Katie and Linda,
Many/most of us have some degree of lymphocytic infiltration into the mucosal lining of our digestive tract from one end to the other. In most cases however, the clinician fails to attribute any significance to that, so she or he doesn't even mention it and the patient is often unaware of it. I have no colon, and yet I have the same symptoms as most others here if I slip up on my diet. Obviously the disease is incorrectly described in the literature.
Regardless of the pattern of inflammation, budesonide is virtually always the optimum med for MC. Note that Uceris is not activated until it reaches the end of the transverse colon or the sigmoid colon (because it's targeted at UC), and yet users report that it typically gives good results for MC (with minimal side effects). If you want to treat the entire GI tract (with an anti-inflammatory med), then theoretically at least, prednisone is the optimum choice for that, but I would be surprised if your results would be any better than taking a full dose of budesonide.
Quite a few of us have been found to have lymphocytic gastritis (or some variation of that nomenchature). It's simply MC in the stomach, but physicians can't call it that, because by definition (colitis) MC can only exist in the colon.
In most cases, gastroenterologists haven't even bothered to take note of the condition when it's present elsewhere in the GI tract, once they find the diagnostic markers of MC in the colon.
Katie wrote:Third - when people have lymphocytes in their small bowel do they also have villi blunting? I don't think my Doc mentioned this about my last biopsy, but only that I had lymphocytes.
You apparently missed this in my next-to-last post:
Koskela (2011) even noted that in general, the duodenum of patients with MC, excluding any patients who have celiac disease, have shorter villi than controls.19
But again, clinicians will almost never mention this to a patient, because they don't know what it means (since by definition, MC cannot exist in the small intestine, and these patients do not qualify for a celiac diagnosis). To their doctors, it appears to be a symptom without a disease, so it cannot exist.
Katie wrote:Fourth - has anyone had to be hospitalized with a feeding tube? I'm worried that this is the direction I am heading.
Yes, but it's very rare. Sometimes it resolves the symptoms, sometimes it does not. The problem is that those formulations contain many ingredients and they are manufactured by pharmaceutical companies.
Katie wrote:I swear this disease gets NO RESPECT!! I mean, ulcerative colitis sucks and all but it only affects the terminal ileum and colon.... whereas my whole gi tract is affected! Why aren't there more people researching this huh??
You're right of course, but researchers have to eat, so their research depends on funding. The lion's share of research funding comes from the pharmaceutical companies. You will note that there is not a single drug on the market labeled for MC. And that will continue as long as the pharmaceutical companies view the disease as devoid of any big profit opportunities.
Because the drug companies are not likely to ever fund MC research, we founded the Microscopic Colitis Foundation a year ago with the mission of promoting public awareness and the hope of someday being able to sponsor research directed at finding better treatment programs for MC. But so far, finding people outside of the membership of this forum who are willing to contribute to the cause is like searching for the Holy Grail. Apparently people who have money to spare either don't get MC or they trust their doctors implicitly (or maybe they're throwing all their money at politicians these days), but whatever the case, trying to get some funds together to sponsor research to benefit patients who have the disease is an exercise in futility.
And I agree that it's mighty frustrating how so many people can throw millions of dollars at Crohn's and UC research, and throw kazillions of dollars at political campaigns (which is money down a rathole for sure), but MC gets no respect (and consequently no funding).
Tex
