good ballgame and tell us that they were working on it, but nothing ever seemed to progress. Once we decided to make direct contact, I had my transplant within two months. We found out that the other doctors had not even made any contact and were shining us on (They didn’t want me to have the transplant, because they didn’t believe that they were survivable). If you have already made contact with Pittsburgh, then awesome – continue to move forward! If you have not made actual contact with the surgeons (not the people in the financial department, they will shine you on also – you must speak with the surgeons, because their only concern is for you daughter’s life – not politics or the money). I actually had an abscess at the time I was appraised, which would have made me ineligible for the transplant (or any surgery for that matter). When my wife asked the chief surgeon about it, he told us that he was not interested in the politics or rules, that he was on our side and was there to save my life and would simply remove the abscess during the transplant. When he said that, we were both relieved and knew we were in the right place.

            Please contact me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.). I can guarantee you that I can put you in direct contact with Dr. Tzakis (or at least his coordinator, Debbie, who is just as good as speaking to the doctor himself – as matter of fact, she is better, because she does all of his scheduling). From there you can at least move forward on that end.

            The most important thing right now is to get moving forward with the medical part. Please contact me and let me know what I can do? I can certainly give you the direct contact information. Again, I hate to hear about your situation, but your daughter still has plenty of hope if you start this process going forward and not be misdirected and stalled by the bean-counters or doctors there in Australia. Time is of the essence, the sooner you can move forward, the better.

            The doctors in the local hospital kept telling us that they would have me transferred to Jackson Memorial Hospital, but this went on for weeks and nothing seemed to happen. We finally got tired of it (actually scared, because I was failing fast and wouldn’t make it much longer), so as soon as they released me from the hospital, we drove straight to Miami and checked me into the ER at Jackson Memorial Hospital (it was a nurse in the local hospital that advised us to do that) and it worked! That was the first time that the transplant surgeons came in and met me and I was scheduled for the transplant a month later.

            We even had to take some risks. It was a 4 1/2 hour drive to the hospital in Miami and my wife was stopping to hang IV bags of antibiotics the entire trip, but we knew that once we got there, any hospital ER in the U.S. has to accept and treat you. I seriously doubt I would have ever gotten the transplant had we not done this, or at least not in time.

            Once we realized that this is how things must be done, my chances for survival increased several fold. Do not depend on anyone else to get this done for you. You have to take the bull by the horns and do whatever you have to and get it done. It is too easy for your daughter’s needs to slip the other doctor’s mind, but she is never far from your thoughts and don’t worry about being pushy – this is your daughter’s life we are talking about – being pushy is what you must do. This was the attitude my wife eventually took.

            I wish you the best of luck and look forward to hearing from you. Your daughter can survive this and get her life back. I had lost all but 10 inches of my small intestines. I now have no ostomy bag nor require any TPN or even supplements for that matter.

            I hope you the best and am willing to help in any way I can. Please write me.

          • Lorraine Thrush
            February 23, 2014 | 1:09 am

            Thank you so much for your prompt reply. I feel so blessed that I found you. No, we haven’t made contact with Pittsburg yet, so you have certainly got me rethinking that one as I had heard about Dr Tzakis, but I though he was still in Pittsburg. Is Cleveland set up as well as Pittsburg, as far as the hospital goes and what they offer pre and post transplant? I had also heard and read about the unit in Miami. I have a 17 years old son and he wants to go to Miami!!!! He will go where is best for his sister though. I am divorced, so I have to do this on my own. I must add though that I have support from very good friends and family. One close friend has been working tirelessly in relation to what has been going on here with doctors and politics. The doctors here told me not to go to Pittsburg, as they ran it like a business and would transplant anyone because they could make a lot of money! Of course, I have not been put off by that. Basically, the doctors here are leaving her to die. They have even accused her of infecting her own lines and causing the sepsis. When you were getting line sepsis, did you have more than 1 bug growing at one time? I would really appreciate so much if you could forward me the details of contact for Dr Tzakis or Debbie. Are they approachable people? I guess I have just seen a few too many arrogant doctors here in Australia. Thank you, thank you, thank you so much for replying and offering your help. All the best to you and your special wife. Lorraine Thrush

          • Wolverine
            February 23, 2014 | 5:35 pm

            Dr. Tzakis and Debbie are very approachable and will work with you to save your daughter. Dr. Tzakis works out of both the Cleveland Clinic in Weston, Florida and Ohio. The intestinal transplant program has not yet been fully set-up at Weston, so all of his transplants are being performed at the Clinic in Ohio (where they have been doing transplants for a long time). I am not at home at this time, but will have my wife get me all of the contact information for Tzakis and Debbie and email it to you by tomorrow.

            A different surgeon took over the program at Jackson Memorial in Miami. Some of the recipients that I know kept their care through Jackson and they claim that the new chief surgeon is very good and has improved the program (they claim that the recipients have been having faster recovery times from transplants). I still remain in contact with the coordinators at Jackson, so I can also provide you with contacts there also – both Jackson and Cleveland have great programs with very high survival rates.

            I have no direct experience with Pittsburgh and do not know any patients who had their transplants performed there, but I do know that they have a very high survival rate (the highest of all programs presently), so they are doing something right. Dr Tzakis was one of the original team of surgeons at Pittsburgh who first succeeded with intestinal transplants – he is one of the pioneers.

            We can get this done. My wife and I will help in any way possible to make sure that your daughter has the best opportunity to get this transplant.

            I had many line infections. The first was a bacterial infection, the second one was a fungal infection. The TPN is very high in sugar (and other nutrients) so it promotes infections. Bacteria and fungus can multiply rapidly in the lines because our bodies will not defend a plastic line and the TPN is such a high source of food for the pathogens. Once the line becomes infected, the pathogens are spread quickly throughout the body, because the catheter which delivers the TPN is implanted to within just inches from the heart. The pathogens are flushed directly into the heart, where they are spread to every part of the body. These infections are very serious and kill many TPN patients. This is one reason why living on TPN indefinitely is not a viable option.

            Those doctors are idiots for blaming your daughter for the infections. TPN line infections are very common and very hard to prevent, but I also encountered plenty of cynical doctors, so I do not have a hard time believing that they behaved this way. Most doctors have a considerable amount of arrogance, and Dr. Tzakis is no different, except he can at least has the track record to back up his arrogance (which is more than some doctors can back up their attitudes with). He is one of the best surgeons in the world and is capable of giving your daughter her life back.

            I will get you the information and phone number to put you in direct contact with Debbie.

          • Lorraine Thrush
            February 23, 2014 | 4:02 am

            My friend was wondering if he could use your story and send it along with other information we have gathered and send it to the health Minister here, in our endeavour to try and get funding for us to go to USA. Also he was wondering if you would feel free to send a photo or two? I understand if you don’t want to. My friend is putting everything together and it should be ready in a couple if days to present to some of our leaders in Australia, including the Prime Minister. Thank you again for helping. Lorraine Thrush

          • Wolverine
            February 23, 2014 | 5:58 pm

            I will provide you with whatever I can to help get your daughter a transplant. I will put together some pictures and email them to you. Anything else I can do, just let me know. I owe my life to people who helped to get me the transplant, the least I can do is to help any others in that condition to get a new chance at life.

          • Lorraine Thrush
            February 23, 2014 | 7:43 pm

            Thank you so much for your replies. My daughter and I feel you have given us renewed hope. It is horrific to go through 2 years of being told you will get this transplant and then to be told we are no longer going to do it….so make the most of your life you have left!!!! (They didn’t actually use those words, but that is how we felt). They did tell us she could lead a better life, and travel …..attached to machines 24 hours a day. They are in denial or want to sound that way!! My daughters name is Marianne and my name is Lorraine. Marianne suffers a lot of pain and the TPN and lipids have always made her very nauseated. Getting the funding is going to be a challenge I feel. If it wasn’t for that, I would start making plans for the trip over. She would have to have a nurse travel with her. There are a few people here helping us work on it, so I need to keep positive and I feel we can do it. Thank you once again for all your encouragement. I don’t think you probably realise just how much this has meant to us. Lorraine Thrush

          • Wolverine
            February 23, 2014 | 9:38 pm

            That’s why it is important to get the arrangements with the surgeons made. Nothing seemed to move forward for us until that happened. Once everyone sees that you have everything else prepared and all you need is the financing, they take the talk more seriously and you will find a way to get it funded.

            As you have found out, it is important for everyone to know that intestinal transplants are successful and that there are surgeons willing to perform it, then there should be a lot of avenues open up for you to get it paid for.

            The most difficult thing we faced was getting anyone to accept the fact that an intestinal transplant was a real option. You have that part taken care of – I am living proof that they are successful, plus you will soon be in discussion with the doctors who can perform the surgery.

            I understand where your daughter is at. I was there and it is unbelievable how quick the doctors were ready to give up and just let me die on TPN. The doctors were very open about telling me that I would not live more than two years on the volume of TPN that I required – that was if an infection didn’t take me first. Most of them didn’t want to hear anything about a transplant, because they thought it was just a fantasy, but we proved them wrong. They kept telling me and my wife to accept my fate and make the best of it. Good thing we didn’t do that, because that was four years ago, so I would already be gone. We are going to do all we can to get your daughter that transplant.

            Tell Marianne to hang in there. I know what a rotten life being on TPN is. I will have the information for you tommorrow. Once we can prove that all of this is a reality, you will be able to find the financial assistance you need. Stay positive that we are going to do this. Thanks.

          • Lorraine Thrush
            February 23, 2014 | 4:43 pm

            I am confused. Does Dr Tzakis come from Cleveland clinic in Florida or Cleveland, Ohio? I was trying to find information about him on Cleveland, Ohio website and couldn’t find anything so when I typed in his name it showed him as being in Florida . Could you please clarify this. Thank you once again. Lorraine Thrush

          • Wolverine
            February 23, 2014 | 5:45 pm

            He works out of both. The Cleveland Clinic in Weston Florida is a new hospital and does not have the ability to perform intestinal transplants at this time. Tzakis still uses that hospital to tend to his existing patients (like me). I typically meet with him and his staff every six months for clinic – we do that at Weston, Florida.

            He performs all of the transplants or other surgeries in Ohio. He will eventually begin to do transplants at the Clinic in Florida, but that will be some time in the future (I am not sure how long that will take to be set up).

  17. Lynn
    March 10, 2014 | 8:13 am

    Hi wolverine,
    My brother lives in WI where he just went through surgery six weeks ago to remove all but two feet of his small intestines and half of his large intestines.He is on TPN but the Dr who did his surgery has advised a transplant.My brother is originally from FLA where I live so it is good to know there is a hospital here in FLA that performs these transplants and with a high survival rate.I believe God sent you to me with this message and I thank you.Just wondering how you are doing after your transplant and the recovery time.Hope to hear from you soon.Take care and God bless.
    Sincerely.

    Lynn

    • Wolverine
      March 10, 2014 | 4:16 pm

      Hi lynn, I am so pleased you wrote – I just got a larger than normal amount of emails and comments to reply to because of a new post I published last night and I have been up over 24 hours and your’s seemed by-far the most urgent, so I am going to try my best to answer your questions and everyone else will have to wait until after I get some sleep. If I sound like a moron. it’s just because I’m sleepy, but we can get back in touch later to make sure I haven’t said anything incorrectly.

      Yes, Jackson Memorial Hospital on the University Of Miami Campus is one of the hospitals that has been doing successful intestinal and multi-visceral transplants for about 18 years and have one of the highest survival rates of any hospital (I believe only the University of Pittsburgh has a slightly better rate and they have been doing them the longest.

      The transplant surgeon who set up the transplant program at Jackson, Dr, Abdreas Tzakis, was one of the pioneers of the fist successful intestinal transplant on a human at Pittsburg at the time. He has since left Jackson and works out of the Cleveland Clinic in both Weston, Florida and Ohio, but unfortunately, at this time only the Clinic in Ohio is prepared to do intestinal transplants. The one in Weston will once he has fully set up the right protocols, which could be a few more years.

      But fear not, because Jackson Memorial replaced him with a very brilliant replacement who has actually improved survival rates since 4 years ago when I received mine there and he has performed more successful intestinal and mutivisceral transplants than anyone in the world in the last five years.

      My recovery time is sort of irrelevant, because each patient can vary greatly recovery time, my recovery time was about six weeks when the average intestinal transplant recovery time was about eight to ten weeks, some longer. We were told it was the fastest recovery in their history at the time and was also told I was the fastest out of SICU at five days. But we ave heard that the improvement that the new chief surgeon has put in place had sped up those recovery times, so I’m sure like all records, mine was broken years ago.

      The near deadly infection I got was after I had been released from the hospital on an out-patient procedure and I was rushed back to the ER where things continued to happen and the rest of the gory details are on this site, but I don’t recommend letting your brother read that and put undue stress on his decision, it was not part of the recovery and was caused by a freak medical accident. I just have bad luck and seem to be on the receiving end of those a lot more than other patients dp – I lost my bowels to a medical accident.

      Recovery can vary greatly because of different body chmistry for sure, but also depending on how they lost their bowels which can determine how beat down there immune system is. One person may have lost their bowels to cancer and have a immune system compromised by Chemothrapy and another may have lost their’s in an automobile or hunting accident and otherwise is healthy and strong – there are possibly thousand of ways an adult can lose their intestines from chronic diseases (like Crohn’s Disease or Ciliac’s Disease), or blood clots or trauma and all of that can effect the recovery time.

      Then there are preexisting chronic diseases, like diabetes or some treatable cancers, like leukemia which both slow healing and would extend recovery time. But he should not be worried about that right now, it will take however much time he needs to heal. We need to get him the transplant first. The difficult part, politically speaking, begins with getting a surgical team to look at his case, we gotcha covered there if you are in Florida, because I am well known and registered at both Jackson Memorial and the Cleveland Clinic and we already know that Florida is a state who does cover intestinal transplants through Medicaid, if he is not insured and can qualify.

      As far as the transplant survivability goes, they are very survivable and his best option for having any quality of life if he has less than four feet of small bowels. because that’s the least amount anyone can live on, any less and he needs full-time TPN for both nutrition and hydration, which doubles the risks by throwing possibility of dehydration into the mix, which can sneak up at any times. It did on me several times.

      With a transplant he will no longer need TPN, he will eat and drink and get nutrition and hydration the way nature intended, be no longer hooked to a IV pole for even a moment, much les for the entire day and no longer have the need for a ostomy and stoma and I was just happy to see that thing go away! Although the stoma is kept for a year following the transplant.

      A remarkable middle aged woman I met from the transplant had an intestinal transplant in 2008 and the last three or four years has competed in nation marathons and triathlons, so you can see the potential of getting back a full life he could never have n fill time TPN? He will ave the ability in a year or two, to do whatever did previously, unless that was cleaning toilets or any other biohazard – that’s out of the question on Prograf, the medication we must take to prevent organ rejection.

      Every transplant recipient (any organ, even a kidney or bone marrow) will be on on the medication prograf and for intestinal, it is for life. Porgraf lowers parts of the immune system ((T-cells) and does not take out the entire immune system as some people believe, that was because earlier drugs used in the early years of transplant experimentation did, but many advances have been made simply in the four years since I had my transplant, much less some out-dated information some hospital resident may tell him to try to scare him with, because thats what he learned 20 years ago when he went to Medical School. Some doctors forget research continues to go on after they graduate.

      I only say this because many resident doctors here in Orlando tried to scare me away from the idea of an intestinal transplant because they were still operating under a lot of out-dated information. Luckily, we had the internet which stays more current than many doctors do.

      I too am happy you found my site, which is why I publish this blog, so I can help any one else needing information on intestinal transplants, because there was not anything about them on the internet four years ago when I needed one and every doctor was telling me and my wife they were not survivable.

      That should be plenty of information to digest for now, no pun intended. Please feel free to write me as often as you feel with whatever questions that you or your brother may have or any concerns, or if you need my assistance in getting in contact with the surgeons at Jackson, or the coordinators (The coordinators are who you typically deal with, because they do everything for the surgeons, but the actual surgery. Please contact me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.

      My real name is David Smith and I live in the Orlando area – west of the city of Orlando and near a town named Clermont. I will also be happy to give you or your brother my phone number if he would rather ask questions personally. Just write and I’ll email you all my contact information you desire.

      I wish your brother the best and will do whatever I can to assist. I am presently assisting two other TPN patients presently get connected to surgeons – one contacted me from Australia where it is impossible yo get an intestinal transplant and I have put her in touch with my surgeon here for her daughter who lost all her bowels. I am more than happy to do it, because we got very little help from any other doctors or anyone and I was running out of time on TPN because I had already suffered 2 bad line infections that went systemic and sent me into shock.

      My best wishes to your brother and all i can do to help him get a much needed transplant. I am sorry to hear about his unfortunate loss of his organs – I one of the few people who knows what that is like.

  18. Lynn
    March 13, 2014 | 3:45 pm

    Hi wolverine just was wanting to ask for your help in contacting some surgeeons on trying to get my brother James a transplant ASAP.He has had a set back yesterday .He has infection and has a temp.The Dr has put him back in ICU and running more test on him.His body is putting out to much fluids into the bag and they dont understand why.Did you ever have this problem?They had to put two big bags of fluid in him quickly because of dehydration.It sounds like something you went through with the infections you had.I hope he can pull through this.I would appreciate any info you could give me thank you and god bless.

    Lynn

    • Wolverine
      March 14, 2014 | 4:42 am

      Lynn, I replied to this in emails to you. I will get the information for the Jackson coordinator from my wife tomorrow.

      Your brother sounds as if he is suffering a line infection, which are very common in TPN patients. The same high sugar and nutritional content that make TPN feed the patient also feed pathogens. It is so high in nutrients, that they can multiply at an accelerated rate.

      The biggest problem is that our immune system will not defend a plastic line, so once the line is colonized with pathogens, it has to be surgically removed and a new one installed. Otherwise, these pathogens in the line will be flushed through his heart, where they are quickly spread around the body. This is a systemic infection and is probably the cause of the dehydration.

      Dehydration is always a danger to short bowel patients, because he does not have enough intestines to absorb water from what he drinks and must receive all of the hydration by IV. Having an ostomy output higher than what you are taking in is also common. One piece of advice here is to avoid beverages with a lot of sugar and/or caffeine.

      Caffeine is a diuretic and will increase the amount of fluids he loses through his stomach. I found I had to avoid sugar in drinks. It was the compound pharmacist that finally explained to my wife and I that the stomach has to dilute the sugar to be processed and will take water from the blood (which is robbing it from the tissues) in order to dilute the sugar. Because he has no ileum to his small bowels (this is the section of small intestines that reabsorbs the lost fluids), he will lose the excess water through his stoma.

      I noticed that if a drank a cup full of sweetened beverage, I would output nearly two cups of fluid through the stoma. Where was the extra water coming from? It was robbing it from my tissues, causing dehydration. Some doctors will tell short bowel patients to drink Gatorade – THIS IS BAD ADVICE. Gatorade contains a lot of sugar by way of HFCS and will still cause him to lose more fluids.

      Even doctors can lose site of the fact that a short bowel patient cannot absorb fluids anyway, so drinking Gatorade does not help. I actually had to point this out to some doctors who told me to drink Gatorade – once I pointed it out and they thought about it, they realized they were wrong.

      The only way he can get hydration is to turn up the pump on his fluids. The more he drinks, the more he may dehydrate himself – this was very difficult for me to overcome! I was thirsty all the time and our instinct when thirsty is to drink. Is is so primitive that it is very hard to overcome. He should try to just drink water.

      Coffee or tea will always be problematic, so I avoided them after I learned the hard way. I had ust gotten out of the hospital and my mother invited my wife and I over for dinner. She offered me some of her home-made ice tea, which I really love, so I drank a couple glasses. My stoma would not stop outputting and my wife was racing to match the lost fluid with IV infusions. My total ostomy output was nearly two gallons that night! We thought I was going to end up back in the hospital that night and my wife barely got me covered.

      I am sure that the nurses and techs are monitoring his intake and output. My wife always insisted on keeping those records herself, but either way, someone has to measure everything he intakes (including what he drinks and what fluids are infused). Someone should be measuring his urine output and adding it to his ostomy output. At the end of the day, if there is a deficit in the amount going in compared to what’s coming out, the difference has to be made up for by infusing the same amount of fluid as is the deficit – no more or less! It is a constant balancing act, but can be life-threatening if there is too much or not enough fluids (nature is amazing that our body does this all day long without us having to think about it.).

      This is one of the many terrible things about life on TPN. You have to always measure all fluids going in and all coming out.

      Hopefully he does not have to live this way very long and can get a transplant. I was so glad when I no longer had to measure everything going in and out. I hope you will be able to help him make all the arrangements to get the transplant soon.

  19. John
    March 28, 2014 | 10:27 pm

    My grandmother live to be 100. What killed her is that her intestines started allowing bacteria to get into her blood stream. The doctors fought the bacteria with antibiotics. That of course made the survivors stronger. Eventually no drug would work on them and she died.

    Yes. It could be argued that she lived to be 100 and that’s good. But I’m selfish. If I was 100 and my intestines were leaking bacteria into my blood I’d want a transplant. I don’t care when I’m supposed to die. I like living very much. So that started me thinking about intestinal transplants. That was in 2000. I didn’t know whether or not intestinal transplants were even possible. I CAN tell you that I will want one when I’m 100 and in the same situation that my grandmother was in. If you aren’t tired of living then it ain’t your time to die. 🙂

    I thought you might like to see this. Apparently intestinal transplants ARE being done. It got to this link from the Doctor Oz show web page. http://www.sharecare.com/health/digestive-health/what-is-an-intestinal-transplant

    • Wolverine
      March 29, 2014 | 2:15 am

      Thank you John for your comment. Intestinal transplants are certainly being done, I am a living testiment to their success. I just celebrated my fourth anniversiry since my transplant last month. The problem is, a lot of doctors still don’t know about them and are allowing patients with short gut to live out a miserable life on TPN. I was told by every doctor in 3 different hospitals that intestinal transplants were not possible and that I would have to stay on TPN until it finally killed me (they were estimating 6 months to a year). It was my wife who found a hospital that had successfully perfomed them. I am just trying to let more people know about that option and it has helped a bit, because six different people have written to tell me they found out about intestinal transplants from my blog and were able to arrange to have one.

      I hope that one day this procedure will become safer and easier to where a person 100 years old could have an intestinal transplant, if needed. Unfortunately, I seriously doubt they would approve someone of that age, because they probably wouldn’t survive the surgery (it’s pretty taxing, even on younger people and still many young people die). I’m not sure what the cut-off age is, I guess it depends on the person’s overall health and whether the surgeons believe they have a good chance of recovering. On my second bowel resection, I was in such bad shape, that when the surgeons opened me and saw what they were dealing with, they said that they would have just sewed me back up and made me as comforatable as possible until I died, if I had been over 60 years old. That’s kind of scary to hear, but both surgeons told us that.

      Thanks for the link. I hope that there will be more publicity for these transplants, so every person suffering from short bowel at least knows of the option.

  20. BEV Collins
    April 6, 2014 | 10:01 pm

    Thank you so much for all your information I have a friend who is on ton and hydration she does not have large intestine and only about 12 in of small intestine I have told her of your site and I believe she will be contacting you we also live in Florida she knows about JACKSON memorial but her insurance rejected the transplant they say their are other. Options undeliverable she is appealing that decision thank you for sharing and helping people you are a true angel. God bless you.

    • Wolverine
      April 7, 2014 | 2:20 pm

      BEV, thanks for writing and I am so sorry to hear about your friend. With only 12 inches of small bowels she would certainly be a perfect candidate for a transplant and probably won’t live many years without one. You have come to the right place and I have two important pieces of advice that can help save her life.

      The first is: check her into the ER at Jackson with dehydration (They have to take her in, it is law), this is what we did and the only way I got to finally meet the surgeons. Be sure she acts sick and in enough pain to be admitted, where she will be placed on the 15th floor. That shouldn’t be hard to do with such a short bowel. She will be taken seriously. Once on the 15th floor, she will get to meet the surgeons who perform intestinal transplants. With only 12 inches (I had 10 inches) they will be very interested in her case and want to evaluate her candidacy for transplant (because that’s what they do)

      My second piece of advice: If her insurance refuses to pay, drop the insurance, quit her job and go on Medicaid. Florida Medicaid will pay for intestinal transplants, which is more than many insurance company will do as long as they can get away with keeping her on TPN, not matter how many life-threatening line infections she may suffer. At least the state of Florida recognizes that an intestinal transplant is the only cure and sustainable option for short bowel syndrome.

      TPN is a temporary solution at best and will actually cost the state more money in the long run with multiple hospital stays from line infections, possible renal failure and/or dialysis from inevitable dehydration, cirrhosis of the liver from the infusion of Intralipids and the ultimate destruction of the six access arteries for TPN. Other risk factors included pulmonary edemas, edemas of all kinds and blood clots which will cost more financially and through pain and suffering is a far greater waste of resources than attempting to sustain a life on TPN.

      Everyone we met at Jackson, who had private insurance, ended up with tens of thousands in co-pays (more than they could every pay in their lifetime), If the surgeons evaluated her to be in need of a transplant (and they will with only 12 inches of small intestine – anything less than four feet of small bowel is not enough to sustain proper nutrition or hydration), then Florida Medicaid will take over full payment for the transplant and full recovery under the classification of catastrophic (which she is at this point).

      A transplant will give her back her life. No more TPN, no more stoma, no more ostomy, she will live as normal as ever before, except for a few pills to take (anti-rejection, which will make her at higher risk for infections, so she will have to be more careful around sick people. I am four years out and have only had one cold, so it isn’t as bad as some think it is.

      Please keep me appraised, I have many connections at Jackson and can help. Feel free to contacting me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.).

      I look forward to hearing from you and wish you and your friend all the best. If you or she would rather speak via phone, Skype or Facetime, just email me and I will provide you with the contact information. Is she hospitalized at this time?

  21. Dennis Bowley
    April 29, 2014 | 10:01 pm

    My wife Ann underwent a multivisceral transplant in Feb. 2008. She has done well until the past 9 months where she has been hospitalized with CDiff, dehydration, vomiting, diarhea, low grade fevers etc. We are from Orlando but the hospitals there couldn’t treat her properly. We are now in Pittsburgh where she had her first transplant. Her prognosis is either live out her days on TPN or consider a second transplant which would involve 6 organs rather than the 4 that were transplanted 6 years ago.

    • Wolverine
      April 30, 2014 | 2:31 am

      Hi Dennis, I am so sorry to hear about what happened to Ann, especially in light of the fact that she was doing so well for six years and also because I am a fellow transplant recipient, so I understand the hell she had already been through before this happened. Any idea how she got the c.diff? Did she have a colonoscopy or other endoscopic procedure at some point prior to the infection?

      Sorry to pry, I only ask because it would piss me off extremely to find out she got the c.diff from a colonoscopy (or other endoscopic procedure), but not surprise me. It is not possible to sterilze an endoscope, so I am always curious who else may have been infected by one. I was once infected by a ileoscope after my transplant with a gram negative bacteria called pseudomonas and it went systemic and nearly killed me (put me in a coma for 2 weeks and on a respirator, which they feared I may never come off of).

      I originally lost my intestines to a botched colonoscopy (perforation) and know of another transplant recipient who lost her transplanted bowels to a perforation from a colonoscopy last year and now she is also awaiting a second transplant. So many of the transplant patients I made friends with have been injured by those endoscopes (including myself, twice!), which is why I began publishing this site.

      I have been following the stories about this new resistant strain of c.diff, which has become deadly in many seniors. This strain of c.diff has been kept fairly quiet in the main stream media, but it has been spreading at an alarming rate.

      I understand that being immunosuppressed puts us at greater risk for many things, but it still makes it tough to hear news like this. One of the other woman I made friends with had a 6 organ multivisceral transplant, did very well for the first 3 years, but went into organ rejection last year. She ended up with a systemic infection which took her life in October, which devastated me.

      I was diagnosed with Multiple Myeloma (a rare and incurable bone cancer) last year and had to undergo treatments. Cancer is just one of the other risks, besides infections, that we face being immunosuppressed.

      I know what you mean about the hospitals in Orlando. Whenever I have ended up at one of those hospitals, they ship me off to Miami as quick as they can. They are scared to death of anything involving transplants which include intestine. After losing my intestines, it was doctors in the Orlando hospitals that told me intestinal transplants were impossible, thankfully, my wife and I didn’t believe them and continued to research.

      I didn’t know that there was another intestinal transplant recipient in the Orlando area, other than myself and another woman, Michelle, I know who lives in Kissimmee. I guess it’s because Ann had her transplant at Pittsburgh and not Jackson Memorial that I didn’t know of her.

      I hope the best for Ann. I am glad you wrote me, even though her condition breaks my heart – it further reminds me of how vulnerable we transplant recipients are. Unfortunately, I know a couple of intestinal transplant recipients who are facing the option of a second transplant right now. If Ann decides to have a second transplant, I hope all goes smoothly and she has a very quick recovery.

      As a little encouragement; I met a guy when I was at Jackson who was from Iran and was 9 years out when his organs rejected and he lost them. He had a second transplant and almost immediately rejected the new organs and lost them. He underwent a third transplant over two years ago and recovered fine and is still doing well. He actually recovered faster from the third transplant than he did from the two privious ones. It’s amazing the resiliency of the human body.

      Tell Ann that my heart is with her and I hope she will be back home very soon. I also hope my wife and I get to meet her one day. Only someone who has been through something like that can really understand what we are talking about. My wife went through her own unique brand of hell as I’m sure you have.

      Take care and thanks for writing.

      • Dennis Bowley
        April 30, 2014 | 7:49 am

        I really don’t know how the cdiff was contracted. We were discharged from the hospital (in Pittsburgh) and made airline reservations to head back to Orlando.The next morning I had to take her back to the ER. It was at that time that she first tested positive for cdiff. Needless to say we had to eat our airline tickets. This was in July of 2013. Since then she has tested positive four more times. The last two times she was treated with Vanco and Dificid. I was told by a doctor in Orlando that she will never be rid of it. After that I had her transferred To Florida Hospital where they did further treatment in order to get her strong enough to make the trip to Pittsburgh. I kept pushing for her to be transferred to Jackson Memorial as I didn’t think she was strong enough to make a six hour trip to Pitt. That idea kept getting nixed by her transplant team in Pittsburgh. When we finally arrived Ann could not walk or stand on her own. She was totally dehydrated and her potassium level had dropped below 1. Needless to say she had to spend a few days in ICU before she could get transferred to the floor. She is receiving all kinds of antibiotics and has not tested positive for cdiff since our arrival on March 26th of this year. Ann is not a very patient person, so I pray that she can find the strength to endure that long road that lies ahead.

        • Wolverine
          April 30, 2014 | 10:02 pm

          I am so sorry to hear about Ann’s condition and hope that things can change for the better real soon for her. Dehydration is always one of the worst parts about having short Bowel and being intestinal transplant. Like organ rejection and pneumonia, it is one of those constant threats we are faced with.

          I always get a lot of stares from other doctors and transplant patients when they learn I am on Bactrim for life, whereas most transplant recipients are only on it for the first year, then removed. Dr. Tzakis is one of the few transplant doctors that does this, because he swears that he has had recipients many years out still contract the pneumonia which Bactrim prevents. It may help with other such infections.

          Sounds like that trip really took a toll on her. I know how serious dehydration can be (I was just hospitalized 2 months ago with severe dehydration). I’m not surprised the doctors insisted on you making that trip, the transplant surgeons become very possessive of their patients. When there was a chance that I might relocate to south Cal., I asked he surgeon if I was there and something went wrong, would I go UCLA (who have a great intestinal transplant program) or come back to Miami — He said that they would insist that I be flown 3,000 miles across continent to Miami. I doubt I would have done that. It’s difficult for them to always place the patient ahead of their ego.

          When an immunosuppressed patient is crashing, every minute can mean life or death. The last sepsis I had, I would have never made it had I been rush to Ohio or Pittsburh. I was 2 blocks from Jackson at the time and still nearly didn’t make it in time.

          We were just talking to my coordinator Debbie today and she was complaining about how difficult they have made transferring the patient’s records from one hospital to another – that probably has something to do with why they wanted her in Pitt, but even that is more political, than medical, according to Debbie. Which really sucks, because the patient pays the price for this nonsense. It would have been easier for Ann if they could have transfered her records to Jackson, because she would have gotten care much faster. I hope her kidneys didn’t take a bad hit from the dehydration.

          It always seems like the more stubborn and difficult patients do the best and seem indestructable. This is something that my father used to refer to as being “Too ornery to die”, which my wife claims is the reason I am alive. Every time she says I am a pain in the ass, she now follows it up with, “if you weren’t that way, you probably wouldn’t be alive”. I don’t know Ann, but I wouldn’t doubt that she also has some sort of a real fighting spirit.

          Please keep me appraised of her condition if you can. You can email me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.). if you wish to keep these things more private (I never share emails with the general reading audience without first getting permission from the writer) – any comments written here are publish to all the readers automatically.

          I hope Ann returns home to Orlando soon, I look forward to meeting her.

  22. Swapna
    May 1, 2014 | 12:22 pm

    Hello Wolverine,

    My name is Swapna and I am 24 years old. I was born with Short Bowel Syndrome (i wasn’t born with my ileum, the most bowel i have had is 100 cm of small intestine and all of colon) and I have been on TPN my entire life except for 3 years between the ages of 6 and 9. I have had 51 surgeries, 27 of those were new IV lines. Despite being on TPN for so long my liver is still doing pretty good. As an SBS patient you fight your entire life to defy the odds and to get off of TPN. In 2010 on the middle of college I had surgery to taper my duodenum to hopefully improve my chances to get off of TPN and sustain with an oral diet and enteral feeds. Unfortunately it resulted in complications, more surgery, and more complications. I finally was exhausted and we went to Dr. Tzakis in Miami and in 2012 he did a complete enterectomy taking out my small bowel and large bowel in preparation of transplant. I can’t eat any solid food, I am on TPN every night, and iv fluids 24/7. My gastronomy drains 24/7. Since my enterectomy I graduate from college and was the commencement speaker. I am about to move to Cleveland Clinic to have an intestinal transplant, but honestly I am a little scared. Dr. Kareem from Pittsburgh and Dr. Tzakis are both at Cleveland Clinic. I am currently an obesity and malnutriton advocate for kids. to eat healthy. I am working on sharing my story and being a motivational speaker. Please check out some of my speeches on YouTube and send me an e-mail.

    I can relate to many of your posts and I am so happy to see you are a fighter and appropriately have been called the wolverine. I completely agree there is an urgent need for intestinal transplant awareness.

    • Wolverine
      May 1, 2014 | 3:05 pm

      Hi Swapna, I am sorry to hear about all that you have went through. I can certainly relate to having the SBS, but can’t imagine having it from birth. I was 48 years old when I lost all of my bowels. While at Jackson, I did see a lot of children from the Pedi ward who were born without intestines and were there to get transplants. There were even infants there who were scheduled to have multivisceral transplants.

      I had met one young lady, who is now an adult, that was born with short bowel syndrome. She lived on TPN until she was 8, but it had eventually damage her liver. At the age of 8 she had a 6 organ multiviceral transplant, which included a new liver. When I met her she was 18, so she had been over 10 years out from the transplant and was graduating high school (pretty remarkable for someone who was born without intestines).

      I can certainly understand your fears, a transplant of that magnitude is always a frightening proposition and it is a long hard recovery, but well worth it. There were only two times I remember being scared – When they called to tell me they had an organ for me, and then as they were prepping me for surgery on the OR table. Except for those two times, I stayed pretty excited about the whole thing, because my life on TPN had been such a nightmare.

      While on TPN, I had suffered back to back systemic infections, both placed me in septic shock and nearly killed me. I was far more afraid of what my chances of surviving another sepsis would be and knew that a transplant was the only way to get rid of the ports which kept getting infected. I could never get out of the hospital for more than a day or two before I would be back in for another infection, so I pretty much spent the entire 6 months between losing my intestines and getting the transplant in hospitals.

      You are in some of the best hands you could be in, with Dr. Tzakis and Dr. Kareem. Dr. Tzakis had probably done more bowel transplants than anyone alive and has been doing them successfully for nearly 20 years. If you mention David Smith from Jackson to him, he will remember me. At the last clinic, I was surprised he remembered me, but he claims I took 10 years off of his life and was the worst case he ever saw (he was referring to a sepsis I had about 6 weeks after the transplant. He says I shouldn’t have survived it and that was how I became known as Wolverine)

      I really appreciate your willingness to help educate others on short bowel, transplants and nutrition. I can’t wait to check out your speeches. I thank you for writing to tell your story. I hope that together, we can make more people aware of this life-saving option and bring more attention to short bowel syndrome.

      As frightening as a transplant is, I can guarantee that you will never regret the decision to do it. I never will regret, because prior to the transplant, I had to be tethered to the IV pole 24 hours a day and had one infection after the next. Even though the transplant is a long surgery (mine was 12 hours), it will seem like you blinked. I will never forget lying on my back, staring at the surgical light and wishing they would soon knock me out because I was cold and scared and wanted to stop all the negative thoughts racing through my head. It seem like it took forever before they knock me out. I closed my eyes looking at the surgical lights and opened them up and the lights were suddenly fluorescent type, because I was in the ICU. 12 hours went by in a literal blink.

      I hope you will keep me appraised of your situation. You can always email me by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you, or if you ever want to speak, I will send you my cell number if you email me. I keep in touch with over 12 different transplant patients that I met during the seven months I spent at Jackson (and others I met via the internet)

      You are so right about how nice it is to speak with someone who has been through something like this and can relate. I always enjoy the conversations I have with the other patients that I know. It is impossible for anyone else to understand what we went through and how it effected us. I was visiting one of my transplant friends at her birthday party a few weeks ago and we were talking about some weird hallucinations we had while being kept in a coma by propofol, but the really freaky part was we had both had almost identical hallucination. How many other people can talk about things like that? Thanks again for writing.

  23. Harold
    May 24, 2014 | 11:29 pm

    Hey wolverine, nice to find your story.
    I had a small bowel and liver transplant at UPMC in March of 1992. Dr Tzakis was on the team of drs that worked on me. Shortly after he went to Florida. A Great man with a lot of skill and bed side manners. I continued my care and follow ups in Pittsburgh. The dr there that continued and perfected the program was dr Kareem Abu-Elmagd. He has since transferred to Cleveland Clinic in Ohio to further the small bowel program there. I followed him cause he knows me inside and out.
    In 1993 I tried to get news media attention on this subject and no one was interested in it, I was so frustrated. I just decided to live my life to the fullest. Now I am reading up on the latest info on who’s been done and when. I think there is only one still alive that’s older than me (transplant date) and the last I heard she was doing good. She was a pediatric case in the 90’s.
    Now a days with the internet and social media maybe the word can get out quicker since the media celebs and politician could care less. I still am amazed at the dr I run into who don’t know about the success or play it down cause they can’t perform that type of transplant. Sometimes I think we should get an honorary Dr degree from our experience and knowledge of this type of transplant. Lol
    Thanks for sharing your experience.

    • Wolverine
      May 26, 2014 | 1:11 pm

      Hey Harold, it is awesome to hear from someone so far out from their transplant. 1992, wow, that’s when the procedure was still very, very risky (experimental actually) — I’m not sure, but I don’t believe they were using Campath at that time. I know that before Campath was introduced, the patient had to undergo a bone marrow transplant from the donor first or something like that.

      Dr. Tzakis had told me of patients who were more than 20 years out, but it is great to finally meet one of them. It is impossible to get the media to give any attention to short bowel syndrome, much less this insanely rare procedure that can give life where once only a slow death by TPN was possible. I guess like any thing else, it won’t get any attention until a celebrity or one of their children end up needing an intestinal transplant, then the media will be all over it like they discovered it.

      The only thing about the lack of information that bothered me was the fact that none of the doctors here in Orlando believed that they had been perfected yet (and here you are over 20 years out). They were constantly trying to tell my wife and I to give up hope on a transplant and get used to the idea of being on indefinite TPN. The problem was, I had 3 back to back line infections that went systemic inside 6 months, so without a transplant, there was no way I was going to continue to survive going in and out of septic shock.

      I am so happy that you contacted me. The longest living Multivisceral transplant recipient I’ve known so far has been about 9 years out, but I knew that there were still some survivors who were much further than that. UPMC was probably the only hospital that was doing successful intestinal transplants in the early 90s. Dr. Tzakis is also back at the Cleveland Clinic – has been for about 2 years. He is helping them set up a transplant program at the Cleveland Clinic in Weston Florida, but until they are set up there, he is still doing all surgeries in Ohio.

      We should get some honorary degree or something, because people like you and I have educated more people, including doctors on the advances in organ transplants. The local hospitals here in Orlando have invited me to speak a few times in an attempt to educate the doctors and hospitalist of the success of the bowel transplant – nothing better to prove the success than a survivor standing there in front of them. I believe that it is impossible to survive something like that and not come out of it with a vast amount of knowledge also. I have been able to answer many questions that have shocked most doctors.

      People like you and me have a much greater motivation to learn all about digestion, infection and other sciences that our life depends on. Thanks again for commenting and I hope that you continue to live life to the fullest. I always believed that it was possible to live out a normal lifespan after an intestinal transplant, which was my hope. Unfortunately my road has been made a bit harder since I was diagnosed with Multiple Myeloma last year. I caught it in a very early stage and with fast treatment we have it in remission, but it is incurable and will probably return some day – being immunosuppressed doesn’t help with that.

      Out of the seven other patients who received intestinal and multivisceral transplants at Jackson Memorial in 2010, only me and one other woman have survived to date. One of the other young women passed away last october, she was three years out at the time. Your comment couldn’t have come at a better time. My wife will be thrilled to read it. She has always been hopeful that I could live a long time like the people like you and others that we have heard about.

  24. KLudwig
    June 17, 2014 | 12:54 am

    Wolverine,

    I am baffled it took me this long to come across your website as I have suffered with a digestive motility disorder for about 15 months now and have continually researched different stories and hospitals to figure out treatment options. After becoming ill in March 2013 with a viral infection, my digestive tract basically shut down. I went to several local hospitals after getting down to an unhealthy 100 lbs and was severely malnourished until I finally was referred through a friend to Cleveland Clinic in Ohio where I was diagnosed with Slow Transit Constipation. In December 2013, I underwent a total abdominal colectomy to remove my large intestine. However, after the major surgery, my symptoms of intestinal obstructions have continued. I am currently seeing colorectal surgeon Dr. Tracy Hull and GI motility specialist Samita Garg at Cleveland Clinic in Ohio. If you read my story on my “Go Fund Me” website that I have attached to this comment, you will see that I too have tried to reach out to the popular national TV shows with no response yet either although I feel this information about intestinal transplants and digestive diseases is extremely important. I guess it literally takes someone going through the medical issues to really try to get the word out. I am awaiting further diagnosis and treatment post a SmartPill exam from my physicians, but since I am receiving care at Cleveland Clinic in Ohio already, I would really appreciate Debbie and Dr. Tzakis’s contact information as I feel it will be beneficial for treatment options in the near future. I too worry about the physicians putting me on TPN which as we both know is not sustainable for the rest of my life. And since I am only 23, I plan on living a long life. I agree that the risks of the transplant outweigh a life of never being able to ingest anything orally and have to be hooked up to IV nutrition daily. I appreciate your timely response and any contact information you can give me. Thanks.

    KLudwig

    • Wolverine
      June 17, 2014 | 2:41 pm

      Thank you for sharing your story — I am so sorry to hear about your condition. It seems that the media is not interested in any illness or disease unless a celebrity becomes afflicted with it, then it finally gets some recognition. It was that way with AIDs. No one had ever heard about HIV until stars, like Rock Hudson and Freddy Mercury, died from it, then it suddenly became front page news and everyone demmanded a cure.

      So far, no celebrity or one of their family members has been stricken with short bowel syndrome, a life threatening condition that many people suffer. I was surprised at the amount of children on the pediatric floor waiting for intestinal and multivisceral transplants. The children outnumbered the adults 10 to 1, so this is becoming a major issue. I believe that Dr. Kareem Abu-Elmagd is the chief surgeon for liver and intestinal transplants at the Cleveland Clinic (Dr. Tzakis is not doing transplants at this time, just teaching).

      Dr Abu-Elmagd is THE pioneer of the intestinal transplant. He and Dr. Tzakis together first perfected the intestinal transplant procedure while at the University of Pittsburgh, I believe it was in the late 80s or early 90s. In other words, you couldn’t be in a better place right now for getting an intestinal transplant, if you end up needing one.

      Yes, you can live a long time with an intestinal transplant, as long as you are very carefull. There is another intestinal transplant recipient who has commented on this very post (Harlod Bright) who had his transplant in 1992 (liver and intestines) and is still doing very well. This is really amazing, because the intestinal tranplsnt has much improved since the 90s — not many people survived them back then. The survival rates are much better now, but still carries a lot of risks.

      I am happy to provide you with any information or answer any questions that you may have. Contact me contacting me for any questions you may have or information that I may be able to provide by using the contact page. (I made the stupid mistake of having my email address posted here. Had to remove it, because every robot spider zeroed in on it and I was flooded with tons of spam advertising. This is why I must use the contact page, which encrypts my email address. I apologize for the inconvenience and wished to save those, who I know are ill and awaiting transplants, the extra steps, but I cannot better answer your questions when I accidentally trash your email because it ends up buried in hundreds of advertisements for penis enlargement tablets and offerings on how I can get a Harvard degree online in 60 days. Again, I apologize, but will have to ask you to take the extra steps to use the contact page. Thank you.). I have been blessed to have more than a half dozen people who have contacted me in the last 3 months concerning loved ones who are suffering short bowel syndrome. I have been instrumental in helping most of them make contact with transplant surgeons to arrange for trasnplants. This was why I published this website — to help people. It’s been kind of therapeutic for me, because it gives some meaning to why I suffered all of the things that I have — and more importantly, why I survived, when so many of the other people that I befriended there did not. This always weighs heavily on me. Thanks again for sharing your story.

  25. Tracy
    July 21, 2014 | 3:35 pm

    Thank you for sharing your story! I hope that many people can find the help like you did.
    I didn’t read all the comments but I just wanted to add that Indiana University Health in Indianapolis is also a successful intestinal transplant program. You can see our data on www/srtr.transplant.hrsa.gov.
    I am a dietitian that has been working with that program for 8 1/2 years. The surgeons at IU Health have performed over 190 transplants (including both pediatrics and adults).
    www.iuhealth.org

    Tracy

    • Wolverine
      July 22, 2014 | 8:08 pm

      Thanks Tracy for providing the information. Any information on hospitals that offer intestinal transplants is welcome. I actually get a good amount of traffic from people looking to find hospitals that offer this procedure. I have already had 7 people contact me in the last 2 months, who I have been able to help get in contact with transplant surgeons.

  26. Kelton Dupre
    August 6, 2014 | 6:31 am

    Sorry to let you know that Moreen has passed away. She did live a long time after her transplant but i dont know if you were aware that she had more than the small bowel transplant I believe she ended up having a kidney one as well a while after her small bowel. My wife had an isolated small bowel transplant im June 2010.

    • Wolverine
      August 6, 2014 | 5:53 pm

      Kelton, I am so sorry to hear about Moreen. This has got to be the hardest result of what I do. Three of the other transplant patients I became close to have passed away, the last one passed away in October and she was the mother of three young children. Several others who have written me have lost their loved ones before they could even get the transplant.

      It is not unusually for intestinal and multivisceral recipients to ultimately need kidneys, because dehydration and the Prograf take its toll on the renal system. I was just in the hospital this weekend for dehydration and knew my life again hung in the balance after they had infused more than 4,000 ml of fluids and I was still unable to urinate.

      Moreen was certainly a fighter and I will grieve for her family and friends. These transplants are not without risks, but I admire anyone who was willing to take that risk rather than surrender to the slow, debilitating death on TPN. I could not imagine spending the remainder of my life tethered to an IV pole (of course back to back infections also helped make the decision).

      I will never forget lying on the OR table waiting for them to knock me out for the 12 hour surgery and all I could think about was that this may have been the last time I saw my wife and family. I never regretted the decision, because if it had been my time, the last memory they would have of me was going out fighting, and that is how I will remember Moreen — a fighter! My condolences to you.

      2010 was when I had my transplant — March 23, 2010. I am a bit confused — is your wife Moreen? or is Moreen a friend of you wife? Please forgive me, I am working with 13 different people undergoing or about to undergo transplants and could not find any earlier post from your address to refresh my memory. Did you post under a different email address?

  27. George
    August 20, 2014 | 3:23 pm

    I had ulcerative colitis for the last 10 years but recently I became very ill and my colon became very inflamed and blocked so I had to have surgery to remove my entire colon (due to neglecting my health, stopped taking medications and was going through a lot of stress). I now have an ileostomy. I’m only 31 years old. I am very interested in a colon transplant. I understand the risks but I am fairly healthy now and really want to pursue a transplant. Do you think I can be a candidate? I realize I’m not in a critical health state but I really do want to get back to as normal a life as possible. I am not interested in jpouch or illeorectal anastomoses because those also have risks and results are not the same as if you have a colon. Any comments/information is appreciated! Thank you!

    • Wolverine
      August 20, 2014 | 7:04 pm

      Hi George and thinks for writing. I am sorry to hear about your difficulties, Ulcerative Colitis is a crippling disease and the loss of a colon can be devastating, especially in a person so young. Because of the high risk of death with any organ transplant and the lifetime reliance on immunosuppressant medications, organ transplants are reserve for only vital organs. It has to be an organ the patient cannot live without.

      A colon is not considered a vital organ, because a human can live without a colon. I was able to get a transplanted colon only because I had lost my small intestines, which is a vital organ, so they transplanted a colon with the small bowels. Without small intestines a person will not only be unable to absorb nutrients, but cannot even absorb water and will die from dehydration within hours without IV infusions. They will not allow just a colon to be transplanted.

      I do understand your predicament and can sympathize. I had a jejunostomy following the loss of my bowels, which was only ten inches from my stomach. After the transplant, I had to keep an ileostomy for a year, so the doctors could use an endoscope via the stoma to check for signs of organ rejection within the small bowel.

      After the year, it was reversed and the colon was reconnected to the ileum so I no longer have a stoma. I never had a J pouch, but have known some people who did and they had nothing but trouble from them (bad infections form in the trap and cause abscess). Unfortunately your only choice is the ileostomy or a J pouch. The only way you could have a colon transplant would be if you lost your small intestines also. Trust me when I tell you that you would not ever want that. An intestinal transplant saved my life for sure, but it is certainly nothing that anyone would want.

      I do wish you the best of luck and wish I had better news for you. The transplant technology is improving everyday — just 20 years ago, intestinal transplants were virtually impossible. Your best hope is that the procedure will soon become so safe and effective and not require immunosuppressant drugs, at that point, they may begin to allow non-vital organs to be replaced. Most kidney transplant patients no longer need to take immunosuppressant agents and about 1/3 of liver transplant recipients can be removed from their medications, so things are progressing. Having to be on these drugs is one reason that only life-or-death cases can have transplant, because they suppress the immune system, placing the patient at higher risk of cancer and infections. If transplants stop requiring these agent to prevent the immune system from attacking the foreign organ, then the rules surrounding transplants will be reconsidered.

      • George
        August 20, 2014 | 8:11 pm

        Thanks for your reply I appreciate it! That’s the answer I was afraid of… I know it’s a long shot but do you happen to know of any viable options overseas or any near by countries to the USA? Maybe other governments have more flexible rules…?

        • Wolverine
          August 21, 2014 | 6:48 am

          George — You’re welcome, sorry the news was not good. I don’t know of any other countries which can even perform intestinal transplants. When I had my transplant, 4 and 1/2 years ago, there were only 6 hospitals in the U.S. who could successfully perform bowel transplant and only one hospital in Canada and I believe there was one in London.

          There are about three times that many hospitals that offer this rare transplant and some of them are overseas. These are probably quite risky as the surgeon have little to no experience, but have been trained by experienced surgeons, such as Dr. Tzakis, who oversaw my transplant. You could continue to research, but besides placing the recipient at great risk for the rest of their life, those type transplants are extremely expensive (in excess of a million dollars when recovery costs are included, because recovery can take more than 5 months in the hospital, including therapy).

          Because of the astronomical costs, I doubt any insurance or government assistance program would finance such an operation if the patient’s life didn’t depend on it. Otherwise, it would be considered an elective surgery (which I doubt exist in the transplant world at this time) and all elective surgeries are typically not covered by insurance and the full cost must be paid for by the patient. So basically, if you could even find someone who would allow this type surgery without it being life or death, you would not find anyone to fund it, which means you would have to have 500,000 to one million or more in cash to pay for it.

          I know all this news sucks, because after losing my organs, I wanted nothing more than to hit the reset or rewind and do it over. Of course, as miserable as having a stoma or J pouch is, it is still far better than being hooked up to TPN 20 hours a day, having to drag an IV pole with you everywhere you go, not to mention the deadly infections which are inevitable with TPN — so it could be much worse.

          I really wish you the best and hope that the technology will advance to the point that people who have lost their colons have better choices than ostomies and J pouches. With UC and Crohn’s becoming more common every day, hopefully there is someone working on an artificial colon, especially since the colon serves so few purposes, other than re-uptake of water and stool formation, which seems like a small thing, but when you’re missing it, it can certainly make life uncomfortable. Good luck. I wish you the best.

  28. Kirsten Steele
    September 8, 2014 | 1:19 pm

    Hi David- I was so happy to find your blog. I am considered pre-transplant at Cleveland Clinic and will be traveling to be evaluated for a multi visceral transplant or complete digestive reconstruction. I have digestive tract paralysis and have had a 2 surgeries that unfortunately did not help. I have no stomach in my actual digestive tract and a small gastric remnant. I now have reactive hypoglycemia and hypoglycemia unawareness and failed all treatmenthe for that. One GI I see at a major University hospital told me that he would let me know when the intestinal transplants became more”mainstream” and getting better results when I asked about intestinal transplants. I immediately made an appt with my other GI because with that answer I knew he was ok just leaving me as I am. I am to young to have this quality of life. At the appt with my other GI he immediately brought up Pittsburgh and Cleveland Clinic. He had been talking and researching already and made the call the next morning. I am blessed to have a great medical team and I’m not angry with my other GI they are just from 2 schools of thought and about a 40yr age difference.

    • Wolverine
      September 16, 2014 | 10:28 pm

      Hi Kirsten, Yes, you are far too young to be stricken to a life on full-time TPN. TPN is great as a short term solution, but too many doctors still believe that it is a long term solution for short gut. Over 30 doctors told me the same. They were sure that intestinal transplant had not been perfected to the degree of safety need, but also informed me my life would be no more than 1 to 2 years long on the level of TPN I required, because I had only 10 inches of small bowel left. Thankfully, we didn’t listen and continued to research. Pittsburgh used to have the finest intestinal and multiviscreal transplant programs around (certainly the oldest), but I do not believe that they are doing those procedure at this time.

      It doesn’t really matter, because the brain-child behind Pittsburgh’s success was Dr. Kareem Abu-Elmagd (and Dr, Andreas Tzakis), who were the pioneers of the first successful bowel transplants and both now work out of the Cleveland Clinic Ohio (though Tzakis spend more time at the Cleveland Clinic Weston Florida).

      I have sent several other short bowel patients Dr. Kareem’s way and he has already signed on to treat several of them. The Cleveland Clinic is the place you want to go. Dr. Tzakis, the brilliant surgeon who headed up my transplant also works out of the Cleveland clinic, although he is not doing surgeries at this time, but Dr. Kareem is. Both Kareem and Tzakis were working at Pittsburgh in the 1990s when the first successful bowel transplants occurred. They are two of the best, although the program at Jackson Memorial in Miami is also still one of the finest programs with the highest survival rates and one to also consider. (My transplant was performed at Jackson, Miami, but Dr. Tzakis was head surgeon there at the time. The doctor who replaced him is very good and had performed more intestinal transplants in the last 10 years than any other surgeon. He has also improved the survival rate and recovery time since I was there. It is a very good program)

      I have been working with another brave young woman who suffered paralysis of her bowels. Dr. Kareem has taken her case, but as I had pre-warned her, he has only promised to remove the paralyzed bowels and start her on TPN. The rules of bowel transplants only qualify those already missing their intestines and are failing on TPN. Since so many people fail on TPN, Dr. Kareem has promised her that he will list her for the transplant at the very first sign of a problem (liver damage, arterial damage or multiple sepsis from TPN). Those are the most common problems which qualify a TPN patient for a transplant.

      People on part-time TPN (People who still have more than half their intestines and only infuse TPN a couple days a week) can be sustained indefinitely on TPN, but those of us on full-time TPN (24 hours a day, tethered to an IV pole — a terrible life) usually suffer some problems. The lipids used in TPN can damage the liver in a few years and the high sugar content of the TPN can destroy the access arteries (Vena Cava) in a few years also. Any signs of these beginning to happen can qualify the patient for a transplant. The high sugar content of TPN also promotes the growth of pathogens in the catheter or port. This is what happened in my case. After back to back systemic infections (sepsis), which placed me twice in septic shock, I was qualified and listed for organs and had a full bowel transplant within months. I spent about 6 months on TPN.

      If I am understanding your condition correctly, and you still have your bowels, but they have become paralyzed, then the course would be the same as with the other young lady. You should meet with Dr. Kareem Abu-Elmagd at the Cleveland Clinic:

      http://my.clevelandclinic.org/staff_directory/staff_display.aspx?DoctorID=17281

      and let him review you case. Squeaky wheels gets the grease in these things, so you must stay vigil and tenacious and you will get what you need. Yes, you are far too young to be tethered to an IV pole and having to deal with stomas and ostomies for the rest of your life (which would be a short life on full-time TPN. The doctors told me I would only live about 2 years on TPN — that was over 5 years ago. I am 5 years out because I got the transplant. Otherwise, I would have been long gone by now).

      I stay in contact with many other patients — the most experienced one is a man who had both his bowels and liver transplanted in 1992! He is one of the longest living bowel transplant recipients and he is still going strong. With the transplant you will no longer need TPN, nor will you have a stoma to deal with.

      I had a stoma for a year after the transplant (which is required for all bowel transplants), but the stoma was reversed one year later and I have nothing left there but a small scar (looks like a second belly button). In nearly every other way, I live normal life. Please be patient and you too can return to a normal degree of life and please keep me appraised of your progress. I will help in any way that I can. You can email me from the contact page (Every time I put my email address in one of these comments, some robots scan it and I get tons of spam mail, so please, just use the contact form the first time and then I can send you the address for faster contact in the future — I will also send you my cell number so you can contact me anytime 24/7) I work with many other patients and have been successful at placing several short bowel patients with the right surgeons and many of them are awaiting transplants as of this time. I hope I can help you also. Thanks you for writing.

  29. Mickaela Perez
    October 9, 2014 | 11:33 pm

    Hi! Thank you for posting about your intestional transplant! Our son(2 months old) was recently diagnosed with Microvillous Inclusion Disease and we are considering small intestine transplant for him. All of the parents we have talked to so far are anti-transplant and pro-TPN, but we are unsure that this is the right route for us and for him. We’ve been trying to do as much research on this as we can, so to find someone who actually lived through it is great. We are transferring him next week to Pittsburg because of their great success rate for transplant. We decided that we wanted him at the best hospital if that was the route we decided to take, so any info you have would be greatly appreciated. We are mainly wanting to know the quality of life of TPN vs Transplant because Jake will probably never eat or drink if he stays on the TPN so we just want to make the best most informed decision we can! Thanks in advance!!

    • Wolverine
      October 11, 2014 | 10:54 pm

      Hi Mickaela. I am so sorry to hear about you son’s intestinal issues. Thankfully, he will have options which were impossible just a few decades ago. While recovering from my transplant, my wife and I met a young lady who was born without her intestines. She had lived on TPN for the first 8 years of her life, until the TPN damaged her liver (which is quite common, especially in children). She had undergone a multi visceral transplant at 8 years old, which included a new stomach, pancreas, spleen, liver, small and large intestines.

      At the time we met her, she was 18 years old and graduating from high school! I think that was amazing, because such a thing would have been impossible when I was a child — my parents would have had no hope had I been born in the condition that she was. Intestinal and multi visceral transplants have much improved in the last decade, so your son’s prognosis is even far better than this young woman’s would have been at the time she had the transplant.

      There were many children at Jackson Memorial on the pediatric transplant floor. The doctors claimed that the children typically do better with these transplants than the adults do. The University of Pittsburgh is certainly one of the best programs (they were the first to successfully transplant intestines).

      I am a bit surprised to hear that this is where your son is going, because I had recently heard that Pittsburgh was not offering intestinal transplants from one of the other patients I am working with. I know that Dr. Kareem Abu-Elmagd (who was the head of the intestinal and liver transplant at Pitt.) had moved to the Cleveland Clinic in Ohio. I am assuming that they have replaced him and are now offering the transplants again. This does happen. When Dr. Tzakis left Jackson Memorial, they had to suspend intestinal transplants until he was replaced, but the doctor they now have has maintained the same excellence and survival rates are as high as ever.

      Jake would be able to still eat and drink on TPN. I was told that I didn’t have to eat or drink while on TPN, but the doctors typically permit it. Eating and drinking does cause some problems while on TPN (mostly dehydration issues, but these can be resolved by higher infusions of Lactated Ringers). In other words, the doctors would prefer a patient not eat or drink, but they had found that patients who were forbidden to eat or drink tended to fail on TPN. The doctors told us that they do not understand why, but the instinct to eat and drink is just so strong, that the patient can go into depression, which can be far more series than the problem caused by eating or drinking.

      Besides cranking up the fluid infusion, there are other things that can help. A lot of it has to do with what the patient eats and drinks. Certain foods (sugar being the most problematic) can cause dehydration. If Jake ends up on TPN for a time, I can help you out with adjusting his diet to lessen the likelihood of dehydration. Even more importantly is recognizing the signs of dehydration. I can also help you there. It is very important to detect it as soon as possible, because it is easily corrected when caught early. Severe dehydration can damage the kidneys, so it is best avoided.

      Jake will most likely have to spend time on TPN. An intestinal transplant is always considered a last resort option, even though it has been proven to have far greater long-term survivability than TPN. If successful, a transplant certainly improves the quality of life over TPN. Much of this depends on how much bowel he loses and how much TPN he will require. TPN can be successfully sustained for many years when it is only a supplemental infusion. It’s when TPN is a full-time solution that problems arise. I guess what I am basically telling you that you do not have to worry that you will bear the responsibility of making the right decision — by the time the decision to have the transplant becomes a reality, it will be the only choice.

      The decision for me to have the transplant was a no-brainer, so my wife and I would never have regrets, even if something awful had happened. I was not going to survive very much longer on TPN. Unless there already exists a reason that Jake is not a good candidate for TPN, he will probably have the bowel removed and placed on TPN until a problem arises. In children, the most common reason for the transplant is liver damage from the TPN. If you have read my article “The Truth About Soy” you are aware of the damage that the soy based Intralipids can cause on the liver.

      At the time I was on TPN, it was impossible for anyone to have the Omegaven (a fish oil based lipid used Europe, which causes no liver damage). It has become a bit easier to get permission to infuse the Omegaven for children (still impossible for adults). If Jake ends up on TPN, you may want to attempt to get him the Omegaven, if possible. It is terrible when a child must also have a liver transplant simply because the soy based lipids used in the U.S. kill their perfectly healthy liver. I am not sure what politics is stopping the FDA from approving Omegaven for use in the U.S., especially when it is well known that the Intralipids destroys livers.

      I am surprised that so many of the parents are pro-TPN, probably because they are misinformed about intestinal transplants. I wouldn’t be surprised, since every doctor I had prior to the transplant was very misinformed. They all told me it was impossible and tried to talk me out of pursuing it or getting my hopes up. My wife refused to listen and continued to research. I had so many problems on TPN. There is little doubt that I would no longer be around had I stayed on TPN. I was constantly getting line infections and the last septic shock nearly killed me. During the 6 months I was on TPN, I only spent about 3 weeks in total at home. The rest of the time I was hospitalized for one complication or another — mostly infections.

      I can never regret the transplant. Since the transplant, I have never been sick. I take two medications daily and otherwise live the same way I did before I lost my intestines. Not everyone recovers the same. I keep in contact with many other patients and some have had a few more complications, but I do not know one of them who regret the decision to have the transplant. Every one of them say that life on TPN was far worse.

      There is every possibility in the world that Jake will also be able to live a fairly normal life. (just like the young woman I wrote about). If he has the transplant, the only difference will be having to take a couple of medications daily and be a bit more cautious about cuts, scrapes and burns. Please feel free to write me with any questions that you may have. I am more than happy to answer whatever you can think of.

      I know several other intestinal and multi visceral transplant recipients I can put you in contact with. Talking to those of us who have been through it is the only way you will get the true story of surviving such a transplant. I understand how many doctors and parents can frighten you about transplants, but most of them are not very familiar with the procedure.

      Thank you for contacting me and I wish the best for Jake. The world of intestinal transplants is always improving, so his chances are better than any of us who proceeded him.

  30. George
    October 17, 2014 | 11:34 am

    Hi Wolverine. I was wondering why do you still have to take Prograf if you took Campath before the transplant? Doesn’t Campath wipe out all your T-cells and trick your body into accepting the organ? Is Prograf just a precaution or will your d
    body definitely begin to reject your transplant if you stop taking it? Thanks!

    • Wolverine
      October 20, 2014 | 10:16 am

      Hi George. This is a great question, I’ll try to answer it as best I can with what knowledge I have. Prograf also inhibits the production of T-cells, but doesn’t lower white blood cells (my WBCs are at normal levels on Prograf). Campath wipes out both T-cells and WBCs, which really leaves the patient at high risk of death if they go septic during that period.

      Campath destroys the immune system completely, but only for a time, so the effects are not life-long. How long the Campath suppresses the immune system varies from person to person. I was told that the most aggressive assault on the new organ is within the first week or so of the transplant (especially in the first 24 hours) and this is why the Campath is used. The doctors do use Campath in the event of organ rejection, even years after the transplant, but every use of Campath increases cancer risks, so it is best to use it as minimal as possible.

      Because we generate new cells in our organs as old ones die, it is possible that a transplanted organ will totally become the recipients organ in time (the cells that replace the donor’s dying cells will have the recipient’s DNA and no longer be attacked by the immune system). My surgeon told me that they have been successful at removing about half of their liver patients from Prograf (most kidney patients no longer take Prograf after a couple years). So far, no intestinal transplant recipient has been able to be removed from Prograf.

      You would think this is based on size, but the liver, by weight, is the largest organ in the human body, so this is probably more due to the fact that liver cells are regenerated more often than intestinal cells are.

      I was made aware of the fact that Prograf will be life-long for me while I was recovering at Jackson Memorial. An Iraqi man was flown into the hospital in critical condition. We were told that he had stopped taking his Prograf and went into severe organ rejection. He was over nine years out from his intestinal transplant and was taking very low doses of Prograf and doing so well that he thought he no longer needed it. He was wrong. He did survive his second transplant though.

      Just like the Campath, the Prograf only works for a period of time and has to be maintained, at least until the point that the organ has been fully regenerated and will no longer be seen as an invader by the immune system. I guess no one has found out yet how long that takes for intestines and since intestinal transplants are so rare, it could be a while until it is found out.

      Because Prograf is nephrotoxic and will do damage to the kidneys in time, we are always having the Tacrolimus levels in our blood monitored so that we can lower the dose of Prograf over time. I am able to take far lower doses of Prograf than I did four years ago and this should continue to lower, but I will always have to take some Prograf. There is a clinical number (about 5-7) that must be maintained in the first years. If a patient has experienced no rejection in the first 3 years, we are allowed to lower our maintenance level below clinical (which is a good idea because of the kidneys).

      Thanks for writing and for the question. Best wishes.

  31. carol
    March 22, 2015 | 12:15 pm

    I found your blog while doing research as to why my husband might be failing at this time. He had a multivisceral transplant at UPMC in 2005. (Dr. Kareem) He enjoyed quite a few years of health after that. More recently he has been failing quickly, without really knowing why. He has been on long-term cortisone along w/prograf, and I suspect that to be part of the issue. He has lost his appetite, kidneys are in stage 3b of disease, but mostly he is just extremely fatigued. Sleeps most of the day, can’t really get out anymore, no appetite…30lb weight loss since Jan. He is so tired, and says he “just wants to go home.” He was on life support prior to the surgery, and had active, chronic UTI…no one would take him, but Dr. Kareem took a chance and def. saved his life…he has had no rejection of organs transplanted (pancreas, liver, sm. intestine.) As a matter of fact, I believe Harold, former commenter, we met at clinic several times in Pittsburgh. Not sure if he’s with us anymore, according to nurse there. Anyway, have you in your research heard of people just simply failing after years of immunosuppressant therapy? Any thoughts would be welcome. Thank you, and God bless.

    • Wolverine
      March 26, 2015 | 8:51 pm

      Hi Carol. Thanks for writing and I apologize for the delay in respoding. My father has been very ill (several strokes in the last 2 months) and I have been spending a tremendous amount of time with him in the hospital since he will not be with us much longer.

      I am very sorry to hear about your husband’s condition. I have not heard of any of the patients that I know complain of these symptoms. I do know that Prograf is toxic to the kidneys ad some of the reipients who I know that have been on Prograf a long time have had to have kidney transplants. The Cordisone could have also made thisonset even faster.

      Some of these other symptoms could be the result of the kidney function being diminished. Has Dr. Kareem spoken to you about whether your husband is a candidate for a kidney transplant? i met one young woman while I was recovering from my transplant. She was 18 years old at the time and had been born without intestines. She received a multivisceral transplant whenshe was 8 years old and had returned to Jackson Memorial Hospital because she was in renal faiure.

      It was very difficult to find a match for her because they said her blood antigens had become very complex because of the transplant and many transfusions she had received (eerytime we have a transfusion, our blood antigens become more complex as they take on the donor’s antibodies). She rejected the firt kidneys they transplanted and they ahd to be removed. She did accept the second kidneys, which were transplated in 2011 ans she is still doing fine.

      This poor young lady has suffered a lot in her lifetime. Prior to the kidney transplant, she had been rushed in for heart sugery because the renal failure caused a congestive heart failure. Have they tested his blood to see where his Creatinine or BUN numbers are? Failing kidneys could be causeing some of these symptoms (sleepiness and fatigue), the rest could be depression.

      Renal failure is very common after years of immunosuppression. I would certainly first have the kidney numbers looked at. I woud assume that the doctors have been watching those numbers, so if they haven’t spotted a problem, I guess it may not be the kidneys. Has he had any dialysis because of the kidney problems and if so, did he feel any better after the dialysis. I’m just trying to get more information, if there is any, to see if anything clicks. Right now, my first thought is renal function, but maybe some other symptoms he is having may trigger another thought.

      Thanks you for writing and I wish I could be more help. Is he having any other symptoms which you did not mention here or is it only the fatigue that he is suffering at this time?

  32. mary royal
    June 23, 2015 | 11:34 am

    i just read your blog on intestinal transplant.
    i had radiation in 1987 and now i have radiation colitis
    the scar tissue is making my intestins smaller.
    would this surgery work for me?
    mary royal age 75

    • Wolverine
      June 27, 2015 | 4:20 pm

      Hi Mary. Sorry for taking so long to reply. My father has been very sick over the last several months and required a lot of help. He finally passed away on Wednesday and though it is a sad affair, we are actually relieved he finally passed away because the many stokes he suffered since January had left him both mentally and physically crippled and it is always difficult to watch anyone slowly die that way.

      Only once your intestines stop working, are removed or are threatening your life could you be eligible for a transplant. Most of the recipients I know, including myself, had already lost most all of their intestines before being approved for a transplant. Though, I know one woman who was able to have her intestines removed and new ones transplanted in one operation. Her condition was cancer. She had a congenital disease called Gardner’s Syndrome, which had taken her mother life at a young age, so when she was diagnosed with the same and many tumors were found wrapped around her bowels, she was approved for an intestinal transplant.

      Your age could be a factor, but probably not a large consideration as long as your health is good otherwise. The surgeons just want to only select those who will have a good probability of surviving such an operation. Have you bowels become ischemic yet? Were are you located? Are you in the United States? I may be able to provide you with the contact information to surgeons closest to your area for you to talk to. You can email me the information and I will see what I can do for you. At least talking to some surgeons or their coordinators can help to answer most of your questions. Thanks for writing and I hope I can help.

  33. Cricket
    August 26, 2015 | 7:11 am

    I bawled through most of your post. My son was born Gastroschisis and a mid intestinal Atresia. He only had 30% of his bowel left due to resections. They say he should have enough bowel to be ok on a feeding pump. But he is 8 now and looks 4 or 5. Even as a baby his body has always rejected the stupid formulas but they won’t listen to me. At this point they think he might have MID or Hirschsprung’s disease and it was just missed at birth because of all his other problems. It kills me because I’m fighting so damn hard for my sons life and they don’t live with him they don’t see what I see. They are leaving him on nightly feeding thru an NG Tube until they figure out what’s wrong but it’s just making him worse. I even told them to test me to see if I can give him some of my bowel but they said that was only a last resort. So I don’t know what to do because he’s had so many surgeries already if there is a way around it I want to find it. But he has and has always had completely water diarrhea. He even has accidents because it comes so quickly he can’t always keep it in. He’s had a Nissan fundoplication so he can’t burp either all the gas has to come out re tally which just causes more accidents. I just want my child to know one damn day without suffering. They had him on gastronomy bag for awhile and I fought for two months for them to find a way to reconnect his bowel and they finally did. But after 8 years the fight has weakened and I just don’t know what to do anymore. I just wanted to thank you because reading your story made me less afraid of it coming down to that surgery. We go next week back to the dr and I plan on kicking their ass or finding another doctor. I don’t have many doctor options I’m a single mom going to college with a special needs child. So I have a state medical card which greatly limits the places we can go. But I’m not giving up ever. I know all parents think their children are special, but well he’s not special like that he’s like a light and bright ball of sunshine. Everybody who meets him gals instantly I. Love he talks like a 40 year old he’s so wise and odd that he attracts people like bees to sugar. It’s amazing to watch. And to now I have to see the little guy who is literally a sun to so many wishing he wasnt even alive because he’s tired of suffering. Sorry I just needed to tell this to somebody thank you for your story it really has helped me to be a little less scared. Thanks

    • Wolverine
      September 3, 2015 | 6:32 pm

      Hi Cricket. I am so sorry to hear about your son. It grieves me to hear about so many young people cursed with serious health problems at such a young age. What happened to me was a tragedy for sure, but at least I had good health for most of my life. When I was at Jackson Memorial, there were so many more children getting bowel transplants than adults. I was glad that the pediatric ward was on a different floor than the adult transplants were. I did meet someone the children, but it would have tremendously more stressful to have to encounter the large number that were there.

      Your son does sound like a very special person. I met a young woman who had been diagnosed with Crohn’s disease at the age of 9. When I met her she was 26 years old and there to have a multi visceral transplant which included 6 organs to be transplant, basically her entire GI tract from the esophagus down. I was amazed at her attitude. She had spent most of her life in hospitals and had undergone 32 operations to slowly resect all of her bowels over those years. I can’t imagine spending most of my birthdays, Christmas and every other holiday within a hospital. Unfortunately, she passed away at the age of 31 just two weeks ago, but she kept that positive attitude right to the end.

      I meet so many adults who suffer very minor health problems but like to bitch and complain and harbor a “woe-is-me” attitude. On the other hand, I have met so many people who were born or spent most of their life fighting some very crippling and serious health problem and they almost always have a much better attitude and outlook than those blessed with good health. This always makes me feel pretty guilty for complaining about my problems, so I try my best to learn from them. I wish I could meet your son, I’m sure he would be an inspiration to me. Thanks for writing and telling your story.

  34. Tammy Yergey
    September 25, 2015 | 6:19 am

    I have been recommended by my neoroendocrine tumor (NET) specialist, Dr JP Boudreaux, that an MVT transplant should be my next action. Of course, I’m scared to death, but I have had 3 auguries (2 during the same stay) in the last 7 months trying to fix my small bowel. He recommended U of Indiana or the hospital in Miami, but I live in Lawremce, KS. University of Nebraska would be so much closer for appointments etc. do you know of any statistics showing success rates or long term survival for the different medical centers?

    Thank you.

    • Wolverine
      September 26, 2015 | 3:15 pm

      Hi Tammy. I can certainly understand your fear, but usually a transplant is not recommended by doctors unless it is the only option to improve your quality of life or best choice for long term survival. I am not familiar with the program at the University of Indiana, but Jackson Memorial in Miami is one of the best transplant programs. Jackson is where I had my transplant in 2010. The University of Nebraska had the highest survival rates of all the hospitals that offered intestinal and multi visceral transplants. I am not sure where their present stats are, but historically they have been one of the finest programs there are.

      Have you spoken with anyone at Nebraska? How do you feel about the transplant? It’s really important that the patient feels up to it and that it is the best option for them. I was so sick and had suffered septic shock several times from the TPN, so I had no doubts about having the transplant. I knew that I was not going to live much longer without it. I remember that the chief surgeon told me to think about it and give him my answer in 24 hours and then he followed up by saying, “ I don’t want you to just say ‘yes’, it’s either ‘hell yes’ or ‘hell, no!’”.

      The patient really has to be committed, because your survival is going to be dependent on your level of commitment. I’ll be real honest with you about this; three of the other recipients who have died over the last 5 years was because they became depressed and stopped taking their medication. I knew only one recipient who passed away as no fault of his own; he just had too many complications because he was diabetic. All of the rest who have died was a direct result of them not taking their medication properly.

      If you’re committed to the lifestyle, you will survive the operation, because every one of the recipients I met at Jackson survived the initial operation and did well for the months following because they were hospitalized and the nurses and doctors made sure their medications were taken properly. I have never had any sign of organ rejection, but I have always taken my medication on time and follow all of the other rules, which I won’t cover here, but I saw many of the other recipients ignore these other rules and not strictly adhere to them.

      I hope you will keep me appraised of your situation. If you need the transplant, Nebraska would be a good choice. I know that Nebraska, Pittsburgh, Cleveland Clinic and Jackson in Miami have been doing intestinal and multi visceral transplants longer than most all other hospitals and have very good programs with high survival rates. Thanks for writing.

  35. Staci Golden
    October 1, 2015 | 8:48 am

    I received my small intestine on October 10th 2007! God bless my young doctor for knowing about Pittsburgh and Dr. Kareem! Happy and healthy 8 years later!

    • Wolverine
      October 2, 2015 | 4:57 pm

      Dr. Kareem is most certainly a legend in the intestinal and multi visceral transplant world. Dr. Andreas Tzakis performed my transplant in 2010, he and Dr. Kareem worked together at the University of Pittsburgh in the early 90s to make intestinal transplants a reality, giving people like you and I a second chance at life. Congratulation on 8 years of improved health and quality of life. TPN is no life for anyone. Thanks for writing!

  36. Terri
    October 1, 2015 | 7:45 pm

    Would this help those with GP, Gastroparesis? My friends are literally starving to death and as you stated in your article, getting deadly infections. Please let us know. Thank you!

    • Wolverine
      October 2, 2015 | 5:49 pm

      Intestinal transplant and now works at the Cleveland Clinic) and he sort of confirmed my suspicions. He agreed that the only plan to get her ultimately to a transplant would be for him to remove all of her effected intestines and place her on TPN and watch her closely. The minute she showed any signs of not tolerating the TPN, which is highly likely, he will list her for the transplant. Dr. Kareem agreed that she needed the transplant, but he too has to work inside the rules.

      As I stated, even losing all of your bowels is not sufficient to qualify. People who do well on TPN are expected to continue treatments with TPN infusions, because a life after a transplant can be much better, but the patient will forever be on immunosuppressant drugs and be at high risk for infections and cancer. I only qualified because I had suffered back to back systemic infections due to pathogens colonizing in the catheter which infused the TPN.

      Being super high in sugar and other nutrients, TPN not only has what you need to live, but also what microbes need to thrive, so one tiny microbe gets in the TPN line and within hours multiplies to billions of microbes due to the high level of calories available to them. Since TPN is infused directly into the heart, the infection is flushed quickly through the patients bloodstream causing a system wide infection with fevers in excess of 105 degrees F and septic shock, a very life threatening state. I was twice in septic shock from the TPN, so I was listed for the transplant.

      Other than multiple systemic infections, there were 2 other criteria for a transplant that were quite horrible. The first was loss of the access arteries, so the patient can no longer be infused TPN and will die of malnutrition. This is due to the very high sugar content of TPN which must be infused through a surgically implanted port where the catheter is inserted into one of 6 available arteries which lead to the vena cava. The catheter is inserted into the vena cava and to the heart. If TPN is infused in any smaller veins or arteries, the sugar will destroy them within hours. The sugar takes longer to destroy the six large arteries, but it will always ultimately destroy those arteries. Only when all 6 arteries are gone can the patient be accepted for a transplant.

      (In my article entitled “The Effects Of Sugar On The Arteries”, I make my case that it is the high carbohydrate diet of americans which leads to the problem of heart disease, not fat. The sugar damages the arteries, causing inflammation which allows cholesterol, white blood cells, calcium and other thing to become trapped within the open would caused by the sugar, This is where a clot will form. It’s pretty interesting, ground breaking and backed by real evidence based on what I was told and saw happen to those on TPN.)

      The last one is almost as bad. The lipids that are infused to meet the patient’s fat requirement are made of soy here in the US and notorious for killing the liver of the patient (in Europe doctors use a fish oil based lipid for infusion which causes no liver damage, but the fucking FDA will not approve it for use here in the states. This has nothing to do with its safety, they won’t approve it because the patent is held by a European drug company and the soy shit is held by an American company. People are dying so some american drug company doesn’t lose profits to a superior product. That’s our FDA for you — bought, sold and paid for!).

      I was told that with the volume of TPN I needed, the lipids would kill my liver within 2 years. This kind of proves that soy isn’t the health food some people claim it is. (I cover all this and the stuff about the Omegaven in my article “The Truth About Soy) — I hope you read it.) Researchers do not know why the soy causes cirrhosis of the liver, but it will do it to every patient, especially children who take damage from the soy lipid much faster than the adults.. Once a patient has sustained serious enough liver damage, they can get a bowel transplant. These people will also have to have a liver transplant along with the bowel. I met several patient who lost their livers to TPN and were there having a multi visceral transplant including a liver.

      You can see how strict the rules are at this time. I am afraid that your friend would have to follow the same strategy as the other young lady I have been corresponding with. It would be best for them to do the same and get in touch with the nearest transplant surgeon and present their case as she did, Talking to Dr. Kareem really helped lift her spirits as she could see he was on her side and would do everything he could to ultimately get her the transplant, which he also agreed would improve her life and give her the best chance.

      I will help you in any way I can to get the in touch with a surgeon. Please feel free to write me with any other question you may have and I will do my best to answer them. My email contact is on the contact page. I am much faster to respond to emails than comments on the blog. I give the emails priority because I am working with so many different people who have contacted me from this site. So far, I have helped 12 short bowel patient get in touch with surgeons and ultimately get a transplant.

      Like Dr. Kareem, I feel that your friends only real hope at a better life is by a transplant and will do whatever I can to see they get one. Thank you for writing and I wish all the best for you and your friends. P.S. you must be one hell of a friend to be doing this type research on their behalf. My wife did that type of research, so I know how difficult and time consuming (and stressful) that job is and you would expect that dedication from a spouse or parent, but very unusual for a friend to be so dedicated. I need more friends like you — hell I guess most people need a friend like that because very few know one. All the best — Wolverine.

    • Carissa
      October 1, 2016 | 3:35 am

      I have GP and CIPO and was starving to death. Dr. Kareem saved my life in 2006 at UPMC. 🙂 I was TPN dependent, 62 lbs, and had sepsis so much I had very few veins left to feed me anymore.

      • Carissa
        October 1, 2016 | 3:38 am

        I am the president/founder of G-PACT, if you know about us. The leading non-profit for GP, CIPO, and colonic inertia. I started it in 2001, and the team kept it alive while I recovered and I’m back at it again, I listed my story below too…just a teensy bit if it! It’s an encyclopedia series really! 😀

  37. Terri Zapata
    October 1, 2015 | 7:49 pm

    *Corrected email. Thank you!

  38. Becky
    December 30, 2015 | 6:44 pm

    Can you email me more information so I can show my husband. He had ulcertive colitis and has a I pouch now a J potch and transplants aren’t possible thanks to doctors. I want to help him.

    • Wolverine
      January 17, 2016 | 4:21 pm

      Hi Becky. Yes, No one will do a transplant for a colon. The colon is not a vital organ and though a J-pouch and ostomy bags suck, transplants are reserved for only those organs that we cannot live without. I had lost all of my small bowels and that is a very vital organ, since we will die without it.

      The reason for this is because any transplant requires the recipient to remain on immunosuppressant drugs for life, which places the recipient at high risk for infections and cancer (without crippling the immune system, it would attack the transplanted organ as an invader since it has a different DNA than the host). This is why it is a last option, because even being in that immunocompromised state is preferable to death. I now have an incurable cancer (Multiple Myeloma) because of the immunosuppressant agents, but I would have died more than 6 years ago without the transplant and I do plan to be around for a while longer (since I have responded well to the cancer treatments so far), so it was certainly worth taking the risks associated with the transplant in my case.

      The transplants are not easily survivable either at this time. There were 5 other patients at Jackson Memorial who had the same transplant as me in 2010. The last of the 5 died last year. 3 passed away in the first year and another died about 3 years ago. I am the last survivor of that group and I nearly died only 6 weeks after the transplant when I had a systemic infection which put me in a coma and on a respirator for 2 weeks.

      All of the doctors told my wife I wouldn’t survive the infection and that if I did wake from the coma, I would probably never come off the respirator and would certainly have brain damage from the low blood pressure I has sustained. Many of the doctors who worked on me are working on ways to improve the transplants and hope to one day be able to do the transplants without the immunosuppression. It may not be far away, since most of the kidney transplant recipients can come off the drugs in a few years and about 50% of the liver transplant recipients have been able to come off the medications too.

      So far, no intestinal transplant recipients have been able to do this. Those that tried, suffered with grave results. If they ever achieve this goal, then I imagine transplants will be available for those who lost non-vital organs, like your husband, because the risks afterward will be low.

      I had an ostomy bag for the 6 months I had no intestines and then for a year following the transplant, so I know what a crappy life that is. I never had a J-Pouch, but do know some people who have had them and they can also be a pain because they are prone to infections and abscesses. I hope your husband can avoid any of those problems, because his alternative is an ostomy bag. Thank you for writing and sharing your story. Feel free to email me from the contact page (I can’t put the email here or a spider will tag it and flood me with spam mail) if you want any other information. I am happy to provide you and your husband with any help I can. Thanks again.

  39. Braden
    January 24, 2016 | 1:22 am

    Hey Wolverine,

    I was getting so excited and hopeful reading your post until the last response to Becky where you laid out the complications and the need for immunosuppressants. My wife has appendix cancer, which is extremely rare. In her case, it’s the worst kind and extremely aggressive.
    Her weight has been steadily dropping because she can’t keep food down for more than a couple of hours without throwing it all back up.
    We have been to the ER 5 times for a partial bowel obstruction in which she received NG tubes in her nose to suck out liter upon liters of bile.
    For a while the doctors thought it was a result of scar tissue from her tumor removal surgeries in which they removed her omentum, appendix and performed a full hysterectomy.
    Two weeks ago, however, it was revealed to us through another MRI that all of her intestines are covered with tumors that were never found in the initial reductive surgery. That being said, they pretty much said we were screwed and want us to stay on chemo and get a GJ tube put in. For now she has the G tube and TPN until the scar tissue firms tightly around the G tube and then we will perform the J tube procedure as an actual feeding tube and pull the TPN out.
    I kept wracking my brain wondering if there was a procedure that could just replace the intestines completely and was kind of made fun of for even thinking it was possible. My wife already assumed she would not be a candidate because of the cancer so she doesn’t want me to pursue it further.
    I’m sure it’s a huge risk anyway based on everything you’ve said, but have you heard of cancer patients getting the transplants as a way to get rid of intestines infested with cancer?

    • Wolverine
      February 5, 2016 | 10:19 pm

      Hi Braden and thank you for sharing your’s and your wife’s story here. Yes, I have heard of several cases where intestinal transplants were used to replace bowels damaged by cancer. In fact, the young woman who was assigned to me by Dr. Tzakis as my Mentor (which is just a patient who has successfully survived a transplant to help a new patient with what to expect) had a congenital type of bowel cancer named Gardner’s Syndrome. Her mother had died at quite a young age due to this cancer, so the doctors knew her chances were high of being diagnosed with the same.

      Her bowels had active cancer throughout her small bowels, but all of the cancer was removed with her native bowels. Her transplant was done in 2007 and she is still doing well. So, bowel cancer will not necessarily exclude her as a candidate, but in fact, may be her best hope. I would continue to pursue a transplant as a possible option.

      Immunosuppressant medications, mainly Prograf (Tacrolimus; generic), are necessary to prevent organ rejection. In Becky’s case (more specifically, her husband’s case), a transplant is not permissible because his small bowels were still fine and was only inquiring about a colon transplant. Since immunosuppressant medications are required for life with any bowel transplant, only the loss of the small bowels qualifies someone for a transplant. A colon is not a vital organ and therefore cannot warrant the risks of immunosuppression.

      My wife and I were also made fun of for inquiring about intestinal transplants, but we see who is laughing in the end. Every doctors was giving me less than 2 years to live based on the high infusion rate of TPN I required after losing all but inches of my small bowels. That was more than 6 years ago. If I can help in any way, with any other information, please feel free to email me from the contact page. Thank you again for sharing your story. I wish your wife all the best of luck.

  40. Marilyn Foley
    January 25, 2016 | 4:57 pm

    Congratulations! I am so happy to hear of your successful small bowel transplant. Our son Jeremy lost most of his small bowel in 1999 due to a non-malrotation mid-gut volvulus. We were living in Greenville, SC and once Jeremy was (sort of) healthy enough, we went to Pittsburgh. However, Dr. Reyes did not think Jeremy was a good enough candidate so we finally went to Jackson (Dr. Tzakis) & Jeremy had his transplant on 7/6/2000. He is doing GREAT & off ALL meds!

    • Wolverine
      February 6, 2016 | 12:42 am

      Hi Marilyn. Thank you for writing and sharing your son’s story. Dr Tzakis did my surgery at Jackson Memorial Hospital in 2010. I am happy to hear that your son is doing very well. When you say ALL meds, is that including Tacrolimis (Prograf)? I know that it is a dream of Dr. Tzakis to one day have intestinal transplant recipients to come off of Prograf, but I was not aware that anyone yet has been able to stop taking Prograf successfully.

      Last year at clinic, Debbie told me that about half of their liver transplant recipients have been able to successfully come off of Tacrolimus, but she said that none of the intestinal or multi-visceral recipients have. Your son may have come off of the medication since then. I would like to know more about this if that is what you meant. In 2013, one of the woman who had her transplant at Jackson the same year I did stopped taking her Tacrolimus and she passed away pretty quickly after stopping the medication. She was a multi-visceral transplant, so it was when her liver shut down that she went comatose and died the same day she dropped into the coma. I am not sure why she stopped taking her Prograf because I have gotten different stories from friends who were closer to her than I was.

      Thanks again for writing and I hope your son continues to do well. Do you follow up with Dr. Tzakis since he moved to Weston, at the Cleveland Clinic? Or have you stayed with Jackson? Best wishes for you and your son.

  41. Dani
    February 5, 2016 | 11:40 pm

    I don’t wanna say too much incase I send this only to find this website no longer exists.
    I’m glad to see your trying so hard to enlighten this much needed cause. My heart, sorrow, pain came flooding back at all memories waiting for my infant son to receive a unheard of complete intestinal, liver transplant. He had less than 6% due to medical misdiagnoses. TNT destroyed his precious body at 11 1/2 mother’s day he died in my arm’s. This was in 1998.

    • Wolverine
      February 6, 2016 | 12:27 am

      Hi Dani, and thanks for writing. The website still exists and I am still alive and kicking, even if I haven’t published anything new in a while. It has not been because I have not felt well. I have been doing very well over the last few years. I have been involved in many other projects which I have always wanted to finish before my time runs out.

      I am sorry to hear about your son’s ultimate fate, but he was surely strong and did considerably well considering the early state of intestinal transplants at that time. Very few people even survived the first year following an intestinal transplant in that time. I owe a lot to your son and those who came before me as the early survivors helped to perfect the procedure to elevate survival rates. Although the first year survival rates have improved greatly, unfortunately, the 3rd and 5th years rates have not improved as well.

      There were 6 intestinal and multi-visceral transplant recipients at Jackson Memorial Hospital in 2010. Since I suffered life-threatening complications following the transplant, I spent seven months in Miami recovering. Because of that, and the fact I was the first intestinal transplant performed that year, I was able to make friends with all the other class of 2010. Unfortunately, I have watched each one of them pass away over the last 6 years. The last, a woman who was the youngest of all the adults done in 2010, just died in October of last year.

      TPN is extremely damaging to the human body when full-time infusions are required. Since few people survive losing all of their intestines, I do not think that TPN was designed with full-time infusion in mind. The most irritating ting is that the deadliest parts of TPN go completely against what the medical system likes to teach about nutrition. We are told that complex carbohydrates are far healthier than saturated fat, but it is the dextrose (which is what complex carbohydrates break down to after coming in contact with saliva) which erodes away the access arteries needed to feed the patient. This also proves that it is the dextrose (glucose) which ultimately damages the arteries, allowing cholesterol to get trapped behind the arterial wall. It wouldn’t matter how high serum cholesterol was, if sugar consumption, including complex carbohydrates, such as is found in grains (amylopectin-A).

      Even worse, and something you may be familiar with since it attacks children worse, is the Intralipids used here in the U.S.. The Intralipids used here in the States are made from a processed soy lipids and is well known for damaging the liver, especially in children. In Europe, they use a product called Omegaven, which is made from fish oil and not only does not damage to the liver, but has been documented to help heal the damage done to the liver by the Intralipids, as long as infusions are started before the liver is completely dead. The FDA will not approve Omegaven for use as infusion lipids, with the exception of children who have already sustained damage from the Intralipids (talk about closing the barn door…. huh?)

      The FDA’s insistence on keeping Omegaven from saving lives has nothing to do with the lack of evidence of its health benefits, as opposed to the Intralipid’s health detriments, but more to do with the fact that the Omegaven patent is owned by a European drug company and would most certainly be the end of the marketability of Intralipid, which is owned by an American drug company. In other words, American children are shit-out-of-luck when their puny lives stand between drug company profits.

      Thank you for writing and sharing your son’s story with us.

  42. Kala
    August 3, 2016 | 1:15 am

    Thank you for the post. I have been on fulltime TPN since the 1st of Dec 2015. I don’t understand a lot about it, no one in my area is familar with my condition. I had a blood clot im my aorta an it traveled down cutting off the blood supply to my small intestine. I am just now getting my health and strength back. But was told I would be a candidat for a transplant, but that is also scary from what I have read. It is hard to adjust to carrying a bag around and I miss eating so much . And would love to return to a more normal lifestyle but I honestly don’t know what I should do, any info or advice would be greatly appreciated.

    • Lynn Rodriguez
      August 4, 2016 | 5:27 pm

      My brother had the same thing happen to him .A blood clot killed of circulation to his small intestines .He was on TPN for almost a year.I did research and found out through roar of the wolverine about Jackson Memorial in Miami Florida that does this transplant.Well to make a long story short he got the transplant.Dr Beduski did his transplant wow what an amazing Dr.This Nov will be two years and my brother is doing great.No more TPN no more bags .So if you want more info on who to contact please message me and I would love to help you out.I wish you the very best and may God bless you.Sincerely Lynn Rodriguez

      • Wolverine
        August 13, 2016 | 11:22 am

        Thank you Lynn for this comment. I cannot think of a more encouraging comment that I have ever received. It was always my hope that I could help at least one other person find the truth about intestinal transplants. So many doctors are still very misinformed about this transplant, even gastroenterologists. You would think they would be up to date on such information since it is in their field of study? I guess they’re too busy learning more ways to frighten patients into getting unnecessary colonoscopies.

        I am so happy to hear that your brother is doing fine after 2 years. My wife and I can understand the elation your brother has after getting rid of the stoma/ostomy bag and daily infusions of TPN. No longer being tethered to that IV pole was a huge relief for me. Managing the TPN and ostomy maintenance was nearly a full-time job for my wife. It is a horrible quality of life.

        I hope your brother continues to improve. Thank you again for the comment, it really made my day — week — hell, maybe my year!

      • Eduardo Baez-Muniz
        September 15, 2016 | 9:08 pm

        Ms. Rodriguez, your note detailing your experience with your brother was great. Best wishes in the future. I expect to follow the same route, except I will be traveling from Puerto Rico to FL for the visit. Wish me luck and may all go as happened with your brother.

        Eduardo Baez Muniz

    • Wolverine
      August 13, 2016 | 3:12 pm

      Hi Kala. I am so sorry for taking so long to reply. Please email me from the email address on the “contact” page with any questions that you may have concerning a transplant. I will be able to respond to email right away. I am not always checking the comments every day, but I should. I will try to cover all of the question you may have concerning short bowel syndrome and the possibility of a transplant.

      The aorta is the largest artery in the human body and travels downward from the heart to the legs. The aorta does feed the Superior Mesenteric Artery, which is the artery which feeds blood to all of the intestines. I would guess that the clot entered the SMA (superior mesenteric artery), shutting off blood to the bowels. I am assuming this because if the clot blocked the aorta, you would have lost feeling in the lower body, including the legs. You would have probably lost many more organs as a result, so it was probably caught in the SMA or the ileac artery.

      Many of the other transplant recipients I met at Jackson Memorial Hospital had lost their bowels by clots in the SMA. That is ultimately what cost me my bowels. My colon was perforated by a colonoscopy and I was bleeding internally for three days and the doctors could not figure out why I was in such pain. My body did what it had to in order to stop me from bleeding out and formed a clot in the SMA, which killed all of the bowels.

      You may be a candidate for an intestinal transplant. I am not sure what the qualifications are at this time, but in 2010, when I had my transplant, just losing all of the intestines was not enough to warrant a transplant. There were three specific condition which instantly qualified a short gut patient for an intestinal transplant. You only had to suffer any one of the three conditions. There may be more conditions now, but at that time it was:

      Loss of arterial access

      Cirrhosis of the liver caused by the Intralipids or:

      Back to back line infections from the TPN.

      I’ll try to explain in more detail.

      Unfortunately, TPN is really not an indefinite solution for short gut syndrome, so you will have to face the decision of getting a transplant at some time in the future. It could be years from now, or sooner, depending on how you handle the TPN. Not everyone handles the TPN well and though it is keeping you alive at this time, it is also slowly killing you.

      The very high sugar content of the TPN is caustic to veins and arteries, which is why I will assume that you had a port surgically implanted in your chest to access the catheter to infuse the TPN? This is done because the TPN would destroy any smaller vein within hours or days, so it must be infused directly into the heart. The port you have accesses a catheter which goes into the Vena Cava (one of the largest arteries in the human body) and stops just a few inches short of your heart.

      There were a few times my port became infected. While I was waiting for the surgery to implant a new one, they could only feed me with PPN (which is Partial Parenteral Nutrition) as opposed to the TPN (which is Total Parenteral Nutrition).

      This was only feeding me a portion of what I would need to survive in the long run, yet it still caused several of the veins in my arms to fail and infiltrate, sometimes instantly. It would start burning right away when they started the pump. Sugar is rough on the veins, which is why our body makes insulin to keep blood sugar levels down. Otherwise, just one soda would be enough to kill us.

      This is probably all a bit confusing, but the thing to understand, if none of the doctors have told you yet, is that ultimately the TPN will destroy all six of the only arteries you have to access. This becomes one of the qualifications for a transplant. If the patient’s access arteries have taken too much damage from the TPN, they really must have a transplant or there will be no way to give them nutrition (hydration can still always be given through the arm because the saline is not caustic to veins.

      The other problem with TPN is the lipids that are used (usually given only a couple times a week. your bag will be full of white fluid, like milk. that’s the lipids or fats). If you live in the U.S., then they are using Itralipids, which is supposed to give you the fats that you need to stay healthy. Problem is, the fats used in the U.S. for infusions are from soybean and are known to cause fat to become trapped in the liver cells, ultimately causing cirrhosis, the same way that alcoholics kill their liver.

      This is a condition known as NASH or Non-Alcoholic Steato-hepatitis. No one understands why the soy lipids cause this serious condition, but it is well documented and inevitable if you are on TPN full-time.

      The reason I point out the U.S. is because in most European countries they use a lipid made from fish oil called Omegaven. Omegaven not only does no damage to the liver, but has been proven to help regenerate liver cells from the damage done by the Intralipids. Unfortunately, the FDA will not allow it to be used in the U.S.. Not because of any safety reasons (certainly fish oil is safe) but because of profits and patents.

      The crappy soy shit is owned by a U.S. pharmaceutical company, whereas the Omegaven is obviously owned by European company. It really sucks that our lives (and livers) are far less important than corporate profits to our government, but it is the truth.

      The only way Omegaven could be used here in the U.S. was on children— and only those children whose livers had already been damaged from the Intralipids! Of course, this was over 6 years ago when I had my transplant. I had heard that it is getting easier to get Omegaven because so many people began protesting this disgusting practice by the FDA.

      If you can get them to give you the Omegaven, rather than the Intralipids, it will be worth the effort and save your native liver. Sure, they can transplant livers too, but it adds more risks to the whole thing. If you have a healthy liver, try to keep it.

      I was on the Intralipids for about 6 months and took no damage to my liver, but I met one woman who had also been on Intralipids for the same amount of time and her liver was destroyed. Her skin was bright yellow from jaundice when I first met her at Jackson Memorial Hospital. She also had a liver transplanted with the bowels. In all, she had 7 organs transplanted — stomach, duodenum, liver, pancreas, spleen, small and large bowels. She did very well and recovered rapidly.

      If the patient’s liver has been damaged too badly from the Intralipids, they will be quickly qualified for a bowel transplant.

      The third and final condition is the one which qualified me for the transplant — repeated infections from the TPN. I had back to back line infections. I hope you can avoid these. Make sure that those nurses clean the end of your lead with the chlorhexidine scrubs, not the alcohol wipes! The alcohol is not powerful enough to kill all of the superbugs bred in hospitals.

      My wife used to watch the nurses like a hawk and many times caught nurses trying to access my port without scrubbing the leads at all!! One nurse actually told us she forgot to bring any of the scrubs with her and would have to go all the way back to the nurses station to get them. My wife and I both said, “Then go back and get them!”. I guess that excuse worked on some patients. I am not going to suffer through another sepsis or die to save her lazy ass a trip back to the nurse station.

      My sister used to take a cup to the nurses station when first arriving to visit me and ask them to fill it with those wipes and leave them in my room. This was because so many nurses tried to use that excuse — “I forgot to bring any”, “we’re out of the wipes right now” and all kind of weak excuses.

      We also made sure they scrubbed the lead for a good 15 to 30 seconds. This would piss some of them off, but it is the standard set by the Infectious Disease doctors in all hospitals. The lead must be scrubbed for 15 to 30 seconds with a chlorhexidine scrub, not alcohol. I would rather have a lazy nurse pissed off at me than to go through one of those infections again. I was lucky to survive them. I am not ready to die to save the nurse a trip to get something they should have had on them anyway.

      Yes, many nurse can get complacent and start cutting corners. I understand that they are worked 12 hour shifts and have too many patient to take care of, but still, this is your life. Don’t be afraid to speak up and demand that they clean those leads properly. It only takes one mistake to put you is a very serious way and could cost you your life.

      When a TPN line does become infected, the infection spreads fast. Because it is being infused directly into the heart, it is quickly pumped to every part of the body, which is called a systemic infection or a sepsis. The TPN is very high in nutrients: vitamins, minerals, amino acids (the building blocks for proteins) and most of all SUGAR, in the form of glucose (Dextrose it will say on the bag, same as glucose). Because of the instant energy given by carbohydrate calories, the pathogens can reproduce very rapidly. The TPN is feeding them and then the heart pumps them everywhere.

      If the infection is not caught very early, it can go into something called septic shock, which is very serious. I was in septic shock twice from line infections. My temperature jumped to over 105.5° Fahrenheit (40.5° Celsius) which is a very dangerous fever, causing rigors (when the body violently shakes and you hyperventilate).

      Any infection can cause a high fever, it isn’t considered septic shock until the blood pressure begins to drop to life-threatening number. A low BP is considered shock. What happens during a sepsis is the brain will attempt to push all of the blood to the extremities (arms and legs) in order to move the infection away from the heart and internal organs, but this causes the core pressure in your torso to suddenly drop, including the pressure needed to get blood to the brain.

      Anyway, I am not trying to confuse or scare you, but I have probably done a good job of that. Having a series of infections from the TPN is a real fast way to qualify for the transplant. Ultimately, you will probably have to face one or the other. There are some people who do very well on TPN and I have heard of some who have been on it for 10 or 20 years (although it is a real suck life).

      Many of these people did not lose all of their intestines, only a portion and can get by with TPN infusions just a few times a week. This gives the body time to repair any damage caused by the TPN, so it can go on for many years.

      I had lost all but 8 inches of my small bowels, so I required 16 to 17 straight hours of TPN infusions daily. I was pretty much tethered to an IV pole 24 hours a day, because the other hours I needed to infuse hydration fluids or I dehydrated. For some reason I had a very high ostomy output, so I was constantly dehydrating.

      Do not take dehydration lightly either. It is the single biggest killer of TPN patients. Make sure you have plenty of fluids for hydration. We had to constantly capture my urine and compare the color. When I was dehydrated, it became very dark, sometimes as dark as tea. At that point we would have to bolus a bag of fluids (a bolus is a very fast infusion setting on the pump, but be careful with a bolus.).

      A bolus is typically safe, as long as your kidneys are not injured or impaired. An impaired kidney cannot get rid of excess fluid fast enough and cause congestive heart failure or a pulmonary edema). I never had any congestive heart issues, but twice I had pulmonary edemas and they are scary as hell. This is when your lungs fill with fluid and you can’t breathe — scar, scary shit! You are drowning on dry land.

      I’m really not trying to scare you, I am just trying to list the conditions which will qualify a short bowel patient to receive a transplant and some of the serious conditions I encountered while on TPN. I have had far less life-threatening conditions in the 6 years since the transplant and have spent far less time in hospitals. Hospitals are very dangerous places to be because some of the worst pathogens are accidentally bred in hospitals and become resistant to most antibiotics from their constant exposure.

      The idea of a transplant is rather frightening, but in my case, I was more afraid not to have it because of the constant line infections. The 2 line infections I had before the transplant nearly killed me and I doubted that I would survive another, so I didn’t have much to lose at that point. If you tolerate the TPN well and avoid infections, you may not have to consider a transplant for many years.

      If you can manage to get the Omegaven instead of the soybean crap (Intralipids), you will not have to be concerned about your liver either, buying you more time.

      The doctors told my wife and I that some people are more prone to line infections than others, the reasons are not clear. Those who get infections easy, like me, tend to keep getting them and those infections kill many patients.

      If they can qualify you for a transplant without any of those conditions, you may want to consider it. My quality of life improved incredibly after the transplant. No more stoma or osmotic bag. No more TPN infusions or having to carry an 8 pound bag of TPN and a pump in a backpack and worry whether some asshole in a store may bump into you and snag the line going from the backpack to your port.

      I used to worry about that a lot when going out. So many people walking by quickly and bumping into me or brushing against me. You never want that port line ripped out because it is inside one of the largest arteries in your body. The blood loss would be massive and very hard to stop without surgery. Keep that line far from people. Be careful of people walking near or around your IV pole. My mother once tripped over mine and knocked it over. Luckily, I had very large male nurse at the time (in ICU) who was able to catch it before it hit the floor or pulled my line out of the port. I shutter to think about what would have hoaxed had he not caught that huge bag of TPN pulling on that line?

      My life has been pretty normal since th transplant. The first 6 months were really high because I had some rare complications. The first years was slow because i had been really weakened from losing the bowels and 6 months on TPN and the sepsis and all. After the first year, my life returned to nearly what it was before all of this happened.

      The main difference, besides the medications, is that I carry hand sanitizer with me every where and use it on any surfaces before touching. If I pick up a product off the shelf, I do not touch my face, eyes or nose with that hand until I sanitize it.

      I must be doing something right, because in the last 6 1/2 years since the transplant, I have only had one cold virus and I got over it in the normal amount of time it took everyone else to. In fact, I got over it faster than my wife did? It’s not quite as scary as people think.

      The medication, Prograf (Tacrolimus) does not wipe out your entire immune system, like some people believe; it only targets certain cells of the immune system called T-cells. Your white blood cells and neutrophils are left alone and at the same levels as any normal person.

      I have probably written more information than you wanted or expected. If you have any other questions, please write me via email and I will answer any question you may have about intestinal transplants. Thank you for writing and sharing your story with my readers. I hope all goes well for you in the future.

  43. Eduardo Baez-Muniz
    September 15, 2016 | 9:05 pm

    The article was very informative and motivating. I have a relative here in Puerto Rico that is faced with a life on TPN or having surgery. I found the contact info great and have already contacted Jackson Memorial for an appointment and logistics info. Thanks for the piece, great work.

  44. Carissa
    October 1, 2016 | 3:30 am

    I had this saved from last year. I am a TEN year survivor if a multi-visceral transplant performed by Dr. Kareem at UPMC in 2006. I was so sick, 62 lbs, and he did not think I would make it out of the OR. Less than 5-10% chance. Ten years later I’m doing fairly well. Only rejected once. I have some other issues, primarily non- transplant specific related, but I’m alive, something we only dreamed of 12 years ago and would have been pleased with even five extra years. Drs. Costa and Kareem have told me I will live for decades…and I was done when the 5 organs were still somewhat new. They hadn’t even been doing them a decade yet. Survival rate at the time was good at 3 years…about 50%. I’ve kind of beaten the odds by living 10 after the full multi-visceral. I started working part-time a year ago, and run a non-profit, do a lot of volunteer work, and just kind of enjoy life…not w/o setbacks, but I’m so much better than 10 years ago!

    I knew Maureen, the one you mentioned who lived over 20 years after sb/liver very well. There is a man now who had a sb/liver in 1993 in Pittsburgh and he is still doing ok too!

  45. Laura Cantrell
    January 6, 2017 | 11:44 pm

    I could have written much of this. Thank you! I lost my intestines and colon in Aug 2015. After 13 surgeries within one month, the surgeon closed me up and I was put in a Long-term care facility, on TPN & was expected to die. Fortunately, my family found Cleveland Clinic. I am now a patient of Dr Kareem Abu El-Magd and am awaiting transplant. The have listed me for multi-visceral but may put the liver/pancreas on hold in favor of isolated bowel. I trust the team of surgeons to make this call. I am strong and ready to do my part. Oh, and I was a life-long distance runner, 5x Boston marathoner, was working out until a bowel blockage took me to my knees. And, I’m almost 70 years old…with a whole lot of fight left on me.

    • Wolverine
      January 7, 2017 | 8:46 am

      Hi Laura. Thank you for writing and sharing your amazing story. You certainly have a lot of fight in you. I’m not sure I could have survived all that I did had I been in my 70s? You probably couldn’t have survived such a trauma had you not been in such good athletic shape. Thankfully, I was in good physical condition. More than one surgeon told me I wouldn’t have survived those surgeries had I been an obese individual. The patients who were diabetic had very high mortality rates

      You have one of the best transplant surgeons you could possibly have. Dr. Kareem is a legend in the multi-visceral and bowel transplant world. It is a shame how many doctors, including gastroenterologists, are not aware of the success of bowel transplants and keep short bowel patients on prolonged TPN. TPN is great for keeping a patient alive until a transplant can be arranged, but it is not a long term solution.

      I hope you will keep me appraised of your journey. It’s hard to believe that it has been nearly 7 years since my transplant. I wouldn’t have made it this long without the transplant. Me and TPN didn’t get along very well. I had back to back line infections which I was lucky to survive. I was very afraid I would not survive a third. I have done very well with the transplant. I have never had any problems with rejection issues. I hope that your transplant goes as well. I am very happy your family was able to find the program in Cleveland.

      I was also listed as multi visceral, but only received the isolated bowel. I think they just cover their bases to have the other organs available from the donor because they never know what they might find once inside. I didn’t know that they hadn’t taken my liver,pancreas and spleen until after I awoke from the transplant surgery. My wife and family said I was in surgery for about 12 hours, but it seemed like a blink to me. I remember looking up at the surgical lights, seemingly blinked and was suddenly looking up at fluorescent lights in the SICU.

      Thank you again for writing. I wish you all the best in your upcoming transplant. I will never regret it. It gave me my life back. Life on TPN was crazy. My life since the transplant isn’t much different than it was before losing my intestines.

  46. Jan Harris
    January 15, 2017 | 1:38 pm

    Hello,
    I’ve not had an intestinal transplant. There are many adults that have Intestinal Malrotation, which is a congenital birth defect. It’s usually caught in early infancy so most drs don’t even look for malrotations when adults present with digestive issues. The IBS diagnosis is usually given. Dr Kareem Abu Elmgad is changing that! He performs surgery that he equates to a transparent, only using our own organs. He actually brings all intestines out of your cavity and looks over them. He repairs any problems. He looks over other organs making sure there’s no lurking problems. He and his team then returns your intestines and places them where they are suppose to be, stitching them in place. Patient is now ” anatomically correct.
    Finding Dr Kareem at Cleveland Clinic has helped many people already. I live in a rural area. My GI and surgeon told me there was nothing they could do for my malrotation. They also said it was not causing any of my symptoms. Thankfully Dr.Kareem says otherwise!

    • Wolverine
      February 10, 2017 | 10:18 am

      Yes, Dr. Kareem is a real pioneer in intestinal transplants and short bowl syndrome. I am happy to hear that he can help you with the Malrotation. He is the best in the world when it comes to issues of the bowel, so you couldn’t be in better hands. Thank you for sharing your story here. I wish you all the nest in the treatments ahead.

  47. Terry Siler
    January 18, 2017 | 10:27 am

    Hi there I read your story and sorry that you had to go through so much. My daughter just passed due to short gut syndrome. Most of her small intestine was removed at birth leaving her with only centimeters of small intestine left. The doctors pushed my and my wife to just let go but how can someone just give up on their child. We reached out to several doctors and specialist even the hospital here in our city told us nobody in the state of Florida does this type of surgery. I started my research and found that right here in Miami at Jackson they do it with a 92 percent survival rate we got excited knowing we now had help. This help came with a cost although our daughter was living depending on tpn there is a major down side to it the tpn destroys the liver at such a rapid rate that doctors and researchers should find a better way but of course as you stated because it hasn’t happened to any mainstream celebrity it doesn’t matter. While we went to countless appointments and did everything that was instructed, after almost a year the board had a meeting and decided they wouldn’t give my daughter a transplant as any parent would be crushed and pissed after all these months of fighting trying everything you could you almost feel like you failed your child. Reason being was that her liver had failed too poorly but thinking to myself how could this happen how didn’t the GI doctors catch this?!? As you stated I started to play it back its all about the money my daughter was going on because of the tpn, lipids, and other meds all of which they benefit off of something needs to be done I reached out to the media of course the story didn’t get aired. It almost seemed like we were forced her last couple of months here with us to let go it seemed like everyday doctors would mention “comfort care” my answer each time would be hell no it’s like they knew something wasn’t right or went wrong but of course they wouldn’t tell us. Please if you read this be vigilant all help isn’t good help, some of the help that you may receive is meant only for self purpose. Greed is tearing our country up and has lead to the death of my daughter. I want to end this off with the nursing staff at Jackson Memorial Pediatrics (Holtz) and Joe DiMaggio Childrens Hospital & Ambulatory Unit are amazing and I will forever be thankful for the kindness that the staff gave us. Sleep in peace baby girl 6/9/15 -12/24/16

    • Wolverine
      February 10, 2017 | 12:58 pm

      There is no doubt that your daughter suffered because of money and a unique type of payolla which goes on at the FDA and other federal bureaus. They have been using a different infusible lipids in Europe called Omegaven for years. Omegaven is made from fish oil and does no damage to the liver whatsoever. The FDA will not approve it for use in the U.S. except for in the case of children, and only children, who have already sustained major damage to their livers from the Intralipids used here in the U.S. The Omegaven works so well, that in cases where it has been used, much of the liver damage done by the Intralipids has been reversed.

      I do not know why the FDA will not approve it for general use, it is certainly not because of safety, since nothing can be more toxic than the soy-based Intralipids they now use. The only reason I can seem to come up with in my research is because the Omegaven patent is held by a European pharmaceutical company, whereas the Intralipids patent is held by a U.S. corporation. Since Omegaven does no liver damage and Intralipids can destroy an adult’s liver inside of 6 months and children much faster, no one would use Intralipids anymore if Omegaven was available.

      This means that all sales of Intrlipids would cease the moment they allow Omegaven to be an option, no matter how much it costs. I’m sure that someone at the FDA is getting lot of money to continue to delay the approval of Omegaven, at least until the patents run out. I really can’t think of any other reason. I have learned lot about the revolving door between corporations and the FDA in my research about nutrition and diet. Every person who has been appointed to the head of the FDA for the last fifty years has been an ex-executive for some pharmaceutical, biotech, or major food corporation and many of them go right back to a high paying executive position at the corporation after their stint at the FDA is complete. Your daughter was just another pin in a board to those people. They are complete sociopaths with no empathy or ability to think of those numbers as human being with loved ones. It’s all about profits and appeasing stock-holders to these people.

      I know that none of this helps you at your present situation, in fact, it probably makes it worse. I was constantly surfing the web while in my hospital bed and learning as much as I could about the things the doctors were telling us about. I remember learning about the liver damage that the Intrlipids would do and that there was Omegaven. My wife and I tried everything we could to see if I could get the Omegaven to preserve my liver before the transplant. I didn’t want to have a multiviceral transplant, adding a liver to the mix. Most of the doctors had never even heard of the Omegaven, or lied about having no knowledge, but the compound pharmacist, who was mixing my TPN knew about it and told us that he had used it over at the Arnold Palmer Children’s Hospital and had seen nearly miraculous things as a result, but said that no adult could get the Omegaven, even if their liver was dying. He said that he could lose his license for even mixing it up for me. I was extremely lucky that the Intralipids did not do any permanent damage to my liver in the 6 months I lived on the TPN.

      I never put full faith into the doctors. If I did, I would have been dead a long time ago. I have refused many drugs and treatments throughout all I have been through and there are some things that I wish to this day I had refused because of the damage done. Twice I was treated for organ rejection based on the visual diagnosis from the ileoscope, rather than waiting for the biopsy results. On both occasions, the doctors said that waiting the 48 hours it would take for the biopsy to return, could be far too late to stop the damage from rejection. Both times, the biopsies came back negative for rejection and the treatment used was a powerful immunosuppression drug called Campath which killed more than 10% of my bone marrow. The cancer I now have, Multiple Myeloma, is a cancer of the bone marrow and I have little doubt it was caused by the use of this drug, a drug notorious for its cancer risks, something else the doctors did not tell us. In fact, I only found out about the known cancer risks of Campath about 2 years ago.

      I didn’t learn until much later that a biopsy must not always take 48 hours. Other patients had gotten results back within 2 to 4 hours, if the doctors placed an emergency tag on the specimen. Had I known that then, I would have refused the treatments. I would have told the doctors that they must not really think that I am in organ rejection if they did not place a rush on the biopsy. They led me to believe that everyone must wait 48 hours for results. This still haunts me to this day and will continue to haunt me until this cancer has killed me. I can’t for the life of me think of any reason that the doctors did not place a rush on those biopsies if they truly thought I was in organ rejection. I know how these things can get inside of you and eat you up. I have never had any signs of even light organ rejection and have done fine with the transplant. There is no reason not to believe that I could have lived out my natural life with the transplant. It is the Multiple Myeloma, which is incurable, that will cut my life short, not the transplant.

      I think that this cancer could have been prevented had I refused those two treatments with the Campath, but I did not have all the information when I had to make the decision. I am sure this is how you feel at this point, but you cannot go back and change those things, but that doesn’t mean they will not continue to haunt your every thought. I’m sure that you did everything you could based on the information that you had at the time. I can tell that you really love your daughter and would have done anything to ease her suffering and give her a shot at a life.

      It grieves me to no end that every day there are children taking unnecessary damage to their livers so that some greedy CEO can continue to profit from a drug that should have went away a long time ago. Then the fact that our own government doesn’t protect those children, but instead appoint bureaucrats to the FDA who are still on the payroll of the very companies they are appointed to police — it is all so frustrating and yet as always, the media is nowhere to be found on this issue.

      The media is not interested in giving any attention to any of this stuff, unless some celebrity become afflicted by it or one of their children. I wish I knew what to do about getting more attention on these subjects, but without media help, the internet is the only tool we have available. That doesn’t help much, because without promotion, no one will get many views on the vast internet, where stuff like this just disappears into a black hole. The media also doesn’t like anything which puts doctors in a bad light. Doctors are treated like some sort of gods by the media.

      I was really saddened by your comment, as I always am whenever I receive letters or comments of this nature. Unlike the people in the media, corporate fat-cats, or doctors, I have a heart which gets a small piece cut out of it every time I hear of someone who needlessly suffered because the doctors did not provide all of the information. It’s bad enough when doctors fail in this regard out of ignorance (because doctors should not be ignorant on these matters), but when doctors purposefully withhold such vital information, it is far, far worse. I am really sorry for what you have been through and hope that you can find a way to move forward, even in light of the things you may know now. We can only judge ourselves based on what we knew at the time we were faced with these decisions.

      All of the nurses at Jackson Memorial Hospital are awesome. The pediatric ward for transplants was on a different floor than the adults (adults are on the 15th floor — the very top of the hospital), so I didn’t have any encounters with those nurses, but all of the nurses who cared for me were great. They work unbelievably long hours, but always seem to go that extra mile for the patients. I thank you for sharing your daughters story here. I hope that you can learn to cope with your situation in time.

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