Hello, I'm looking for EVERYONE who has had experience with a pouch/vaginal fistula. I've had my pouch for over 20 years - no problems - developed a fistula about 1.5 years ago. They tried a minimally invasive repair at Mayo in Rochester, MN but it failed. They can't enter rectally or I will lose all continence - entered vaginally and stitched it up but didn't divert - which was the error I'm sure. However, may not have even worked with a diversion. Going back to my original surgeon at the Univ of MN and want to know if anyone's had one of these repaired successfully and what was done. Thank you!
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I'd see Shen at Cleveland Clinic
Yeah, I've had my pouch since 1993, and developed a pouch-vaginal fistula in 2010. You can do a search to find my details, if interested, but in a nutshell, I've gone to Cleveland Clinic, saw Shen, he tried a few things which sadly did not work. He sent me to a surgeon up there who placed a draining seton in 2012. Still have the seton, only viable surgical options are pouch re-do or pouch removal. Will probably stay with seton until something occurs which forces a decision.
PM me if you'd like to chat further!
PM me if you'd like to chat further!