Anybody diagnosed with microscopic colitis?
Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie
Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.
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I have been diagnosed with microscopic lymphocytic I colitis after 4 colonoscopies. I had gall bladder surgery 2015 and have had trouble with diarrhea since 2015.
@washalien - You have been sick for a long time- I know how that feels. Life passing by so fast. I had collagenous colitis initially and later on nondescript patches of inflammation throughout my GI tract. At first there was a trial of medication elimination, food elimination- no change. Budesonide was the best except for prednisone. By the way, I had breast cancer many years ago. I had severe intestinal reaction to chemo which finally was thought to have caused my chronic microscopic colitis. I decided to try immunosuppressive medication because I just could not live like I did. I was on it for several months and it worked. I got monitored monthly. I did have many infections, which is why I stopped it.
I’m happy it worked
It's an on-going journey I'm afraid to take the immunosuppressive meds because I've hd cancer twice, and figure it's a risk. For me, the budesonide made my skin so thin that it was tearing off when I'd just brush against something. I'm working with my current doctor on trying things for a few months. If we don't find any good answer, I'll probably go to the Mayo Clinic when the weather is better. Thanks for your reply. This group is clearly not very active --- too bad.
What seems to help? Meds or diet or a combination of both? What should be completely avoided? Any supplements that help? Thx
Hi @billie3, welcome to Mayo Clinic Connect and the Digestive Health group. You'll notice that I moved your message to this long-standing and active discussion group called "Colitis – Microscopic/Lymphocytic/Ulcerative." I did this so that you can meet other members who are living with colitis, like @washalien @petepat3234 @astaingegerdm @spectec @dval and @guener.
Click VIEW & REPLY to see the past posts.
You may also be interested in these discussions:
- Lymphocytic Colitis https://connect.mayoclinic.org/discussion/lymphocytic-colitis/
- Ulcerative colitis - worried about medications https://connect.mayoclinic.org/discussion/ulcerated-colitis/
Billie, do you have microscopic, lymphocytic or ulcerative colitis? Do you currently take any medications or avoid particular foods?
@billie3 - Do you know what type of colitis you have? Also, how long have you had it, what are the symptoms and are you taking medication now?
thank you for asking, Colleen. I was asking on behalf of an older (83) sister who isn't too techie (not that I am). She wouldn't know how to register/login or even find this wonderful Mayo Clinic Connect community. I will ask her if she knows what type of colitis she has. I do know that she had gall bladder surgery a few yrs ago and (from reading others' comments) that might have, unfortunately, been a cause for her horrible bouts of colitis.
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1 ReactionThank you for asking, Ingegerd. Pls see my reply to Colleen.
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1 ReactionI am waiting for the results of biopsies for microscopic colitis. Would like to hear about I can expect in regards to treatment and what I can expect long term . I am a 75 year old female.
Hi @turtlegalsandy, Welcome to Mayo Clinic Connect! You'll notice that I moved your message to this active discussion group called "Colitis – Microscopic/Lymphocytic/Ulcerative." The advantage to grouping these discussions is to help you meet members that have the same or similar conditions and can offer insight to what you can expect from this diagnosis. Can you tell us a little bit about your journey? When did you start displaying symptoms?