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Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis
Inflammatory Bowel Disease (IBD) | Last Active: Sep 8 5:49pm | Replies (190)Comment receiving replies
I was diagnosed with lymphacytic colitis over two years ago,have had four rounds of Budesimide,3 months each,with 9mg,6 mg,and 3 mg.i started having side effects ,weakness, thinning skin and petechaie on my arms,I have been off of it for a month,taking Colesevelam 625 mg,2 twice a day which is doing nothing for my diarrhea,my GI doc ordered Xifaxan which the insurance did not approve. My Dr said I was on the lowest dosage of Budesimide,he has never ordered any bloodwork,I am having a cat scan next Wednesday.Any advice or new ideas out there?
Replies to "I was diagnosed with lymphacytic colitis over two years ago,have had four rounds of Budesimide,3 months..."
Hello boy4,
I think Lymphocytic colitis and microscopic colitis are either the same or similar types of colitis which are diagnosed by biopsies taken during colonoscopy. I too was diagnosed 2 years ago and have been on 3 mg of Budesonide daily since then (no stopping). I too have noticed purple splotches on my arms that come and go. They look like bruises but do not hurt at all. I also have thinning skin that tears easily, lots of bandaids! My blood count tests show no evidence of anemia or side effects of the "bruises" which are not really bruises.
The Budesonide is working quite well for my diarrhea. I used to have 6-10 episodes of diarrhea a day, now I usually have 1 BM each day, a #4 on the Bristol scale which is fine with me!
I would rather have purple patches on my arms than diarrhea and wish you well in your recovery.
Margot
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Hi, @boy4. I wanted to let you know I moved your post here so you could return to this discussion you started before and talk with members such as @joanthompson @pb50 and others:
- Is anyone dealing with lymphocytic colitis? https://connect.mayoclinic.org/discussion/is-anyone-dealing-with-lymphocytic-colitis/?pg=3
It sounded like you thought that bloodwork might be useful. Wondering if you have already or will be asking your doctor about doing bloodwork? Will you be taking another antidiarrheal over the counter or taking to your doctor about prescribing something else for this issue? If so, what will you be taking next?