1. < Inflammatory Bowel Disease (IBD)
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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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carolyne | @carolyne | Oct 19, 2022
In reply to @lighthouseceliac "I am on the budesonide now. I don’t like the side effects, but it is helping..." + (show)
Profile picture for lighthouseceliac @lighthouseceliac

I am on the budesonide now. I don’t like the side effects, but it is helping some symptoms. It sounds like this med is not really going to heal anything. Have you tried the bile acid binders….however you say that. It has been suggested. Is hope for any remission even sane or should I just accept and get used to how life is now. I wonder about the monoclonal antibody…infusions I think? My medical care is so ineffective, I am so disappointed in how the Mayo in AZ has handled me.
So many questions and so frustrating to say the least I have such sympathy for ones who have it so much worse with gut issues. Celiac Hashimotos and LC are just about too much to get a grasp on.

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I am on Entyvio infusions, every 8 weeks, and it has made a world of difference in how I feel, almost normal. I asked my doctor how long I was going to need the infusions, he said for the rest of my life. It’s a small amount of time out of my life to feel good again. INFUSIONS WORK !!!!
Hang in there and don’t give up on searching for relief.
I know what you’re going through. Sometimes you need someone who understands and I do relate and understand.
Carol 👋

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lighthouseceliac | @lighthouseceliac | Oct 19, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
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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Thank you so very much.

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andersj | @andersj | Oct 21, 2022
In reply to @lighthouseceliac "I am on the budesonide now. I don’t like the side effects, but it is helping..." + (show)
Profile picture for lighthouseceliac @lighthouseceliac

I am on the budesonide now. I don’t like the side effects, but it is helping some symptoms. It sounds like this med is not really going to heal anything. Have you tried the bile acid binders….however you say that. It has been suggested. Is hope for any remission even sane or should I just accept and get used to how life is now. I wonder about the monoclonal antibody…infusions I think? My medical care is so ineffective, I am so disappointed in how the Mayo in AZ has handled me.
So many questions and so frustrating to say the least I have such sympathy for ones who have it so much worse with gut issues. Celiac Hashimotos and LC are just about too much to get a grasp on.

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Cholestyramine is effective for most MC sufferers with bile acid malabsorption and it can be taken in concert with budesonide. It is by far the most-often-recommended aid to bile problems in MC patients and is definitely recommended for use prior to turning to trying the "biological" medicines such as Entyvio, which do not have as good a track record for effectiveness to this point according to early research.

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lighthouseceliac | @lighthouseceliac | Oct 21, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
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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Strange timing. I was just writing Dr. Harris about getting on that.
Thanks for your help.

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lighthouseceliac | @lighthouseceliac | Oct 21, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
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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What are concerns or side effects with Cholestyramine.

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cathy5920 | @cathy5920 | Oct 22, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
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.

Jump to this post

Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem to have both IBS and MC. Awful combo. I tried colestyramine, but it didn't make much difference in my constant runs. The steroid, Bud...helped firm my stools a tad, but the side effects were intolerable. If I eat anything with fiber, I get pain and bloating to add to my five to seven daily watery stools. So no fruits and vegetables. And I used to be a vegan! Thank goodness I am not gluten or lactose intolerant. I consume lots of dairy and lots of white stuff. I was trying to take two Imodium twice a day, which helped lessen the frequency of my runs, but my heart started going into arrhythmia. I spent 12 awful 0years with atrial fib, and I don't want to go there again. So gulping down Pepto-Bismol seems to be the only thing that slows things down a bit. Anyone else find help for these constant watery stools?

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3 replies
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carolyne | @carolyne | Oct 23, 2022
In reply to @cathy5920 "Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem..." + (show)
Profile picture for cathy5920 @cathy5920

Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem to have both IBS and MC. Awful combo. I tried colestyramine, but it didn't make much difference in my constant runs. The steroid, Bud...helped firm my stools a tad, but the side effects were intolerable. If I eat anything with fiber, I get pain and bloating to add to my five to seven daily watery stools. So no fruits and vegetables. And I used to be a vegan! Thank goodness I am not gluten or lactose intolerant. I consume lots of dairy and lots of white stuff. I was trying to take two Imodium twice a day, which helped lessen the frequency of my runs, but my heart started going into arrhythmia. I spent 12 awful 0years with atrial fib, and I don't want to go there again. So gulping down Pepto-Bismol seems to be the only thing that slows things down a bit. Anyone else find help for these constant watery stools?

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Hi Cathy,
Sorry to hear you’re suffering with MC. I have collagenous colitis which is similar to MC.
I was prescribed all the traditional meds, none controlled my symptoms. I am now on Entyvio infusions every 8 weeks and I feel much better with no symptoms or side affects, just can’t gain any weight.
I hope this information helps.
I can totally emphasize with what you’re going through.

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kitty2 | @kitty2 | Oct 23, 2022
In reply to @cathy5920 "Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem..." + (show)
Profile picture for cathy5920 @cathy5920

Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem to have both IBS and MC. Awful combo. I tried colestyramine, but it didn't make much difference in my constant runs. The steroid, Bud...helped firm my stools a tad, but the side effects were intolerable. If I eat anything with fiber, I get pain and bloating to add to my five to seven daily watery stools. So no fruits and vegetables. And I used to be a vegan! Thank goodness I am not gluten or lactose intolerant. I consume lots of dairy and lots of white stuff. I was trying to take two Imodium twice a day, which helped lessen the frequency of my runs, but my heart started going into arrhythmia. I spent 12 awful 0years with atrial fib, and I don't want to go there again. So gulping down Pepto-Bismol seems to be the only thing that slows things down a bit. Anyone else find help for these constant watery stools?

Jump to this post

Hi..I had a lot of problems with immodium and mesalamine products..I passed out at work and made my colitis and bleeding much worse. My previous physician told me to take 2 immodium at a time four times a day..lots of side effects. Even the pharmacists at walgreens were concerned about the high dose for my age and size. I am seventy. I am off of those drugs and doing somewhat better. Hope you start feeling better. This is a journey, and not a pleasant one. Sincerely, Kitty2

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levina | @levina | Oct 23, 2022
In reply to @cathy5920 "Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem..." + (show)
Profile picture for cathy5920 @cathy5920

Yay! I've been waiting to see if anyone on here can relate to MC issues.I seem to have both IBS and MC. Awful combo. I tried colestyramine, but it didn't make much difference in my constant runs. The steroid, Bud...helped firm my stools a tad, but the side effects were intolerable. If I eat anything with fiber, I get pain and bloating to add to my five to seven daily watery stools. So no fruits and vegetables. And I used to be a vegan! Thank goodness I am not gluten or lactose intolerant. I consume lots of dairy and lots of white stuff. I was trying to take two Imodium twice a day, which helped lessen the frequency of my runs, but my heart started going into arrhythmia. I spent 12 awful 0years with atrial fib, and I don't want to go there again. So gulping down Pepto-Bismol seems to be the only thing that slows things down a bit. Anyone else find help for these constant watery stools?

Jump to this post

I am newly diagnosed with MC . I have been keeping a food journal.It is all trial and error.
I thought of seeing a nutritionist, but it’s so expensive. I have been googling all my foods. I also take Budesonide . It has helped,but not something I want to take long term because of my A- fib. I’m seeing my Dr Tuesday. I will pass along any new information I get from her. Good luck.

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luannr | @luannr | Oct 25, 2022
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
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.

Jump to this post

I have IBS-D and MC. It is trial and error! Yes, keep a good journal. I was on a FODMAP diet under a nutritionist. I lost weight, did not feel well and still had bowel problems. Since then I have severely restricted fruits to bananas and a little pineapple. I eat no fried foods and if I do I have a reaction. I am on cholestyramine 4 gram once a day and use Imodium if needed. Keep hydrated! Be vigilant to what you eat.

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