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.
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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.
Aimee
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!