I've had my pouch since 2007 after being diagnosed with Ulcerative Colitis in 2005 at the age of 15. After 17 years with no major complications, this past November, I found out I had a fistula that began in the anal canal and traveled to the base of my penis. It has caused abscesses to form in my scrotum, and I've had 4 surgeries total since November, 2 of them being only 3 weeks apart last month in May. My care team decided it was time to start me on Remicade, because they think the fistula is due to Crohn's or some type of perianal disease (even though they've flip-flopped MANY times on their diagnosis).
After my most recent surgery on 5/29, I was given my first dose of Remicade while admitted in the hospital and was discharged home on IV antibiotics on 6/1. I had my 2nd dose of Remicade on 6/17. This past weekend, the scrotal abscess came back. I went to a different hospital this time, where it was drained at bedside and I have an appointment for a third opinion tomorrow (my first surgery in November was with a different team than my current one).
I went to a different hospital because I feel like my current colorectal surgeon is just guessing at this point, and has suggested reverting to an ostomy in order to stop what is going on. My GI happened to slip and tell me that my colorectal surgeon mentioned to her that she was worried that they are "missing something" during my last admission.
What confuses me is that my original surgeon had a plan to do some sort of repair on the fistula using health tissue to cover it after 6-8 weeks of having these drains called "setons" placed (essentially rubber bands that keep the fistula open and draining). My current team said that they don't know how that would have been possible, since I don't have a colon?
I am at such a loss and so defeated. I'm turning 34 this summer and can't imagine having to live with an ostomy. Has anyone here with a j-pouch ever dealt with a fistula before? What was the end result?
FYI - this fistula coincidentally happened only 6 weeks after my pouchoscopy. I am convinced something went wrong during the procedure, because fistulas can be formed from trauma to the area. But of course, no doctor will admit that.