Anybody diagnosed with microscopic colitis?

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

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

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Profile picture for Kristi Motch @kristimotch

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.

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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

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Profile picture for mjgarr @mjgarr

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

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

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Profile picture for Kristi Motch @kristimotch

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.

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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.

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Profile picture for Kelly, Alumna Mentor @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.

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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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Profile picture for mjgarr @mjgarr

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

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I read a book by Wayne Persky - "Microscopic Colitis - What Really Causes Microscopic Colitis, Celiac Disease, and Other Autoimmune Diseases?" and it briefly mentions that early research showed the CC was frequently associated with connective tissue diseases, including RA (rheumatoid arthritis), and several other autoimmune diseases. Is it true? Don't know.

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Profile picture for shosh37 @shosh37

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?

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Constantly. If you saw me a year ago I had a body like a 20 year old, I am 66. Suddenly, my stomach looks like I am 8 months pregnant whether I eat or not. Nothing fits. I cry.

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Profile picture for shosh37 @shosh37

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?

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I went to Mayo for my first visit and have to go back to see 3 MDs in June. I have a history of CDIFF from antibiotics. I was on Avantin for a UTI, it's infusion. My stomach went down and a week later it was distended AGAIN

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Profile picture for Kristi Motch @kristimotch

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.

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I was diagnosed with Lymphocytic Colitis this past week following a sigmoidoscopy followed up by pathology findings. Today I started an 8-week regimen of Budesonide (generic for Entocort), 3MG once daily in the am. Have also altered my diet per many of the suggestions on this forum and in other places. Looking forward to more discussion on this issue and will report on my own progress.

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Profile picture for Kristi Motch @kristimotch

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.

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Please let us know what you changed in your diet? I know everyone is different but the more puzzle pieces we find might help one or more of us. Thanking you in advance.

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Profile picture for Kristi Motch @kristimotch

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.

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I am new to the group, too, and am seeking advice/information on Ulcerative Colitis. I am a 62 year old female, diagnosed with UC 2 years ago. I had been on oral mesalamine, which worked for 3 months until I developed acute pancreatitis (drug induced). Prior to that, I had been prescribed Canasa (suppositories), Uceris rectal foam, hydrocortisone (oral and rectal). GI doc is pushing ENTYVIO and I am terrified of possible side effects. I am still in relatively good health, never smoked, do not drink, eat a healthy diet and exercise regularly. I am waiting for an appointment with integrative medicine doctors to try acupuncture and herbal treatments like aloe vera and Boswellia? Has anyone been on Entyvio or tried more natural things for Colitis and have they helped? The biologics and their side effects scare the hell out of me! The fact that I developed pancreatitis from 4.8 G of mesalamine daily was frightening and GI doc said that was a rare side effect. This is a horrible debilitating disease and I just want my life back. I have had bloody diarrhea daily for almost 2 years, other than for the 3 months I was in remission on the mesalamine. I can barely maintain 110 pounds and rarely leave the house. Has anyone had good or bad results with their UC treatment? I also take a probiotic (VSL#3) that the GI doc recommended and I just started to take turmeric, as that is a natural anti-inflammatory. I am frustrated and confused. I understand that this is an autoimmune disorder and cases are increasing rapidly in developed countries. I have no family history of any type of Colitis and I have never smoked, which are both sometimes factors. Thank you so much for any insight or suggestions!

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