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

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Profile picture for carolyne @carolyne

I know exactly what you’re going through, please start the Budesonide, it may help until you can see the gastroenterologist. I suffered for 3 years before I was put on Entyvio. Make it clear to the doctor how much you are suffering.
All you want is your normal life back. I totally understand.

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So the entyvio works good…no side effects?

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Profile picture for lighthouseceliac @lighthouseceliac

So the entyvio works good…no side effects?

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Do you stay on entyvio indefinitely?

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Profile picture for lighthouseceliac @lighthouseceliac

So the entyvio works good…no side effects?

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I have no side affects from the Entyvio infusions other than I can’t seem to gain any weight. It took awhile for the infusions to start working, about the second infusion before the diarrhea was under control and about 4 months before the cramping stopped. Entyvio is a God sent for me, I feel normal again.
If you have any other questions about it please let me know.

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Profile picture for lighthouseceliac @lighthouseceliac

Do you stay on entyvio indefinitely?

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The gastroenterologist told me I would probably be on Entyvio for the rest of my life. I go to an infusion center every 8 weeks for the infusion, takes about 40 minutes. Small time out of my life to feel good 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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Thanks!! I am glad you are better. I bet that feels do freeing. It gives me something to hope for.

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Profile picture for andersj @andersj

DEFINITELY consult the work of Wayne Persky of Persky Farms. In addition to his books on MC he also started an excellent discussion group for people with MC: Microscopic Colitis Discussion and Support Board.
(I can't share the site address because I am a new member, but just search for Persky Farms Microcolitis Discussion Forum.) I have collagenous microscopic colitis, diagnosed after six months of constant night-and-day liquid diarrhea misery after one of the gastroenterologists I was consulting finally ordered a colonoscopy with biopsy. Sticking to a simple, bland diet (and drinking only filtered water) is crucial. MC is caused by inflammation. Food sensitivities we develop over time cause histamine hysteria in the gut. Things you used to eat are no longer tolerable. THE SIMPLER YOU MAKE YOUR DIET, THE FASTER YOUR RECOVERY. To stay in remission, you may find it best to eat just five foods every day – a meat, potatoes and a few more items. Food is medicine. I was eating fruit and vegetables to try to get over the illness until my family doctor told me I needed to be eating only Yukon Gold potatoes and bland, baked meat - organic chicken and pork tenderloin - stopped one of my worst flareups. Experts say animal protein is the key element for healing the gut, so aim to eat large servings of protein at each meal. The type of protein depends upon what you find that you can digest with no drama. Organic or free-range is best because it is most likely to not contain inflammatory elements. We lose the ability to digest large (normal) amounts of sugar while our intestines are inflamed, so if we eat large amounts, most of it will pass into our colon undigested, where it is fermented by bacteria, producing gas, bloating, cramps, and diarrhea. Once you have identified the few safe foods for you, stick to a bland, simple diet of only those foods. If you try to add variety, you may never get to remission. If you're still hungry, or if you need to take in more calories, just eat larger helpings of the foods you have found to be OK - causing no gut issues. When you are at your worst, a bare-bones diet that focuses on eating of clean proteins and hydration with water is the most helpful. Meat contains all the essential amino acids needed for good health. A lot of protein is needed to heal the gut. Budesonide and other medicines can treat the inflammation but they are not a cure and are generally only prescribed for a few months time (although recent studies show that a maintenance dose of 4.5 mg of Budesonide is well-tolerated by most people). Persky's book and the MC discussion board on the Persky Farms site give practical, simple advice on lifestyle adjustments and also get into the nitty gritty of the gut issues that cause all types of MC. Most of the advice I have shared here came from poring over all of the contributions on the Persky Farms site. Hang in there, everyone!

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Just got diagnosis from Colonoscopy with biopsy's
Lymphocytic Colitis.
Thank you for your post!

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Profile picture for lighthouseceliac @lighthouseceliac

Thanks!! I am glad you are better. I bet that feels do freeing. It gives me something to hope for.

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Please be persistent with your doctor and let them know how bad this gastric problem is making you feel. That is the only way you’re going to get what is needed for you to get better.
Keep me updated on how you are doing. I can totally relate as to how you’re feeling, been there !!!

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Profile picture for carolyne @carolyne

Please be persistent with your doctor and let them know how bad this gastric problem is making you feel. That is the only way you’re going to get what is needed for you to get better.
Keep me updated on how you are doing. I can totally relate as to how you’re feeling, been there !!!

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Thanks. I am and will continue to through the portal until I can finally see her in 2 months. I have developed migraines with nausea, is this something else I will just have to learn to live with?

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Profile picture for lighthouseceliac @lighthouseceliac

Thanks. I am and will continue to through the portal until I can finally see her in 2 months. I have developed migraines with nausea, is this something else I will just have to learn to live with?

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It sounds like you have more going on than the colitis. Take care and keep me posted.

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Profile picture for carolyne @carolyne

It sounds like you have more going on than the colitis. Take care and keep me posted.

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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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