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Hey guys

New to the platform. Hope you’re  all doing well. I had a j pouch put in about 15 years ago. Over the last 3-5 years I have been experiencing cramping, diahorea and the feeling of incomplete motions. Every 4 months or so I get a big flare up which is very uncomfortable. It gets to the point where I feel totally bloated, like I have a full stomach that needs to be emptied but only about a coins worth will come out leaving me drained and fatigued. The best way to describe how I feel is like there is a blockage and the stool cannot be released properly.  As the days go I get more actuate acidic/burning /spasms  and cramping in my stomach.

I have had several specialist do colonoscopies. One of them thought it was pouchitis due to some reasonable ulcers/scaring  in the pouch but then my most recent guy though that it wasn’t pouchitis. After all these years I’m getting super fatigued and feeling at a loss as to what to do to combat this condition that is really effecting my quality of life.
I have tried different courses of antibiotics including flagyl and ciro. They seem to have medium term results but then the syptoms Return in a matter of months.

My new specialist has provided another scenario which I want to Investigate which is FLOPPY POUCH SYNDROME. From what I can find the symptoms seem very similar to what I experience.  

Has anyone one had similar symptoms and figured out what it was or in fact been diagnosed with Floppy pouch syndrome ?

Many thanks in advance as I’m aware it’s not a simple case, but I am determined (and a little desperate) to find a remedy. I guess its always going to be hard with these things.



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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."

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.)

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