Due to surgies, I have about 1.37m of small bowel, short bowel syndrome, and am on TPN IV therapy. Via the internet and other, I have found positves for getting transplant, but have not found much negatives. What are the positives and the "negatives". Scared to make this decision, Richard
Intestinal transplantation is still an unusual procedure. The advantage of a successful transplant would be your ability to maintain yourself by oral nutrition and no longer need TPN. The negatives are infection, rejection of the transplant and death.
I suggest that you contact a transplant group doing intestinal transplants. It is only by undergoing an appropriate evaluation can you decide if the benefits outweight the risks for you.
May I inquire how many surgeries you have had and what your diagnosis was?
My 16 yr old son just had a small bowel series done yesterday and the diagnosis while not yet complete seems to be Crohn's disease. The doctors are talking about a new drug for Crohn's patients called Remicaid (or infliximab) which is supposed to eliminate the inflammation entirely with just one dose. It is very powerful and while there are side effects my son is now on prednisone & flagile (IV) and he is not responding. He was initially diagnosed with ulcerative colitis 5 years ago... Crohn's colitis just recently but now he is being re-evaluated by another specialist at my request because he is still in chronic pain.
I would appreciate more info on your situation and how you lost so much of your small bowel. I remember talking to a friend whose sister had the small intestine removed and they performed a "hook up" with the large intestine or something like that... I will call this person and get more info for you.
Hi Susan, I had total collectomy (total removal of colon & rectal) due to ulcerative colitus and toxic mega colon back in 1970. I had perfect funcioning ileostomy until last year when I had failed attempt to convert from external ileostomy to internal continent ileostomy. Fistuala(s) in seam of portion of small bowel used to make continent pouch would not heal so reverted to external ileostomy again. Only, stoma was placed in bad place for adhesion of wafers and had it moved for better placement. Only, in ensuing surgery a lot of adhesion of scar tissue of small bowel was found and required removal a lot of small bowel and left me with short bowel syndrome. I am currently trying to get in a study program at "Nutritional Restart Centers" in Boston. They use growth hormones, glutimine, and modified diet to both, grow new small bowel cells and enhance absorption of nutrients and fluids, thus by, possibly getting off TPN IV nutrient therapy. This is an alternative to more drastic transplant solution, (I hope). Presently, without TPN, I simply die. Good luck with your son. I will say a prayer for him. Albeit, have a good day.
Dear Richard, my daughter is 18 months old and received a liver and small intestinal transplant in March of this year. Due to TPN it destroyed her liver and resulted in her needing both organs. She had most of her intestine removed over the 10 month period. At 10 months old she received her transplant. She has had one rejection, but is doing very well. Because she is so small she is just learnibg to eat food by mouth. There has been alot more succesful intestinal transplants over tha last couple of years. Please let me know if you need any more information I would be more than happy to help any way I can.
WOW! I have learned not to compare in my old age. But, sometimes another's situation like your baby's just leaves me feeling a little more grateful. I am glad to hear she is doing okay with her transplant. See my response to Susan G. for info how I got to considering transplant. I understand from reliable sources that it is the amount of calories in TPN, that causes liver damage. As of now I have minimum calories in my TPN. Is there something else I don't know about TPN, that causes liver damage that you know of. Liver damage and to mention the inconvenience of being tethered to TPN, 12hrs, four to five nights a week, is a concern to me and the reason for considering transplant. If the center that I mentioned to Susan G. doesn't get me off TPN, then will most likely go for the transplant. I do have concern about loosing the 4ft of small bowel I do have to transplant surgery. If rejection is constant, then I won't even have 4ft of small bowel.
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