Has anyone had a colon transplant? Need advice!

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3179
River Birch
Jun 29, 2019 4:12 pm

I'm not sure where to post this question on the website. Has anyone undergone an actual colon transplant (I don't mean a reversal)? I recently came across information that there were 109 intestine transplants in 2017, from 113 available donors in 2017, and 251 patients currently on the waiting list with the cost exceeding a million dollars. When I inquired about this in 2016 after my ileostomy, I was told by a doctor (?) or someone that this type of transplant surgery didn't exist, but I think I was offered that misinformation because my health insurance certainly won't pay for it.

Pirrip
Jun 29, 2019 4:36 pm

I asked for a brain transplant but they couldn't find another chimp.... Good luck mate, you don't suffer alone......

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w30bob
Jun 30, 2019 1:24 pm

Hi River,

Be very careful about transplanting small or large bowel. It is done, as you found out, but the long-term outcomes aren't great. I looked into small bowel transplant (not large intestine as you are asking about), but the issues are the same. Rejection by your body is the biggest issue followed by unexplained necrosis of the bowel... meaning it just dies for no apparent reason. Once they yank your bowel, you have very few options if things go bad. So just take your time and do the research and don't look at it from the perspective of how good things could be if it works... look at it from the point of view of what will it be like if things go wrong. The medical profession is obviously making advances in rejection drugs and better understanding the compatibility between organs and recipients. Talk to all the top transplant hospitals (consultations are always free) and ask why each hospital thinks it's better than the rest. You're talking about going down a very slippery slope. There's a reason why organ transplants are always a last resort... make sure you understand all the details about the road ahead if you're serious about this.

Regards,

Bob

River Birch
Jun 30, 2019 3:32 pm

Bob, thank you for your response. I'm willing to take the risk since it was an infection from C. difficile (acquired from a prior hospitalization) that resulted in the emergency ileostomy. If the transplanted colon were rejected, I suppose they would do another emergency ileostomy if I didn't die first. The next time I see my PCP, I'll ask about getting a referral for a consultation.

Past Member
Jul 01, 2019 1:17 am

My colorectal surgeon told me several years ago that he didn't recommend it. He said it generally does not turn out well.

 
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River Birch
Jul 01, 2019 8:06 pm

Dear Westie, thanks for your information. Based on what I read online, the only hospital in my state doesn't perform 'elective' organ transplants but I would have to contact them for a definite response. In case you or other readers are interested, the statistics that I have for five-year graft survival by transplant type are:

Organ type 5-year graft survival

Heart/Lung 35-60

Heart 74-83

Intestine 30-67

Kidney 77-82

Kidney/Pancreas 68-85

Liver 70-76

Lung 44-57

Pancreas 50-75

A_Stoma_By_Any_Other_Name
Jul 02, 2019 12:03 pm

Generally speaking, when it comes to a GI transplant, it's considered a last resort. The survival outcomes vary by clinic and physician. Because the GI tract is openly exposed to the outside world and pathogens, it is also, therefore, home to much of the body's immune system. Transplants require lifelong doses of powerful immunosuppressants, and due to the concentration of immune cells in the GI tract, controlling the immune response is one of the trickiest parts of such a transplant. There's a significant risk of rejection. Any exposure to any illness is very dangerous after a transplant - this includes things like the common cold or the flu. They usually only recommend transplant if there is multi-organ involvement; the replacement of multiple GI organs is called a multivisceral transplant. They reserve those for cases in which people are entirely unable to get nutrition through the GI tract - so for people who cannot eat by mouth or tolerate formula feedings through a gastrostomy or jejunostomy - and have been on IV nutrition long enough that they have liver failure and/or multiple cases of sepsis in one year (there's an entire list of criteria).

Long story short: GI transplants are dangerous and only done if there is no other way for someone to get nutrition. There's no guarantee they will work and the science is still being refined.

River Birch
Jul 02, 2019 12:53 pm

Dear ASBAON, thank you for your information. There goes my idea of donating a kidney for a colon.

A_Stoma_By_Any_Other_Name
Jul 02, 2019 1:33 pm

Haha, no problem - it's a great idea in theory. The next step really is stem cell transplants - Children's Hospital of UCLA is currently working on creating small bowels via stem cells, so maybe one day that will be an option for colons as well.

Mrs.A
Jul 07, 2019 2:04 am

Interesting, I never heard of a colon transplant before now.

clover12
Jul 16, 2019 7:23 pm


From what I've been told, it's only if your small intestines are really bad? I don't know, I wasn't even told about the Joiuch and I'm dying because I have RA and can't change my flange. I have lost 37 more lbs because I can't eat.  

A_Stoma_By_Any_Other_Name
Jul 16, 2019 8:35 pm


Yeah, exactly. It's usually reserved for patients who have become TPN dependent (Total Parenteral Nutrition) and who have had at least two episodes of sepsis in one year and/or liver failure in relation to the TPN. There are other options for feeding that are available, such as formula through a nasogastric tube, a gastrostomy tube or a jejunostomy tube; the TPN is IV and bad for the liver so it's a last resort. A really good nutritionist can show you calorically dense foods that make it easier to eat small, frequent amounts.