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8 replies

Recent visit to Cleveland -- chronic butt burn and pressure

S scallopMember
My redone pouch is over 10 years old and still I have chronic burning, pressure, and trouble emptying. I just spent a few days at the Cleveland Clinic (where my pouch was re-done) and after experiencing several creative approaches to looking up my rear end, here is what they found:

I have what they call primary anismus or a "paradox" in that my muscles are not working properly together to expel the poop. When I contract the pouch (as I should) I simultaneously tighten the anal opening so I don't get complete emptying. Drs. Shen and Remzi think that if I come to Cleveland for 2 weeks of biofeedback/physical therapy I have a reasonably good chance of getting rid of these symptoms. Just wanted people to know in case they have the same problems.

A discouraging note -- Dr. Remzi was particularly interested in me because they really don't know how long these redone pouches will last (and mine
was done by Fazio).
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J jeaneMember
My first question is why was your pouch redone? Next, when you say contract the pouch are you indicating you push or bear down to empty your pouch? I have had many issues similar to what you are describing with the chronic burning, pressure and trouble emptying, but mine have been stricture related. I understand about the biofeedback and hopefully this will help you. I will tell you what helps me completely empty my pouch is taking a squirt water bottle and basically squirting the water up at my back end (not within). This always seems to help me expel the last amount of stool (as there always is more) that does not come out on my first pass of emptying my pouch.
S scallopMember
Hi Jeane -- I don't have a stricture -- they surely would have found that with all the tests they did. My re-do was for a chronic leak and abcess at the anastamosis. This occurred during my original colectomy and j-pouch construction. I don't think the squeeze bottle will work for me because I have a bidet which is basically the same concept. But, thanks for the suggestion. I'm not exactly sure what I do but I think I strain and don't relax the anal sphincter at the right time unless I'm having an explosive poop that pops right out.
LorsallLorsallMember
I was told the same thing when I saw Dr. Shen last week. I have paradoxical contractions as well. I am not able to come to Cleveland for the biofeedback, but I have been able to locate someone closer to home that has j-pouch experience. Unfortunately, she is booked 8 weeks out, but it is only a 3-hour drive from my home and I have family to stay with so it is a more ideal situation for me. Are you being given 10 sessions in that two weeks?
R RobberlostMember
Hello, first time here, I've had my j pouch for 8 yrs and I also have difficulty emptying from time to time, I've always called this 'being blocked'. This almost always happens after I've eaten too much pasta or breadie foods, I know it sounds weird but I was wondering if anyone else experienced this after eating certain foods ? Its like walking on the blade of a knife i.e.: too much this way or too much that way can have severe consequences. Its maddening and drives me up a wall
R Rebe0505Member
scallop that is so interesting cc was able to distinguish that from say just a zillion other reasons..i have had pouchitis or now diagnosed as bacteria overgrowth so i think everything related to that..i also experience burning from time to time when i go,not completely emptying,going a lot at night and so on with above or diet..its crazy how many things that be going wrong with the pouch..yikes!!and hells,bells these are he less serious!!!!

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