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Re: Never knew there was a name for this...
It's been a few years since I posted to this board. Your post, Vitriolic, really made me realize how devastating this condition could be when coupled with Crohn's. I have shy bowel and my ex-husband had Crohn's. I could never go and he could never stop going. We found the humor in our ironic situation and had quite a few good laughs over the years. But, fortunately for him, he could always go wherever he needed to. I can't imagine having to live with both Crohn's and shy bowel! I hate that you have these conditions and hope that your Crohn's improves with age as sometimes it does. As for shy bowel, I don't know. I'm no better than I was years ago despite the fact that I've tried every cure under the sun. The best treatment for me has been to avoid putting myself in impossible situations. I have come to the point where I realize that I have a handicap and I need special considerations. My fiance is very understanding and respectful. He's seen the pain living with this condition has caused me.
Having a daily routine has probably helped me more than anything. Knowing I'll have privacy at a certain time each day is key. Not ever knowing when I'll get privacy is HELL! I was diagnosed with IBS years ago and there is still so much they do not know about that condition. I firmly believe that there is some type of connection between IBS and shy bowel. When scientists figure out more about the brain gut connection, we may all finally get some relief.
Until then, my heart goes out to you, Vitriolic and all the others on this board who live with these cruel conditions. I wish you the best!