I am looking for others diagnosed with microscopic colitis

Posted by Kristi Motch @kristimotch, 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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

@mjgarr

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

Jump to this post

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.

REPLY
@mjgarr

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

Jump to this post

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!!

REPLY
@mjgarr

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

Jump to this post

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.

REPLY

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.

REPLY

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?

REPLY
@nategilbraith

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?

Jump to this post

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

REPLY

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

REPLY
@mjgarr

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

Jump to this post

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

REPLY

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.

REPLY
@kdubois

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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.