Just posted this on the Crohn's board as well...
Well, I thought I might have a diagnosis by now. I thought maybe it was just the fact that my docs in Alaska were not all that bright, or maybe hadn't thought of other possibilities out there, or maybe their methods weren't sound. So I used 50,000 air miles to fly me and my best friend out to Minnesota, hoping that what I'd heard about the Mayo was true - that they'd be able to find, for certain, what is causing so much distress. I spent money on lodging and food to give the doctors time to thoroughly investigate my case. Worst of all, I subjected myself to two more scopings, innumerable pinpricks, ridiculous diets, liters of contrast medium, and a week away from my home for the sole purpose of getting an answer and a quick fix.
The end result: the GIs here are positively baffled. Baffled that I can have such terrible diarrhea, with blood now, in the middle of the night, whenever; fevers; leukocytosis; that huge weight loss; and still have a perfectly normal bowel. They found absolutely nothing in their biopsies besides those areas of erosion, which they said did not mean anything significant. My CT scan was normal. They found blood and white blood cells in my stools, and fevers all week long, which they could not explain. They told me that they have no explanation at all to what this could be, other than a long-lasting post-infectious irritable bowel, for which treatment is a guessing game. Tincture of opium, he said, might help. That and Levbid, plus a daily dose of Citrucel - maybe that will help me through. For who knows how long. He said maybe down the road a bit he'll need to contact me for a new research study to highlight this bizarre illness. Just great.
I am grateful it is not cancer, or IBD, or celiac disease. I should be more thankful that I DON'T have an answer, I suppose; I know that whatever this is will not be life-threatening. But it sure is pure misery. And I'm sure you all know how I feel to some degree. My doctor said this feeling is normal, and he would hate to be in my position or have one of his same-aged children in my position. I just feel very helpless right now, very discouraged. The fact that I had the big D 18 times today and very little sleep last night does not help. I know what I'm going to do - go home, take the drugs every day, change my diet after some research, and hope for the best - but now all I want to do is cry a whole lot.
I'm sure you guys know how I feel. Hopefully I'll be able to be of some help to you now that I've been through the run-around a whopping TWO times. Thanks for all your support.