I've been off of the prednisone for a little over two weeks. After ten days I was feeling really good, better than I have in a long time. But then my stool became loose again. Not diarrhea, but loose. My husband suggested I take an anti-diarrhea pill. I did, and it helped firm my stool up, although not as well as it had been. Nevertheless, it seemed to work so I'll keep taking anti-diarrhea pills when needed and see what happens over the next month. And in every other aspect, I feel pretty good! Even the muscle shakiness is almost gone. I can walk down a staircase without holding the rail. (Yes, walking down my basement stairs is one of the barometers I use for how well my body is doing. Can I walk down the stairs? Do I need to hold the railing, if so, am I just lightly touching it with one hand or clutching it with both hands for dear life? How do my legs feel as I go down? How well do I go back up? Can I go up normal or do I need my arms to pull me up using the railing?)
In "My Experience," I wrote:
. . . because of my awful looking colonoscopy pictures and positive reaction to the medications, Dr. Weber said he was officially diagnosing me with ulcerative colitis, despite the negative lab-test results. He said he had a few patients whose tests results were always negative. I think he was going by "if it looks like a duck, sounds like a duck . . ."
Well, Dr. Weber said something interesting at my latest follow-up visit. He said that although he had diagnosed me with ulcerative colitis, he is still not convinced that is my problem. He said that while my colon is definitely chewed up, it does not look like his other patients' colons who have UC. And there's all of my negative biopsy, stool, CT, and blood tests. I don't have the markers for Crohn's disease, either. What does this mean? It's not a duck? Haven't the slightest idea. The only thing I know is that my doctor is, and I don't get to use this word often, flummoxed!
So I’ve been diagnosed . . . sort of. I may be a duck! Or maybe a weird, mutated cross between a duck and some unknown beastly fowl. It just means, forward we go, grateful for the medicines that are working, and hopeful for finding a maintenance medicine that works better.
My body just gives doctors fits. (Sigh . . .)
Next Update: August 2022, Uh oh . . . This Isn't Good
Previous Update: June 2022: Some Progress
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