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Crohn's and enterovaginal fistulas? UC diagnosis changed to Crohn's after 43 years

Hello,

I have ulcerative colitis from 1972-1988 when I have colon removed and J pouch created in three operations.

Then needed a liver transplant in 1997.

Now I have an enterovaginal fistula that started in late 2014, went away completely (no symptoms), then came back much worse three weeks ago. Now symptoms are subsiding (almost gone again). Meanwhile, I have had tests and have surgery scheduled May 12 for an ileostomy, to be followed by fistula repair and then I hope, a takedown of the ileostomy, though surgeon at Emory is honest that with my history, it may not be possible.

Though I have no symptoms of Crohn's, he saw inflammation of the Jpouch during an exam and thinks I have it.

So I am looking for anyone with a similar experience, anyone with actual Crohn's who has developed an enterovaginal (not another kind) fistula and anyone who has had this kind of fistula that comes and goes. Last week I was completely incontinent. This week, it's a spot here and there. There also seems to be a connection with my use of Estrace, an estrogen creme inserted vaginally. Twice now, I have used it and the fistula became active. I stop using it, symptoms subside.

I am on the fence about having major surgery and getting an ileostomy with manageable and rapidly subsiding symptoms. Why not just wait, I wonder?

Also wondering why surgeon hesitates to repair fistula if I will have the ileo -- why not do it at the same time instead of having three surgeries? I have a call into him, but any advice would be helpful. In the meantime, I had to change one of my post transplant medications from one that hinders wound healing to one that is damaging to the kidneys, so not happy about that.

Thought these days were long behind me. Appreciate all advice and wish you the best. If I can answer questions about colon removal, temp ileo and j pouches, I am happy to do so. My jpouch is 27 years old and working pretty well (I think!)
 
Hello!
I just wanted to check in and see how you are doing. Did your planned surgery go ahead?
Please do update if you have the opportunity. I hope that you'll find this forum helpful with your treatment going forwards with this new diagnosis of Crohn's.
All the best
 
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