Colitis – Microscopic/Lymphocytic/Ulcerative

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.

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?

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@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?

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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.

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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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@mjgarr

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

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

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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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@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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@mjgarr

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

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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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@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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@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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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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@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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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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I'm puzzled by one aspect of the current medication my GI doc has prescribed for Lymphocytic Colitis. I'm on budesonide 3mg daily for 8 weeks. Yet, the studies and online discussions I've seen regarding budesonide treatment for LC seem to indicate the normal prescription is 9mg daily for the same time period. I'm planning to raise this question on my next visit, but just curious if anyone has been prescribed a dosage this small for this condition.

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How long does Budesonide take to before normal BM?

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My husband took budesonide for seven weeks before feeling any relief; he is still taking this drug now going 15 weeks his Dr. will begin weaning him off the medication soon. Who knows what happens after that. It’s been very hard.

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