Hi, JiminMaine...I'm Sharon in Maine and so happy to know I'm not alone here! Your recent posts came in the nick of time as they helped me realize why I've been struggling so much in recent months. I am in immediate need of anal dilation and there are other issues too which remain to be diagnosed. Moved here from Ohio -- where my pouch was constructed by Dr. Victor Fazio of Cleveland Clinic in 1987 -- six years ago and have never hooked up with any GI or colorectal surgeon since. So very few choices in the state, and no way to judge their expertise, so I felt discouraged and just tried to soldier through...very bad plan.
I just called the colo in Portland and left a message asking straight up if she is familiar w the pouch and have yet to hear back after two days! That might be my answer. I'm intrigued by the idea of the Lahey given your satisfaction w their services, but also considering Langone w Feza Remzi, who studied under and worked for years w Fazio and is the cream of the crop. That would be a very difficult trip though as my ongoing pouch issues have left me housebound. And as we all know it won't be one trip but two or more pretty close together. All I know is that it's time to act, no matter how difficult, expensive, etc.
I am receiving the dilators tomorrow as I need prompt assistance while waiting to see someone. I was so glad to hear your dilation procedure went well and that you are feeling better. Do you see a local gastroenterologist? Dont know where you are in the state, but maybe you could give me a recommendation.
Thanks again for sharing your experience and providing all the detailed info from your surgeon. You saved me just as I was truly getting desperate. Would love to talk by email sometime if you're up for it.
Best wishes, Sharon