Hi Everyone, it is my first time posting here. I have used this forum as support and it is good to know that we are not alone in our struggles. I’m looking for advice, maybe some of you have been through what I am going through.
I was was diagnosed with ulcerative colitis at age 5, went into remission, and then at age 13 got hit hard eventually leading to total colectomy and J pouch creation. (It was done in 3 steps)
everything was fine after that for 13 years until I developed an abscess which turned out to be a fistula. The fistula has its internal opening at the site of my anastomosis with my pouch. There was some inflammation (no confirmed Crohn’s) seen when inspected under anesthesia but my pouchoscopies are looking clean.
Drs are suggesting pouch advancement surgery but they are saying they may not be able to do the surgery transanally and may have to open me up anteriorly again. They have also notified me of a chance of pelvic nerve damage which would affect my sexual function.
Has anyone been through anything like this?