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kristimotch

microscopic colitis

Posted by @kristimotch in Digestive Health, Jun 1, 2012

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

marymar

Posted by @marymar, Oct 18, 2012

Kristi, I was diagnosed about 4 months ago with Lymphocytic colitis after weeks of discomfort. I was able to get it under control with probiotics, decreasing my caffeine intake and watching what I ate. Another doctor recently put me on antibiotics for another problem and now the colitis has flared up again. Like you, I am new to this, and would appreciate any help others have to offer.

ekoltun6

Posted by @ekoltun6, Nov 14, 2012

My mother suffers from microscopic colitis. I recently found an online forum,
perskyfarms.com, that I find has a lot of information for people who have microscopic colitis.

mjgarr

Posted by @mjgarr, Aug 24, 2016

I have MC. Drs. are saying it might be caused by an Autoimmune condition. Does anyone know about this.

kristimotch

Posted by @kristimotch, Aug 31, 2016

It would seem that there is an autoimmune component. Many people who have MC also have thyroid autoimmune issues. I would recommend that you visit perskyfarms.com The website is devoted to people with MC. I have found the information posted by users at this site really helpful. I was diagnosed with MC in 2012 and have lived mostly symptom free after making a few small changes to my diet.

shosh37

Posted by @shosh37, Aug 31, 2016

Hi @kristimotch 🙂 what diet changes did you make?
And did you have terrible Distention??
I got my MC in remission from taking Lialda (as in i dont have the violent Diarrhea today) but the distention is still awful... and i am just not sure the distention is completely related to the MC.. Thanks!!

kristimotch

Posted by @kristimotch, Aug 31, 2016

Hi shosh37,
Hi completely gave up on eggs and egg based foods like mayo. I eat very little gluten, unlike many with MC, I can tolerate some gluten. I also very rarely drink or eat any dairy products though I can tolerate hard cheese most of the time. I also take a really good vitamin supplement everyday and calcium/magnesium. I frequently had gas and distention which I know is miserable. I still get this from time to time-rarely- and it is usually diet related.
Again I would recommend that you visit and join perskyfarms.com, It seems to me that those of us with MC have so many varying degrees/problems with food/digestion etc. It was really good for me to read about the experiences of many of those on the website. You can also ask questions and will get a ton of feedback. I found many suggestions useful, many were not.

mkzpony

Posted by @mkzpony, Nov 30, 2016

I have Thyroid, Celiac as well as MC, so YES

colleenyoung

Posted by @colleenyoung, Aug 25, 2016

Welcome to Connect, @mjgarr. I moved your message to this existing discussion about microscopic colitis in the Digestive Health group so that you can meet other members talking about MC. According to this article from Mayo Clinic, autoimmune diseases such as rheumatoid arthritis or celiac disease may cause microscopic colitis http://mayocl.in/2bmyFqr Here's additional information from the National Institute of Health https://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/microscopic-colitis/Pages/facts.aspx

Do you also have an autoimmune condition?

mjgarr

Posted by @mjgarr, Aug 26, 2016

I don't know. I know I have Mast Cell. My nose runs all of the time. It never did that until I started having signs of MC.

shosh37

Posted by @shosh37, Aug 30, 2016

Hi all! I have collagenous colitis. Found out 3 months ago. I am suffering with distention daily. After I eat I get distended and I also have PFD. My colitis is in remission right now but I still have distention!! I can't wear jeans. I have fatigue. Also no period in 2 years and I'm 33. I'm seeing a reproductive endocrinologist next month to see if this is auto immune related etc .... Been dealing with this for so long! Anyone have similar distention?

nategilbraith

Posted by @nategilbraith, Aug 30, 2016

Hi @shosh37, welcome to Connect! Distension can be very frustrating to deal with especially when you don’t know the cause. I see you already connected with @cdicicco in another discussion. I’d also like to introduce you to other members who might be able to shed some light by sharing their experiences.

Please meet:
- @gloriaeb, @luladavis, @uneeq1, @upnorthnancy, @nicole14 and others who are talking in the discussion called - I am a relatively healthy person with a problem "bloated belly" http://mayocl.in/2biTqQF
- @jgirlatlaw who started the discussion Mystery Abdominal Distention http://mayocl.in/2bGTavb

Shosh - We'll be interested in hearing what you find out at your appointment with the reproductive endocrinologist. @mjgarr was also asking if there is an autoimmune connection to colitis. What do you do to relieve the distention?

mkenn

Posted by @mkenn, Aug 31, 2016

If you have been diagnosed with IBS, I believe you may have fructose intolerance/malabsorption. Eliminate carbs and sugars for a month and see how your belly goes down and you feel better.

shosh37

Posted by @shosh37, Aug 31, 2016

I've had Ibs my entire life. Most constipation.I've done the fodmap diet and it helped 1.5 years ago when this all started and I was diagnosed with sibo. Then I took an antibiotic called augmenten and after the antibiotic this all started. And the distention never stopped. I went to mayo for a pelvic floor dysfunction biofeedback treatment. It helped my BMs but I still have distention almost a year later!!!!! The new colitis diagnosis may have something to do with it. Sooooo confusing !!!

nategilbraith

Posted by @nategilbraith, Aug 31, 2016

Hi @mkenn, I moved your message to this existing discussion, as I believe you were responding to @shosh37 about her abdominal distension. I want to ensure she saw your reply.
- Shosh, have you had any issues with IBS in the past?
- @mjgarr you mention having mast cells. Here's some information about mast cells http://www.mastcellaware.com/mast-cells/about-mast-cells.html

What changes have any of you made to your diet since being diagnosed?

shosh37

Posted by @shosh37, Aug 31, 2016

Thanks guys! This is great. I had Ibs forever!! This is completely different then my Ibs. I wish I had my Ibs over this distention

ekoltun6

Posted by @ekoltun6, Aug 31, 2016

My 91 year old mother was diagnosed with microscopic colitis 20+ years ago. For the past 28 years she had very severe food intolerances, ie milk, gluten, beef, most processed foods and more. Her diet was severely limited. 1 1/2 years ago my mom was put on Asacol by a new gastroenterologist, when she was hospitalized for open heart surgery. Since then she can eat many more foods that she previously couldn't eat. The quality of her life improved tremendously now that her food intake increased. She still is a bit of a picky eater but thanks to the Asacol and the many foods she can now eat, ie. Regular bread, beef, cake, cookies cheese and much more, the quality of her life has improved.

nategilbraith

Posted by @nategilbraith, Sep 1, 2016

Welcome back to Connect @kristimotch and @ekoltun6! You'll notice that Connect has a new design and a lot more activity since you last were here. Coming back and sharing your updates and experience about managing microscopic colitis with diet is so valuable for newer members. Thank you!

@kristimotch What vitamin supplement are you taking? Did your doctor recommend it?
@ekoltun6 that is a remarkable turn around for your mother, which I'm sure is an incredible relief to you. I hope you can keep up with her 🙂

Have either of you, in managing MC, experienced the distention or bloated stomach that @shosh37 is experiencing?

ekoltun6

Posted by @ekoltun6, Sep 2, 2016

My mother's MC did not manifest with abdominal bloating, rather she
frequently had diarrhea after eating many foods. Severe diet restriction
was the only way she could control diarrhea. Once she was put on Asacol,
diarrhea stopped and she could start eating many foods that used to give
her diarrhea.

mkzpony

Posted by @mkzpony, Nov 30, 2016

I was diagnosed with CELIAC 6 years ago, to follow MC, I have been prescribed Budesinide, of which the cost in the USA is $1050.00/3 months, I sent my prescription to Canada, now I pay only $95.00 for 3 months, and it is working awesome!!!!!!!!!!!!!!!!!!!1

kdubois

Posted by @kdubois, Dec 1, 2016

I'm tagging in to follow this post. I had a CT scan for something else a few weeks ago, and the scan also found diffuse thickening of the colon wall with the suspicion of colitis. All lab tests, like C Diff, came back negative, and I actually just had my colonoscopy today. My doctor said that the inflammation wasn't visually-apparent today (even though it was at Mayo last January though those biopsies returned negative). Now I'm just waiting for the pathology to return.

shirleyfoggepiazza

Posted by @shirleyfoggepiazza, Dec 2, 2016

You are very lucky to have a negative CDIFF. I am a 9 year recurrent sufferer, had TOXIC MEGA COLON AS MY FIRST CDIFF DUE TO THE ERROR OF IDS INFUSING ME UNNECESSARILY WITH ANTIBIOTICS. I TOLD THEM I WOUKD GET CDIFF. TGE WEEK OF MY DAUGHTERS WEDDING, TOXIC MEGA COLON. AVOID FLORIDA MDS.

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