UOAA Discussion Board

Hello there-
A bit of back story-- I was diagnosed w/ Crohn's 20 years ago. In 1996, I had an ileostomy leaving a small amount of colon and all below to be reconnected at some point. 4 years later, the ileo was taken down. I did rather well for about 5 years (used Remicade) but, the med stopped working, I got very ill....and ended back up with an ileo in 2008.
This ileo hasn't worked out so well for me. I am dehydrated to the point of needing IV fluids almost monthly. I am extremely self conscience. Etc, etc.
I've been traveling up to Shand's Hospital in Gainesville, FL (a university hospital) and the Associate Professor of Medicine (my GI) seems to think I may be a candidate for a JPouch. I had some scope tests done--my small bowel looks pretty good (my Crohn's has always seemed to be in the colon rather than small bowel) I have a few more tests to do and then a consult with a surgeon up at Shand's. The GI says she has "All kinds of Crohn's patients running around with JPouches".
When she did my rectal scope and looked at the remaining "bridge to nowhere" I have, the report calls that area a JPouch. I never had this knowledge that I already have a JPouch. Does this sounds right?
So, my understanding is, if I can do this, they would take down my ileo and connect it to the existing "JPouch"?
I have started some meds to help decrease my output and they seem to be working out (bile salt absorber and Tincture of Opium) So, I feel good that my output would be managable if I'm reconnected.
I want to ask all the right questions when I consult with the surgeon. Any suggestions from this group would be greatly appreciated.
Thank all you MAH-velous human beings for sharing yourselves and taking the time to help others--
My Best to you all!

Everything I have ever read has said that CD patients are not candidates for J-pouch because the disease can reoccur in the pouch and that it is common for CD to reoccur at the site of surgery. I am not totally current on things, but I don't know that that has changed.

I can tell you, from my perspective as a failed j-poucher that having chronic pouchitis, anal abscesses and fistulas made every one of my doctors look hard for CD, even though I had been diagnosed with UC. And I can tell you that a diseased j-pouch makes life pretty miserable.

It is important to note that having a j-pouch will not change your output amount. If you have high output with an ileo, you will most likely have high output with a j-pouch. I have to say that I actually have less output with my ileo because I don't have the chronic pouchitis, but that may just be me.

I would do some research on j-pouches and CD and also ask the surgeon about recurrence statistics for people in your situation. Be sure and ask about long term success of the pouch, because in studies over shorter terms the success rate is higher.

The abstracts below generally say quality of life is good (although they don't exactly say how that is measured), but that something like 30-50% of CD patients will have had their j-pouches removed after 10 years. I used the terms IPAA (for Ileal pouch anal anastomosis) and crohn's disease as my search terms. There are a lot of hits, but some of them are the same article on multiple sites. Good luck with your decision!

http://www.ncbi.nlm.nih.gov/pubmed/18936574

http://www.ncbi.nlm.nih.gov/pubmed/15937625

http://f1000.com/1158866

http://www.ncbi.nlm.nih.gov/pubmed/8756845