Good News!
Good news! I saw the GI doctor today. I saw the amazing pictures of the inside of my small intestine. It is very soft and delicate looking, pale peach colored, almost kind of plush. Which is exactly how it is supposed to be. The plushie bits are the things that absorb nutrients from what you eat, and mine are healthy. This fact, combined with negative blood tests for gluten allergies, mean I don't have Celiac disease! I can eat gluten with impunity! I celebrated this fact by having whole-grain cracked-wheat sourdough bread with Danish butter for lunch. MMMMM, yum!
Also good news was the way the doctor, Dr. Shields, listened to me and treated me with great respect. He and I talked about possibilities and next steps, and the fact that I'm still having these flare-ups of whatever it is. He said "I trust you. You strike me as someone who knows when something is really wrong or not. You have years of experience with your CVID and other problems. If you're telling me something is wrong, I believe you."
This might not seem like a big deal, but trust me, it is. When you consider the years and years I spent going to doctors saying something is wrong, and not being believed, this is like a miracle. Of course I suppose the fact that those other times I said something was wrong it did eventually turn out that I was right about that helps, as I now have accumulated credibility. Perhaps I have the Plus Four Medical Records of Convincingness?
Anyway, we talked about next steps. Barium enema was suggested, to be followed if that didn't tell us anything useful, by another colonoscopy under general anesthesia. We had a discussion about what, if anything, we expected to learn from a BE, and the likelihood that we'd proceed to the second attempt at a scope anyway, and I convinced him to forget the BE plan. Yay! Because it wouldn't really tell us much, he expects, and I've had one before and it hurt. So I have successfully evaded a procedure I didn't want to have (and another bowel prep.) That Plus Four shield comes in handy!
I do, of course, have to do another bowel prep for the repeat colonoscopy, which is tentatively scheduled for October 9, pending confirmation we can get an anesthesiologist for that day. My mom, who recently went through a clear liquid diet herself, advised that pineapple flavor Jello is available and very tasty.
Right. So that's what's happening next. So far we know it is not Crohn's Disease, Celiac sprue, giardiasis, parasites, or c. difficile infection. The leading theories about what is actually wrong are inflammatory bowel disease associated with CVID, or endometriosis penetrating the bowel wall. If it's the latter, that might sort of explain the somewhat cyclical nature of the flareups, though since I have no ovaries, am on hormone replacement and not cycling, that sort of evades logic. But then when has my body ever followed logic? The hope is that the repeat colonoscopy will shed some light.
Another thing I learned recently, since I started seeing a chiropractor, is that I have six lumbar vertebrae! Ninety percent of people have only five, but a lucky ten percent of the human population have six! It makes my low back extra curvy, explains the reason I can never get pants to fit right, and possibly contributes to the way I walk, which other people have sometimes laughed at. It's kind of cool, really. I'm a Mutant! call Dr. Xavier!
In other medical news, we finally got the cultures back on Izumo's abscess, and not surprisingly, the bacteria he's got, Pasturella something-or-other, is resistant to both antibiotics I had him on before, which explains the recurrence. He gets some yummy, nummy raspberry flavored Vibramycin now, to which the nasty buggies are susceptible. Hopefully this will spell the end of the eye socket infections and he can go on about his business being a ruggedly one-eyed pirate rat.
Last but not least, I've been wondering whether it's bad form for me to talk about my health situation here. I mean, it's my reality and it takes up a lot of my time, but on the other hand, it might give you the false impression that I am really down hearted and pessimistic, and it's the only thing I think about, which it really isn't. I'm sure it's weird to have a friend who is chronically ill. I know it's a relief to talk to someone else with a similar illness, because we can drop the facade a bit and not worry about what each other thinks so much. But I don't really know what the right thing to do is. I'm trying to strike a balance here. What are your thoughts?
Also good news was the way the doctor, Dr. Shields, listened to me and treated me with great respect. He and I talked about possibilities and next steps, and the fact that I'm still having these flare-ups of whatever it is. He said "I trust you. You strike me as someone who knows when something is really wrong or not. You have years of experience with your CVID and other problems. If you're telling me something is wrong, I believe you."
This might not seem like a big deal, but trust me, it is. When you consider the years and years I spent going to doctors saying something is wrong, and not being believed, this is like a miracle. Of course I suppose the fact that those other times I said something was wrong it did eventually turn out that I was right about that helps, as I now have accumulated credibility. Perhaps I have the Plus Four Medical Records of Convincingness?
Anyway, we talked about next steps. Barium enema was suggested, to be followed if that didn't tell us anything useful, by another colonoscopy under general anesthesia. We had a discussion about what, if anything, we expected to learn from a BE, and the likelihood that we'd proceed to the second attempt at a scope anyway, and I convinced him to forget the BE plan. Yay! Because it wouldn't really tell us much, he expects, and I've had one before and it hurt. So I have successfully evaded a procedure I didn't want to have (and another bowel prep.) That Plus Four shield comes in handy!
I do, of course, have to do another bowel prep for the repeat colonoscopy, which is tentatively scheduled for October 9, pending confirmation we can get an anesthesiologist for that day. My mom, who recently went through a clear liquid diet herself, advised that pineapple flavor Jello is available and very tasty.
Right. So that's what's happening next. So far we know it is not Crohn's Disease, Celiac sprue, giardiasis, parasites, or c. difficile infection. The leading theories about what is actually wrong are inflammatory bowel disease associated with CVID, or endometriosis penetrating the bowel wall. If it's the latter, that might sort of explain the somewhat cyclical nature of the flareups, though since I have no ovaries, am on hormone replacement and not cycling, that sort of evades logic. But then when has my body ever followed logic? The hope is that the repeat colonoscopy will shed some light.
Another thing I learned recently, since I started seeing a chiropractor, is that I have six lumbar vertebrae! Ninety percent of people have only five, but a lucky ten percent of the human population have six! It makes my low back extra curvy, explains the reason I can never get pants to fit right, and possibly contributes to the way I walk, which other people have sometimes laughed at. It's kind of cool, really. I'm a Mutant! call Dr. Xavier!
In other medical news, we finally got the cultures back on Izumo's abscess, and not surprisingly, the bacteria he's got, Pasturella something-or-other, is resistant to both antibiotics I had him on before, which explains the recurrence. He gets some yummy, nummy raspberry flavored Vibramycin now, to which the nasty buggies are susceptible. Hopefully this will spell the end of the eye socket infections and he can go on about his business being a ruggedly one-eyed pirate rat.
Last but not least, I've been wondering whether it's bad form for me to talk about my health situation here. I mean, it's my reality and it takes up a lot of my time, but on the other hand, it might give you the false impression that I am really down hearted and pessimistic, and it's the only thing I think about, which it really isn't. I'm sure it's weird to have a friend who is chronically ill. I know it's a relief to talk to someone else with a similar illness, because we can drop the facade a bit and not worry about what each other thinks so much. But I don't really know what the right thing to do is. I'm trying to strike a balance here. What are your thoughts?