I apologize if this may have already been discussed at some point, but I was diagnosed with lymphocytic colitis four years ago on colonoscopy biopsy. I tried Pepto Bismol, Budesonide, Cholestyramine, Xifaxan, and Prednisone, none of which really made that much of an improvement but did notice a slight improvement about 1.5 years into the disease some time after the Prednisone. I was off medication for almost two years and still struggling with symptoms (though not as severe as the beginning). So my new doctor decided to do another colonoscopy with biopsy which now shows collagenous colitis. This is definitely not was I was expecting, as I was not aware that anyone could have both of these at different times. However, I did notice in an article that research suggests that both lymphocytic and collagenous colitis may just be different stages of the same disease (microscopic colitis). This certainly seems to be possible in my case, and maybe for others as well except that most people may not know it if they didn't have two colonoscopies at the times each condition was present.
Has anyone else been diagnosed with both of these conditions at different times? I have started taking Budesonide again for the collagenous colitis, which seems to be working better than when it did for the lymphocytic colitis (I was previously on it for six months with no success). But I am still not "better" since it got worse once I started weaning after one month. Back on the high dose now.
Having both Lymphocytic and Collagenous Colitis
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Having both Lymphocytic and Collagenous Colitis
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
Re: Having both Lymphocytic and Collagenous Colitis
Hello Sarah,
Welcome to the group. After a patient has had LC for a while, it's common for the symptoms that are diagnostic for CC to develop, as the collagen layers in the intestinal wall thicken. In those cases, what the disease is called typically depends on the diagnosing doctor, and his or her preferences. CC is simply a more mature form of LC, but it's still the same disease, with the same clinical symptoms (although the lab symptoms change somewhat), and the same treatment. The lymphocytic infiltration into the epithelial layer of the intestine is still present. Many doctors just call it microscopic colitis (MC), and that's how I prefer to refer to it.
Published medical research shows that not all MC patients respond to budesonide, but of those who do, 85% relapse when the treatment is ended. Additional research shows that each time a budesonide treatment is stopped and restarted, it becomes less effective for that patient, until eventually, it loses all of its effectiveness. If you want to control all your clinical symptoms, you will have to change your diet similar to the way the rest of us have done in order to put the disease in remission.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. After a patient has had LC for a while, it's common for the symptoms that are diagnostic for CC to develop, as the collagen layers in the intestinal wall thicken. In those cases, what the disease is called typically depends on the diagnosing doctor, and his or her preferences. CC is simply a more mature form of LC, but it's still the same disease, with the same clinical symptoms (although the lab symptoms change somewhat), and the same treatment. The lymphocytic infiltration into the epithelial layer of the intestine is still present. Many doctors just call it microscopic colitis (MC), and that's how I prefer to refer to it.
Published medical research shows that not all MC patients respond to budesonide, but of those who do, 85% relapse when the treatment is ended. Additional research shows that each time a budesonide treatment is stopped and restarted, it becomes less effective for that patient, until eventually, it loses all of its effectiveness. If you want to control all your clinical symptoms, you will have to change your diet similar to the way the rest of us have done in order to put the disease in remission.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.