Today I had an EUA and another seton placed for a reoccuring fistula. I now have 2 setons in my bum I was diagnosed w/undetermined colitis in 96 and had my pouch surgery. Now the docs keep going back to the possibilty of crohns. However the colon rectal surgeon said there is a hole (or possibly a tear ) where the pouch is connected to the anus and that could be possibly causing the fistulas as well. He said it's to far up and doesn't think it can be repaired. Also the other kicker is they have found another fistula that has a small tract that is leaking between my pouch and vaginal wall. This hasn't leaked or broken into the wall of my vagina and the dr doesn't think it's a cause of concern and doesn't think it will, he said it's probably always been there. He also doesn't think he can get my fistulas to close. Has anyone ever heard this before? Should I be worried? I am so confused, fustrated and sad. I really really want to have a baby. Am I over reacting?
Any feedback is appreciated :P Tracy
Posts: 7 | Location: Wisconsin | Registered: March 26, 2008
Tracy, Have your doctors discussed any medications with you? If they think it's Crohns then I know that people on this board have used Remicade, 6MP, Humira, etc to try to heal them. Perhaps that could be an option for you. I'm sorry that you're dealing with this.
I'll walk this winding road into the great unknown.
Hi Pixie Thanks for the reply! The doctors have mentioned Humira. I would be fine with that but I really don't think I have crohns? I think all of my problems are mechanical. All the tests so far have come back favorable UC or undetermined. What really worries me is this small pocket of infection or stool that is between the front of my pouch and my vagina. From what I have read on here so far a vaginal fistula is even worse. I have to go in for yet another endoscopy to rule out crohns. I can live with the fistulas if they really can't be fixed but I am still unclear as to what difference it would make how far up or down the opening is located and why it can't be sewn closed?
Posts: 7 | Location: Wisconsin | Registered: March 26, 2008
Fistulas are one symptom of Crohn's. I believe what my doctor described about the continuum of this disease, that they are all related, on a long scale, with IBS/IBS at one end and full blown Crohn's at the other, and a whole host of intertwined and interrelated symptoms in between. It makes sense, when most doctors are unable to definitively tell you which one you have or don't have. So the fact that you didn't start with a Crohn's diagnosis doesn't mean your disease has not developed into Crohn's, by this theory.
I was a U/C until my pouch, prior to takedown, began to develop "Crohn's-like fistual-like growths." Three Remicade infusions and they were gone and we proceeded to takedown. I gained the Crohn's diagnosis as my insurance company would not have covered Remicade at that point otherwise.
My Crohn's diagnosis was confirmed with a pouch-vaginal fistula in June of 2006, right before my daughter's wedding. I went on Cipro to prevent any attending infections and my fistula closed up. I have been on prophylactic Cipro ever since. My pouch looks better than ever, so my doctor says "Why change the treatment?" I agree. Until Cipro quits working (maybe I will be lucky and never face this), this is my choice. I underwent tests of the pouch, all not definitive, but have as yet to have any kind of a scope to diagnose whether what I have is Crohn's or not. Scoping is invasive, and my surgeon and I both agree we want to avoid invasive procedures. If the problem is known, I would shoot for treating the known problem!
I guess I would see if another colo-rectal surgeon/specialist has something else to offer. There are surgeons who specialize in pouch problems. It might be time for a second opinion.
Posts: 165 | Location: Seattle | Registered: November 23, 2007
If a doctor would tell you that you have an opening in your pouch and you were getting a small bit of leakage between your pouch and vagina would you agree that this wouldn't turn into a vaginal fistula? I don't understand why he wouldn't want to fix it? I am afraid I will end up w/a vaginal fistula sooner or later.
Posts: 7 | Location: Wisconsin | Registered: March 26, 2008
I was diagnosed w/undetermined colitis in 96 and had my pouch surgery. Now the docs keep going back to the possibilty of crohns. However the colon rectal surgeon said there is a hole (or possibly a tear ) where the pouch is connected to the anus and that could be possibly causing the fistulas as well. He said it's to far up and doesn't think it can be repaired. Also the other kicker is they have found another fistula that has a small tract that is leaking between my pouch and vaginal wall. This hasn't leaked or broken into the wall of my vagina and the dr doesn't think it's a cause of concern and doesn't think it will, he said it's probably always been there. He also doesn't think he can get my fistulas to close. 
