Posted 2/20/2018 10:43 AM (GMT -5)
I had ulcerative proctitis. My main problem was the rectum, but my surgeon left only a few cm of anus. He removed my rectum and colon. My operation was in 2010. In 2014, I started to flare inside that itty bitty tissue inside the anus and am still flaring. I also have a recto-vaginal fistula, but in order to repair all this and remove the remaining anus, I was told it would be a major, major operation. My surgeon retired in 2013 (just my luck huh?), so I am seeing the head of the colorectal surgery department in a local hospital (in Camden, NJ). My present surgeon told me had he done the original operation he would have performed it exactly the same way it was done.
At the time of my operation, I was very ill, prednisone dependent for two years going into surgery, extremely high BP and prednisone induced diabetes. I suffered with the UP for twelve years and ran the gamut of meds. I found my surgeon online because my GI doctor refused to send me to one. He just wanted to use me as a guinea pig I suppose. Because of the fistula, all my gunk comes out the vagina. I had many tests performed, transvaginal ultrasounds, etc and everything checks out fine in that department, so I know it is all coming from that rectal pouch. There is another woman on this forum who suffers the same as I and told me our condition is known as Horizontal Vagina Syndrome. You can google it, and it does make sense. I have yearly biopsies to make sure there is no cancer. My present surgeon told me the chances of developing cancer in the diseased portion is 0 to 4%. That's pretty good odds of NOT developing it, so I will just live my life (I'm now 71) and enjoy it. I am not in any pain, but have to wear panty liners, no big deal.