I was just reading on a Crohn's message board. It surprised me how little I relate to this. It has been over 12 years since I got my dx. I spent the first eight or nine of those years on a roller coaster with my health, and of course several years previous to diagnosis. The last three or four years have been pretty good. Truthfully, I think if I'd had my current GI from the outset, I wouldn't have had so many bad years. But that's all in the past.
Anyway it occurred to me awhile back that I actually know much more about Cushing's than I do about Crohn's. Oh, I know how it affects me, but have very little knowledge about the disease in general. I thought I should check and see what patients were saying.
What really surprised me, or maybe not, was how prevalent prednisone still is. Oh my! There are so many meds out there now, I wonder why pred is still so common.
I haven't read enough to see how hard a time people are having getting a diagnosis. It really wasn't that hard for me to get a dx. Just took a couple of years because after a few tests in the beginning, doctors were only having me test when I was sick. Which seemed smart to me. I would be very ill for about 24 - 48 hours and then be perfectly fine. Sometimes I had many months between flareups.
My family doctor was the one who did some of the first tests. One of the first he ran was a 24 hour urine collection. I honestly don't know what he was looking for and back then I never asked as many questions as I do now. I was probably a dream patient as I asked very little and questioned protocol even less. And I did no research until after I had been diagnosed. But back to my urine test. Dr. John gave me the collection jug and told me the next time I was sick to collect for 24 hours then just turn in either at the lab (in the hospital) or at the nurses' station if the lab was closed. Well, the lab was closed when I took it in so I went to the nurses' station.
When I am really ill, I have terrible diarrhea and of course that means a lot less urine. So the jug (about gallon size) had about an inch or so in the bottom. The nurse I turned it in to looked at the jug and said "Obviously you didn't understand, you were to collect ALL of your urine for 24 hours." I guess she didn't understand that when you're sick nothing is "normal."
Next, I think he had me admit myself to the hospital when I was sick and they ran a lot more tests. Ruled out a lot. Dr. John's son was in practice with him and I remember they both came to see me the second day I was in the hospital. They were leaning against the heat register talking about me when I heard the son say that maybe it was stress related (I already didn't like him much and even less after I heard that) and I was so happy when I heard Dr. John say "No, because she never got sick when her mother died." He didn't even say "probably not" or "I don't think so" he just said "No." And he was right, I'd gotten through Mom's death and the following months without ever getting sick.
I think it was after that hospitalization that he referred me to a specialist.
It just seemed odd tonight to be reading so much personal stuff about Crohn's and find that it didn't move me in any way. Maybe another day I would feel differently. Or maybe it makes a difference that I've been feeling pretty good for quite a while now.
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