Hi everyone,
I'm so glad to have found this site. I was diagnosed with microscopic colitis (specifically collagenous colitis) two weeks ago after a colonoscopy with biopsies specifically to look for MC. It took going to four different doctors to find a gastroenterologist who recognized my problem. I've been trapped at home for six months because I can't be more than a few steps away from a bathroom. I've been working from home for the past year due to the pandemic, so that's the only good thing I can say about COVID's effect on my life.
It took only 15 minutes for my doctor to suspect MC and tell me he had to do a colonoscopy with biopsies to know for sure. He also pretty much begged me to not touch gluten or dairy. So I'm hopeful I've found someone who can help me. I started 9 mg budesonide 8 days ago and the symptoms have improved significantly. My concern is what happens when I go off. I've read on this site that people recommend coming off the steroid very slowly, so I'm going to ask the doctor to let me do that - and push for it if necessary. I'm also meeting with a naturopath next week to help me with the malabsorption issues and to start preparing for coming off the steroid through diet changes that exceed what I've been doing for several years.
I have Hashimoto's (take 75 mcg Tirosint for it) and psoriasis (controlled with diet). I've been pretty much gluten, dairy, and egg free for about four years, but then felt so much better that I started eating dairy again and the occasional gluten. I think I triggered the MC by doing that. I'm pretty much beating myself up over that poor decision.
I've also been wondering about the COVID vaccine. I've been hesitant to take it while in the midst of the MC symptoms, but I read that several members on this site took it and did OK. I don't take the flu vaccines and never get the flu, but am feeling a big differently about COVID. I just don't want to stir things up in my body more so than they already are right now.
I want to get some semblance of my life back, but am wondering how I should approach planning going forward. Or is planning something I can even do? I was supposed to travel from Atlanta to New Orleans in June for a conference, but just canceled it. I can't see myself getting on a plane or even traveling a significant distance by car. Are people with MC ever able to travel again? Even when in remission, can a relapse happen so suddenly that I might find myself in a terrible situation far from home?
Thank you for any guidance you can give me. I hope to be able to help others on this site one day - after I make progress.
Myrna
Newbie Introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Newbie Introduction
Hello Myrna,
It sounds as though your doctor may be among the few gastroenterologists who actually understand microscopic colitis.
Personally,I didn't have any noticeable reaction to either of the Pfizer vaccines. But apparently, a stronger reaction indicates a stronger Immune system response which should correlate with a better immunity to the virus. It also might indicate that you've already had the virus. So far as I'm aware, it hasn't triggered any MC reactions for any members here. By comparison, members here who have caught the virus have had to deal with an MC relapse in every case, and the relapse has been extremely difficult to resolve.
If you correct your diet to eliminate all the foods that cause your immune system to produce antibodies, and remain faithful to the diet after you reach remission, then after you heal for a while, you should be able to travel without worry. Whenever possible, if you take your own food when you travel, you can eliminate most of the risk of a reaction or a relapse. We have a number of members here who do a lot of traveling as part of their job, and they have learned how to plan each trip so that they don't run into any unexpected problems. There is a section devoted specifically to traveling with microscopic colitis. You'll find it here .
I hope this helps. Again welcome aboard, and please feel free to ask anything.
Tex
It sounds as though your doctor may be among the few gastroenterologists who actually understand microscopic colitis.
Personally,I didn't have any noticeable reaction to either of the Pfizer vaccines. But apparently, a stronger reaction indicates a stronger Immune system response which should correlate with a better immunity to the virus. It also might indicate that you've already had the virus. So far as I'm aware, it hasn't triggered any MC reactions for any members here. By comparison, members here who have caught the virus have had to deal with an MC relapse in every case, and the relapse has been extremely difficult to resolve.
If you correct your diet to eliminate all the foods that cause your immune system to produce antibodies, and remain faithful to the diet after you reach remission, then after you heal for a while, you should be able to travel without worry. Whenever possible, if you take your own food when you travel, you can eliminate most of the risk of a reaction or a relapse. We have a number of members here who do a lot of traveling as part of their job, and they have learned how to plan each trip so that they don't run into any unexpected problems. There is a section devoted specifically to traveling with microscopic colitis. You'll find it here .
I hope this helps. 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.
Re: Newbie Introduction
Tex, many thanks for pointing me to the Travel forum. I just finished reading all the posts and am encouraged.
Also, I purchased your book and finished it last night. It helps so much to have a better understanding of what I'm dealing with.
Myrna
Also, I purchased your book and finished it last night. It helps so much to have a better understanding of what I'm dealing with.
Myrna