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.
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.
Please, I would appreciate a copy. Thank you so much for sharing this information with. Elle (I am from Louisiana)
e-mail- elelb@att.net
Well after a special ct scan I have basically a long bowel that messing up my insides. It’s called a redundant bowel. So I’m having a resection to fix this. Oh joy, this pouch never stops giving.
@AllyKat posted:Well after a special ct scan I have basically a long bowel that messing up my insides. It’s called a redundant bowel. So I’m having a resection to fix this. Oh joy, this pouch never stops giving.
I'm sorry, but I guess surgeons aren't trained to do it right the first time? I'm confused by all these re-do surgeries people have to get.
Actually a resection is what he was hoping to avoid, thus trying less evasive procedures first. Bummer, these surgeries are taking a toll but I totally understand why. Rendudant bowel is part of this floppy pouch complex I’m learning.
Oh, so the re-do is a result of an imbalance in the body which causes and issue, in this case, floppy pouch syndrome, and the initial surgery didn't cause the problem?
Well sort of. If I never had surgery the long bowel would have probably not caused issues of this kind cause the large bowel would have held everything together. Age of pouch and low body weight are not helping matters.
I kinda wish I had kept my colon. The reason for the j-pouch was colon cancer-1 tumor near the anus. I had UC before the cancer, but it was pretty well managed. The UC caused less trouble than the j-pouch.
Sara, I don’t think you had a choose with cancer
I did have a choice. I could have just had them take out the tumor or the whole colon. They encouraged me to get rid of the whole colon. I was kinda freaked out, so I didn't get a second opinion.
Oh I’m sorry. I most probably would have done the same thing.
@AllyKat with the floppy pouch, did you experience difficulty with having a bm while sitting down? With me in not able to sit and have a bm, I have to lay down on my side. I'm in the Midwest and I travel all the way to NYC to go see Dr. Shen in Columbian hospital. He said he can fix my floppy pouch with surgery.
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.
@AMB posted: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.
I would like a copy too, please. Will send you a PM.
@AMB posted: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.
Do u mean the Dr. Fazio 2nd annual Symposium event in Mid-September?
That was a great symposium, but the article is a separate publication.
