I had UC for 15 years & had the jpouch surgery in 2005. The first 10 years or so afterwards I had almost no issues, but the last 4 have been extremely rough with almost constant fissures. A fistula has developed & I have been in excruciating pain. I can't tell if the pain is coming from the fistula or from a fissure. I have been to 2 GI doctors and 2 GI surgeons and I get different answers from all of them. I feel like they have no idea what they're doing, and I don't know what to do.
Raphael, I think you are prob. close when you say they seem to not know what they are doing. I think they are really hard to get rid of. My surgeon put a stitch in mine and it healed a bit later. I now have stricture. I honestly don't know if they are related, but I know they all seem to not want to deal with the fistulas. I guess we just have to go with our guts and pick who you believe to know their stuff. Good luck with who you decide to go with. Keep us informed.
I will caution you against letting them to a traditional “lay open” fistulectomy. They did that to me and it left me incontinent. I’ve since had a spinster repair, use thicken meds and a cotton ball tucked up there and have a spinal chord stimulator. I do ok with it (still love my life and deal with occasional accidents). Docs who did my repair said the traditional lay open surgery should never have been performed on someone with a pouch. Humira or a seton are various options to treat a fistula other than surgery. Best of luck!