Hi, I've had this lovely illness for over 10 years now. (I don't know why I had the impression that it would "burn out" but I remember Dr. Yazici telling me that when he diagnosed me in 2004 so I am pretty bummed that I still have it.) And now I'm even more bothered because it seems to be attacking my intestines and it's not only super painful, but a little scary because of the risk of perforation.
So not only do most doctors not know much about Behcet's here in the US, but they know even less about Gastro Behcet's. I'm really frustrated because no one knows what to do. The doctors were initially so off about the problem that they removed my gallbladder in an emergency surgery because it was so inflamed. But 2 months later I went into the ER for the same intense pain and they did more tests (that they should have done before surgery) and it turned out my stomach wall was so inflammed it was pressing on other organs - and there is at least one giant ulcer inside that has been bleeding. They put me on regular peptic ulcer meds hoping that would help but it hasn't and I've been in a lot of pain for almost another month.
Does anyone have experience with Gastro Behcet's? What was it like? What can you do for it?