Hi Everyone -- I've had my pouch since 1999 but it's never been great.  Initially made at Stanford in 1998 and redone by Dr. Fazio at the Cleveland Clinic in 2001.  I limped along for years until it got worse in 2019.  I saw Dr. Shen at Columbia in 2021 who did his "magical" banding for a prolapsed pouch.  Mostly, the banding left me in chronic pain.  It might have helped the prolapse - I don't know.

I finally went to see the wonderful Dr. Hull in Cleveland in July 2023.  She did all the tests - pouch MRI, defocography, pouchoscopy under anesthesia, gastrografin.  She found that my pouch has an extra chamber and simply doesn't empty properly.  She even had a hard time irrigating it out when I was under anesthesia. 

She said the pouch could be re-done but it's too risky given my age (66) and number of surgeries and didn't recommend it.   She presented 2 options: 1- pouch removal and permanent ostomy and 2- using a catheter and irrigation 3-4 times/day.

I've been using the catheter and it has dramatically improved my pain but it's quite inconvenient, especially if I want to be out and about for long periods of time or for traveling.  I still poop on my own multiple times/day.

I don't have a specific question - I'm just looking for someone else who is doing this long-term so I can have someone to talk to about the ups and downs of this method.

Thank you!

Debbie

Feel free to PM me