I have an appointment with a colorectal surgeon tomorrow. So I'll know more but I expect the surgeon to naturally want to fix it with a surgery...I wanted to see if anyone has had the same experience and if anybody is living with a fistulae without having had a surgery performed.
fistulas don't just go away and are very hard to surgically repair.
Just saw this separate post. Yes, I agree there is no easy way to repair a fistula. I personally had bands or setons placed in the tracts to keep them open and prevent them from closing and causing an abscess. Shen wanted my to try hyperbaric oxygen but it made no sense in my head how oxygen could help close a tract that is being held open by a seton and it is a lot of dedication to do hyperbaric oxygen. At that point, I was 95 percent ready to give up my pouch anyway. My surgeon at Cleveland clinic attempted to cut the fistula tracts out which I would ask A LOT of questions about before you went that route. I saw Remzi in NY for another opinion a year later (still had 5 percent of me that wanted to keep the pouch) and he said that my sphincter muscle control wasn’t as good (which is death to the j pouch!) and an MRI still showed a fistula tract present. Are you kidding me?!? So that is why I am hoping yours is not a fistula tract or maybe it is in a better location than my two and can be dealt with differently!!
And I just want to reiterate that I had rectal symptoms off and on the entire life of my J pouch. I don’t want to freak you out about losing your pouch! I had skin tags and fissures and my diagnosis was changed from UC to Crohn’s. So everyone’s story is very different.