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Small bowel Transplant

Fri, May 16, 2008 12:00 AM

I am being told that my future hope in my continued struggle with severe Crohn's Disease may be a small bowel transplant. I am hesitant because it is so new and relatively untested; however, I have pretty much maximized all convential medical procedures. Are there any of you out that may have gone through this, know someone that has gone through this, or may be facing this? I would greatly appreciate any help you can lend in helping make the best decision for my personal struggle.

thank you,

andrew
Joined May 16, 2008

Fri, June 20, 2008 11:02 AM

Reply posted for Kate.

Hi Kate,

My case is very similar to your husbands. I have had Crohn's for about 40 years. I have had most of my small bowel removed, been on every drug you can name, had my gall bladder removed, had kidney stones and am on TPN. and as a result of the TPN have had a multitude of port infections.

My over all problem is that as soon as I stop TPN within a few months I begin to lose weight due to mal-absorption.

I am not afraid of the concept of a bowel transplant. In fact in the past 5 years the bowel transplant community has made great improvements in the longevity of it's patients.

Why live a life in constant pain if there is a chance of even getting just a few years of peace and good health.

I am all for it. I have three children and would love to have a more normal life with them.

God Bless

David

signal10
Joined Aug 27, 2008

Thu, May 22, 2008 12:00 AM

Reply posted for Andrew.

Hi Andrew,

I am sorry that you are going through so much right now. My husband is going through a similiar situation. There are talks about a small bowel transplant for him also. We are meeting with 2 top GI doc's in Boston in a couple of weeks. He has had 2 colectomies, lost most of his colon, a major hernia repair and most recently, removal of massive adhesions on his small intestine. That surgery was in March and he has not eaten since. He has a PICC line in a recieves Total Parental Nutrition through it every night while he is sleeping. He is in constant pain and every time he tries to eat he literally folds over. The doc thinks it is Adhesion disease that is reforming on the small intestine, but frankly, I'm not sure that are sure anymore. He has had complications with his gallbladder lately. It has sludge in it. They have run multilpe tests and can't find "active" Crohn's. He is 35 and has been diagnosed with Crohn's since the age of 18. He has been on every drug under the sun, including Remicade, which did nothing for him. He has been taking 6MP for years now. He feels terrible 24/7 and as I said, is in pain all the time. He wonders when and if he will ever eat again. They may be putting a perm. line in his chest soon for the feeding. Please keep in touch and if you are willing, please share more of your story. He feels so alone. Maybe you both could be of some help to each other.

Kate

kate
Joined Apr 24, 2008

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