Have you had an imaging-type scan? This can show if the jpouch is enlarged (part or all), or if it is flopping over.

I'm not entirely sure if the definition of floppy pouch syndrome includes megapouch (which is what I have). My symptoms weren't exactly the same as yours, although I did have the same bloating.

When things first went wrong, my pouch looked normal on colonoscopy (i.e. from the inside). It wasn't until I had a CAT scan to see what it looked like from the outside that I got diagnosed.

I had a look for mentions of "floppy pouch syndrome" to find out the definition, but could only find it referred to in one paper with no explanation.

I did find mention of "floppy pouch complex", which was defined as:

"Floppy pouch complex is defined as the presence of pouch prolapse, afferent limb syndrome, enterocele, redundant loop and folding pouch on pouchoscopy, gastrografin pouchogram or defecography. Common clinical presentation includes dyschezia, bloating, abdominal pain, straining or the sense of incomplete evacuation."

https://academic.oup.com/gastr...icle/6/4/246/5048415

If this is what your doctor was referring to, then that's not megapouch. A bit confusing, because, in megapouch, the whole pouch goes floppy, but obviously floppy pouch syndrome is describing something different. Sorry!

On the plus side, I believe some cases of floppy pouch syndrome can be treated with revision or repair surgery. (Megapouch can't – the pouch has to be removed and a new one created from a fresh section of bowel, or you have to go to perm ileostomy.)

Do you think you might need a pouch redo???

I’m have this now. I’ve had 4 conservative surgeries and next week I’m having a resection. They found a long loop that needs to be shortened and scar tissue.
what have you done for your issue?

thanks, I know this post is old but if you see it please respond. I’m extremely nervous.

Hi all - I'm new to this group and I'm sorry to see that there are so many unsatisfactory outcomes here.

I had a j-pouch procedure for UC done in 1986 and have had pretty much every complication over time - pouchitis, obstructions, fistula. About a month ago, after being unable to pass much of anything, I was diagnosed with a "floppy pouch". Dr Shen at Columbia Presbyterian in NYC did a scope and inserted some bands but there's really been no improvement in my situation. Like many of you, I'm miserable - just cramped and fatigued all the time, unable to eat or sleep much. I'm supposed to begin biofeedback, but I'm pretty skeptical about it.

Have any of you that have dealt with this problem had a successful outcome? If so, what worked? Meds, surgery, exercise, biofeedback, just the passage of time? I'm hoping for some encouragement!

Thanks!

J-pouch 86 in NY