Fistula post-proctocolectomy

I have the same exact problem! I still have my anus. My colon and rectum were removed. My operation was in 2010. In 2014, I started having issues....pressure in rectum mainly. Since my surgeon retired in 2013, I started seeing another surgeon. My disease is back inside the itty bitty tissue that was left inside the anus. They said to operate would be too much for me. Here's the scoop about the rectovaginal fisula though....the day I came home from the hospital, in 2010, I felt like I had to urinate and all this foul smelling gunk came out my vagina!!! When I called the surgeon, he thought I meant it came out my anus. I know my anus from my vagina. I did develop an abscess inside the anus shortly thereafter and at my follow up visit, my surgeon drained the abscess and placed me on antibiotics for two weeks. Then I went back for another checkup and all was well. However, I've had spotting and mucus coming out my vagina ever since. I had PAP tests, transvaginal ultrasounds, CT scans, etc. They cannot find the fistula, but all agree it must be in there up under the rectal cuff. No one mentioned a seton drain. Is that because you are sewn closed? I never had a scope of the small intestine either, no reason to have one. I had the test where they insert a dye into the vagina to see if it comes out the anus and it didn't! Maybe if they inserted it into the anus? OY! The doctors also told me that since I don't use my anus to defecate, there is no reason to operate. I have to wear a panty liner because of the spotting and mucus. I have no idea how this happened either, I tend to think that maybe when all that gunk came out of me back in 2010, something tore?

I'm not having pain, thank God. It seems like it comes and goes. I have no idea what the heck is going on, and I don't think the doctors do either. My new colorectal surgeon said for me to keep up with the yearly biopsies just to be on the safe side. I asked him to be frank with me and to tell me what chances are of me developing cancer inside the anus. He told me 0 to 4%. Those sound like pretty good odds. So, for the time being, I am suppose I'll just follow his directions with the yearly biopsies. They are not painful because it is done under anesthesia AND best part, no prep!