You could be having a prolapse too. It sounds like a visit, 2nd opinion, to the Cleveland Clinic, Mayo Clinic or other j-pouch experts might be needed now. 

I had it and had a pouch revision in one step back in 2010. Pretty easy, probably because the enlarged part was the top,  which connected to small intestine rather than cuff. Did the doctor say what caused it? Mine said it was rare and they don't know why it happens. Good luck to you!

TE Marie posted:

You could be having a prolapse too. It sounds like a visit, 2nd opinion, to the Cleveland Clinic, Mayo Clinic or other j-pouch experts might be needed now. 

Thanks, TE Marie. I will read up on prolapses. Should have mentioned that I am in Australia, so unfortunately can't take advantage of second opinions.

The problem was revealed by a CAT scan, and I'm happy with the diagnosis. Was just wondering whether anyone else had the same thing. It's sometimes called "floppy pouch" too, although that can mean a pouch that isn't emptying well for whatever reason (not necessarily due to the bowel-wall muscles giving out).

tulsamom posted:

I had it and had a pouch revision in one step back in 2010. Pretty easy, probably because the enlarged part was the top,  which connected to small intestine rather than cuff. Did the doctor say what caused it? Mine said it was rare and they don't know why it happens. Good luck to you!

That's very interesting to hear, tulsamom. Unfortunately my whole pouch has enlarged, which is one of the reasons I can't have revision surgery. My surgeon also said they don't know why it happens. He was involved in taking biopsies from enlarged pouches to see if there were any detectable changes or causes, but the muscle tissue appeared normal when it was analysed.

I'm glad to hear your pouch could be fixed :-)

My j-pouch was enlarged too, which probably factored into it's failure. (The main problem was my cuff.)