I have one. It took forever to diagnose but I believe it started around 2005. I have tried to close it with antibiotics, Humira, Remicade and now I am on Entyvio. My GI was able to see it for the first time during a flex sig. a few months ago, they always said it was to low to be seen with the scope. Now that he has seen it he says it's to large to close medically. I did go back to the Mayo Clinic in 2014 where I had my original J Pouch surgery (in 1996). They would have done a flap surgery. I would have to have a colostomy bag to let it heal. They would try to take it down at some point maybe after a year but from my research the chances are high that it won't heal properly or another one could form. The surgeon I saw in my town of Las Vegas, NV won't touch it. She would just divert to the bag. I have always had loose stools and for the last 20 years I would go 10-15 times a day with leakage through the rectovaginal fistula. I get a lot of irritation from this of course. In July I had to go to the ER for fecal impaction. I have a stricture and my GI will usually dilate once or twice a year. I had him do this plus he put me on Linzess 72 mg (is all I can take or I am on the toilet with watery diarrhea and fistula drainage for over an hour) even at the 72mg I am in for about 30 min. I also have to take muralax and collace later in the day to be able to pass stool the rest of the day. I am so tired of dealing with all of this and there doesn't seem to be much hope for a better quality of life. I was originally diagnosed with universal ulcertive colitis. After the fistula developed they now say I have Crohn's of the pouch which is why it is so difficult to treat I am told.
