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 ndough @ndough

@annettam I’ve had microscopic colitis for more than 35 years but have never heard of bleeding being associated with it (doesn’t mean it’s not). However, maybe you should try to find out what the source of your bleeding is? Don’t think it’s from MC. Food-wise, I can’t eat anything with fiber when I’m in a flare up. Plain carbs will help stop it the fastest. Fiber supplements will only make it worse.

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@ndough I am not in the medical arena but always heard dark red means internally and bright red near entry like fissure or hemorrhoids. I could be wrong. Anyone out there know for sure?

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I have had NC for q8 years. Was on the steroid, Budesonide for 15. Helped but has side effects. Currently, trying the powder, Cholestyramine mixed with a half cup of Gatorade. Only been a week, but symptoms seem to have subsided. I never want to get back on steroids. I was supposed to wean off for 6 months, but instead I weaned myself off 1.5 mos to 3mg every other day. My GI didn't give me the entire instructions to wean off after 15 years. I went into adrenal crisis and almost died.

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Profile picture for donnagail @donnagail

I have had NC for q8 years. Was on the steroid, Budesonide for 15. Helped but has side effects. Currently, trying the powder, Cholestyramine mixed with a half cup of Gatorade. Only been a week, but symptoms seem to have subsided. I never want to get back on steroids. I was supposed to wean off for 6 months, but instead I weaned myself off 1.5 mos to 3mg every other day. My GI didn't give me the entire instructions to wean off after 15 years. I went into adrenal crisis and almost died.

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@donnagail I had MC for 18 years. I should have spell checked before sending.

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Profile picture for donnagail @donnagail

I have had NC for q8 years. Was on the steroid, Budesonide for 15. Helped but has side effects. Currently, trying the powder, Cholestyramine mixed with a half cup of Gatorade. Only been a week, but symptoms seem to have subsided. I never want to get back on steroids. I was supposed to wean off for 6 months, but instead I weaned myself off 1.5 mos to 3mg every other day. My GI didn't give me the entire instructions to wean off after 15 years. I went into adrenal crisis and almost died.

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@donnagail I remember my Dr had me taking Cholestryramine for years when I first developed MC, more than 35 years ago. It was extremely effective for me, however I can’t take it now because I take thyroid med, blood thinners and who knows what else that doesn’t play nice with it. Not ever going on steroids though.

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Profile picture for donnagail @donnagail

@ndough I am not in the medical arena but always heard dark red means internally and bright red near entry like fissure or hemorrhoids. I could be wrong. Anyone out there know for sure?

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@donnagail kinda sorta. Dark red means small intestine, and bright red large intestines. If it’s really fresh, then yeah…most likely hemorrhoids. I see that happen to me after I come down from a long MC attack and have my first regular bowel movement. You should always check with your doctor though. Always.

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I am 92 years and and according to my dr. have MC after taking celebrex for many years. All my stool samples have been negative I am scheduled for a colostomy this month. I have been careful with what I eat I have lost 15-20lbs now weigh 120 lbs. Chicken, port fish are ok and well cooked vegetables. I can even sometimes eat a small peeled apple. If I am stressed and not careful I will have liquid stools and urgency. This is all new to me and I can only take tylenol pain not any nsaids, if I do all they symptoms of MC return in full and I am miserable.

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Why are you having a colostomy?

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Profile picture for ndough @ndough

@donnagail I remember my Dr had me taking Cholestryramine for years when I first developed MC, more than 35 years ago. It was extremely effective for me, however I can’t take it now because I take thyroid med, blood thinners and who knows what else that doesn’t play nice with it. Not ever going on steroids though.

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@ndough I have hypothyroidism and take meds. I read where I have to take it outside a 4 hour windows so yesterday I took my thyroid med around 6am and the rest of my over the counter vitamins and probiotics a couple hours later and took the Cholestyramine before bedtime so it doesn't interfere. I hope the timing works. I still had to take two imodiums today so I could go skiing. I did ok on the slopes. Hope I have another good day tomorrow.

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Profile picture for margaretamelia @margaretamelia

I am 92 years and and according to my dr. have MC after taking celebrex for many years. All my stool samples have been negative I am scheduled for a colostomy this month. I have been careful with what I eat I have lost 15-20lbs now weigh 120 lbs. Chicken, port fish are ok and well cooked vegetables. I can even sometimes eat a small peeled apple. If I am stressed and not careful I will have liquid stools and urgency. This is all new to me and I can only take tylenol pain not any nsaids, if I do all they symptoms of MC return in full and I am miserable.

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@margaretamelia I would ask the same thing. Why a colostomy? You have just been diagnosed. Your doctor is going straight to surgery without suggesting other options? That sounds like someone knife happy. Maybe you should get a second opinion.

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It was my primary doctor that said by my symptoms MC it is probably caused by long term use of Celebrex. Last time and only time I had a colonoscopy was 45 years ago. The doctor is not planning on surgery but only a colonoscopy for a accurate diagnosis. I am sorry did I type colostomy. Better check before I send. Sorry, my error.

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