Funny, I've had my j-pouch for 5 years and just recently found out the pouch has never worked for me. Since I didn't know what one should feel like after j-pouch surgery I just assumed aches, joint pain, fistulas and going to the bathroom fairly urgently 15-20 times a day was normal. Now I find out i've had chronic pouchitis all these years so what i've been going through isn't normal at all for someone with a j-pouch. Anyway, doc put me on Entrocort (sp?) and 6-MP. He said there's a good chance i'll be on 6-mp indefinitely. Pouch is totally lined with ulcers. All my docs think I should take the next 3-6 months off, get on strong meds and try to get healthy again. Scary to think of not working and having no income but i'm going to try to apply for ss disability. I told doc we want a baby and i'm scared to be on 6-mp. He said women do get pregnant on it and stay on it and babies are fine. I wonder? So plan is to start steroids tomorrow along with 6-mp for the next 3-6 months. If I respond, great, i'll see what it's finally like to have a working pouch. If not, humira or ostomy bag is next.

Have you tried antibiotics yet (cipro or flagyl)? That is usually the first treatment option before 6-mp or steriods.

I agree, antibiotics will fix you up in days! Forget about the long term UC treatment.

Hi,
I have had my pouch for going on about 4 years now. I have always had problems. I like you thought thats the way it was suppose to be. I am now on 1000 mgs of Cipro and I am doing fairly well. My doctor says we will try as long as the antiobiotics work then if not, the bag. I to have terrible leg pain and joint pain. I refuse to take steroids ever again though. I will go back through surgery before that. Awful side effects. Good luck.
Marie