Hello everyone,

I haven't been on a lot on the board and the chat. I took the time to see doctors at Cleveland Clinic and Beth Israel in Boston.

I saw Dr. Alan Moss (GI) and Dr. Deborah Nagle (Colorectal Surgeon) at Beth Israel
and Dr. Bo Shen (GI) and Dr. Victor Fazio at the Cleveland Clinic

all of them agreed that I should try Humira or Remicade. and if I didn't see any improvement within months, to do a pouch resection.

The problem they found was characterized as a fistulizing Crohn's of the pouch. The cuff is very inflamed, and the J-pouch is very inflamed too. What they also found was that at the middle of the J-pouch, there is an adhesion that's narrowing the J-pouch in half. It looks more like the number 8 is shape. The narrowing is is 7cm long.

Currently, I have a temporary ileostomy. What would you do if you were me?
I know a lot of people trust Dr. Fazio and Dr. Bo Shen.

I'm just afraid that the new J-Pouch will get diseased and the cycle of pain and more surgery will continue.

Boston170

Based on what you have described and my personal situation with stage one of the surgery, I would go for a permanent ileostomy. I have already personally decided that if the pouch is as much pain and trouble as what I was experiencing with the Colitis, I wasn't going to fool around for two years with drugs and especially prednisone to try to get it and keep it under control. Easy to say now, but your experience actually helps me confirm my plan. Good luck to you.

Based on what you said, you should probably try Humira and/or Remicade first and see if they help you. All of the doctors agree that is the way to go, and it would be tough to get them to go along with a pouch removal without at least trying to save it.

However, if I were you and I found I needed a pouch redo because of the narrowing, I might opt for the ostomy at that point instead. But these decisions are always no one's but our own - so consider the costs and then go for it, whatever you decide.

I don't want to have a permanent ileostomy. I'm trying all I can to prevent this option. I hope the pouch resection works.