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