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Does anyone else have this? My surgeon said it’s common in older pouches of thin women. I’m not sure how to describe it, you can look it up, but it’s messing with my intestines as they are moving around too much and causing blockages. So far I’ve had 4 surgeries and I’m still not fixed. Going for more testing this week. Pouch is now 23 years young.

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I felt like my intestine was getting floppy and use of psyllium powder seemed to help it gain integrity, which helped avoid the blockages that happen when the intestines are anchored to something (like the stoma scar) and can't float free, so they get wrapped around themselves.  This was not specific to the pouch; just general gut health.  I couldn't find much on the web about floppy pouch syndrome, or at least nothing that was very informative from the perspective of a person with a floppy pouch.

Last edited by Sara Marie

Hi @AllyKat. Floppy pouch refers to a tendency to develop mucosal prolapse - folding of the lining of the pouch. It can create blockages, pockets for bacteria to accumulate, etc.  It is said to be more common in tall women with little abdominal fat - sometimes described as  "fashion model physique."    So that was some comfort when I was told I had it.

I developed this within the first year of takedown and have since had what I think of face lifts for my pouch to address it.  The folds are tightened with tiny bands during an endoscopic procedure. The bands fall off and the prolapsed tissue is tightened up.  It has worked well for me both times.

Where do you go for treatment?  What kind of surgery has been done for your floppy pouch?

Oh thanks mine is causing the intestines to pull down and move and twist. The pouch is actually fine. The mensmenery  not sure if I’m spelling it right is very loose and floppy from what my surgeon keeps saying is happening. That keeps the intestines together.
My surgeon told me to gain weight, I’m too skinny, lol

my pouch is 23 years young

he has sewn my intestines to the wall twice already. I also had a procedure thru the anus to untwist it, he’s trying to find the spot radiography before he has to go back in. Nothing showed on my last mri or scope

he thinks I have a long piece of intestine twisting on and off itself as this comes and goes.

I’m glad what ever your surgeon is doing for you is working. I can be fine one minute and miserable and in pain the next and no matter what I eat does not stop it. Hello I had a cup of tea and then bent over in pain! Ugg

I’m in NYC teaching hospital and he’s seen this a lot. At least he believes me. Said worse case I’d have to have a temp ostomy as that seems to reset things I guess similar like your procedure but I’m not for this. I had something similar happen 7 years ago. No one could find the cause and they thought it was the pouch even though it looked good. I had the ostomy for 6 months and have been fine since so who knows if this has been a long term issue. I wonder too if this has been the case of my pouchitis issues.
still feeling like a Cornel experiment but I’m not loosing this pouch. I’ve fought too hard to keep it.
thanks for replying I feel alone in this issue even though I was told it’s common now.

There was a great paper published last year: Diagnosis and classification of ileal pouch disorders: consensus guidelines from the International Ileal Pouch Consortium.  It describes all of our many complications and pouch conditions, including discussion of floppy pouch.  If you'd like a copy, private message me with an email address and I will send it along. Perhaps your doctors was one of the many consortium members of the consortium.  

Surgery 2 weeks ago at Cornel NYC to fix it, turned out I had a defeat from the original surgery 23 years ago causing a internal hernia and intestinal  twisting. Also have floppy pouch. Other issues than you.

At  any rate if Dr Schen can fix it I would do it. I’m surprised you don’t get blockages from it. Good luck.

Last edited by AllyKat

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