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Reply to "Defecography results"

John,

The doctors at Mayo Clinic in Rochester did a similar test on me last fall.  They say my pouch is not emptying properly and the residual is what is making me miserable.  My pouch acts like I still have chronic pouchitis, but other tests  indicated I have "no active disease", evidently because of the Entyvio infusions I'm getting every 6 weeks. 

They say what I have is Non-Relaxing Pelvic Floor Dysfunction, and I am scheduled for a 2 week therapy session at Mayo in August to retrain my pelvic floor muscles.  Evidently my muscles are squeezing instead of relaxing when I try to "go".  They say this condition is more common when there are complications in the take-down surgery, of which I had way more than my share.

Sounds like you may have already had a similar therapy.  I am not overly confident the therapy will help me, but this seems to be my only hope for improvement.  I'm having 12-14 BM's a day and almost constant pouch discomfort and sense of urgency for the last 3 years :-(. My pouch is 18 years old and I've had chronic antibiotic resistant pouchitis since day 1.

I hate my pouch, but hated the ostomy I had for 6 weeks before my takedown even more.

I hope you are getting some relief.

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