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I saw Dr. Shen at Cleveland Clinic this week, and he uncovered a few issues with my pouch. Apparently I have paradoxical contractions, in addition to virtually no nerve activity whatsoever. This combination makes emptying my pouch very difficult unless I live on grapes to give myself diarrhea.
He wants me to try biofeedback to see if we can retrain the muscles to work correctly. Seriously- I didn't know there was a wrong way to poop! He wanted me to get the therapy in Cleveland, but there is no way I can stay for that length of time, or make that many trips. He said he would be happy with someone local only if they had experience working specifically with j-pouches.
So how do I find one of these therapists? Has anyone had experience? Does anyone know of one on the west coast? Help!
Ulcerative colitis 5/09
Step 1 9-23-09
Step 2 1-15-10
Developed Gastroparesis 4/10
Gallbladder removal 6-17-10
I worked with a rectal physical therapist in Los Angeles. Two visits and many exercise variations later, she fixed my problem. They are very hard to find but try going to a regular PA just to access their glossary of PAs in the country by specialty.
Wise men talk because they have something to say; fools because they have to say something. ~Plato
Please let me know how you make out. My daughter is starting biofeedback tomorrow for constant pelvic pain. She has had every test, scope and the only thing that she was told is that she has sharp angles in her intestines. She can't function on the med for the pain so she is trying biofeedback.
We just did a search online for biofeedback where she is at college.
Hope you find someone and it works for you. My daughter is at the end of her rope.
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