I am looking for others diagnosed with microscopic colitis

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.

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@grannydee

This is interesting…gastro dr recommended 2 Zenpep (40,000) with each meal, equaling 6 per day. It gave me fibrosing colonopathy and I was in agony with the cramping and diarrhea.
I stopped after the worst episode last Friday. Started over with the Zenpep ONCE before my evening meal. So far, so good!
The recommended dosage was WAY too strong is my best guess. I have a follow up appointment in 5 days and am curious to see what my dr has to say. I was diagnosed as having moderate to severe EPI and that I needed a strong dose to be able to digest my nutrition.
The weight loss continued and now I am down to 104. I’m only 62 inches tall and there is NO way I’m taking the recommended dose!
Anyone else had a similar experience?
I can live with the smaller dosage, but I can’t live with the agonizing cramping and diarrhea with the recommended dosage.

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ZenPep did not work for me. I tried several weeks on Creon With samples given to me by my doctor. Now I have a prescription for Creon, and will try it for several months. Initially, it seemed to help a lot. I have EPI found after taking a GiMap test. My amalyse level was 33 and my lipase and protease were also extremely low.
I hope the Creon is part of the MC solution, the Creon should definitely improve my ability to digest and derive the nutrients I need from my very very limited diet.

Wayne Pesky’s book and the blog are helpful and offer deep insight into MC.

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@fdixon63

I have a very long history of symptoms like colitis. I had a colonoscopy six months ago and biopsies revealed collagenous colitis. I was prescribed budesonide for three months--reducing the amount every month until finished. It made a huge difference in my ?diarrhea-type episodes, consistency of BM's... I was thrilled. It has been about 2 1/2 months since I finished the budesonide. I still have the occasional "flares" which depend on what I eat but overall the urgency is much less. Changing doctors is what has helped the most.

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Great, Budesonide worked on me for awhile then all my symptoms returned, even worse. Hopefully yours will stay in remission. I am troubled now by cramping and crippling fatigue. It could be due to the infusion therapy, not sure. Anyway, I just continue to forge ahead, don't know what else to do.

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@longslowprogress

Unless someone has actually lived with microscopic colitis, they have absolutely no concept of or appreciation for the impact of this condition has on ones life. I have had it for 23 years. Budesonide could only be taken for 9 weeks. I would have thought once the inflammation was “healed” My elimination would have returned to normal. But even with rigid and strict dietary changes, I am back to full blown MC daily and nightly. Have tried the Budesonide route twice over a period of years and am considering it again, but very hesitant because it provides no lasting positive outcomes. I have had additional testing done. Thankfully there are no other medically identified digestive challenges. My best outcome so far is the Paleo diet. Not my preference, but I do get some relief. Also know your own trigger foods. What I eat does seem to matter a LOT!

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I totally agree, makes no difference what I eat, a piece of celery or a large hamburger, results are the same. The only thing that's helped is the infusion therapy in controlling the diarrhea. Still suffer from severe cramping 24/7 and fatigued all the time. I've lost a lot of weight, over 50 lbs and I'm a small woman to begin with. Don't know at what point weight loss becomes dangerous.

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Does this look like it would be ok as a veggie substitute for me with
Gastroparesis!

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@carolyne

I totally agree, makes no difference what I eat, a piece of celery or a large hamburger, results are the same. The only thing that's helped is the infusion therapy in controlling the diarrhea. Still suffer from severe cramping 24/7 and fatigued all the time. I've lost a lot of weight, over 50 lbs and I'm a small woman to begin with. Don't know at what point weight loss becomes dangerous.

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What is infusion therapy for MC?

So sorry to learn of your situation. Cannot answer question re wt loss.
I eat no processed foods and no grains. Limited eggs, no soy.
I have lost weight also, and am approaching ideal for my small frame. I hope wt decline stabilizes @ some point.

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The infusion therapy I receive is actually for Krones (sp) Disease and IBS but none of the medications I took could take care of my symptoms. It's Entyvio. It has relieved my diarrhea but still cramping, crippling fatigue, no appetite and continued weight loss. I had to wait for approval from Medicare before I could receive, the infusions cost $42,000 a year, too rich for my blood to pay. I get my 4th infusion tomorrow. Keep me posted as to how you are doing.

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This website is focused on microscopic colitis. There's a great of info:

https://www.perskyfarms.com/phpBB/index.php

Hope this is helpful to you.

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I was diagnosed with collagenous colitis 15 years ago. Daily imodium kept it under control until I contracted C-Diff three years ago that kept coming back until I had it for six months, then imodium did not work. I went through all of the suggested treatments, including budesonide, and nothing worked to stop my eight or nine bowel movements a day until I was put on Colestipol. I take one imodium and one Colestipol per day to control my symptoms and I watch my diet. I basically eat the Mayo Clinic recommended diet, gluten free, lactose free, lean protein, very low fiber, etc.. I take Cymbalta and that probably contributes to my intestinal problems, but I am unable to get off SSRI's because nothing else helps my depression. I'm glad someone brought this up because it is very rarely mentioned and there is not a lot of support available. Thank you!

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@denisemarys

I was diagnosed with collagenous colitis 15 years ago. Daily imodium kept it under control until I contracted C-Diff three years ago that kept coming back until I had it for six months, then imodium did not work. I went through all of the suggested treatments, including budesonide, and nothing worked to stop my eight or nine bowel movements a day until I was put on Colestipol. I take one imodium and one Colestipol per day to control my symptoms and I watch my diet. I basically eat the Mayo Clinic recommended diet, gluten free, lactose free, lean protein, very low fiber, etc.. I take Cymbalta and that probably contributes to my intestinal problems, but I am unable to get off SSRI's because nothing else helps my depression. I'm glad someone brought this up because it is very rarely mentioned and there is not a lot of support available. Thank you!

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@denisemarys
I was diagnosed with collagenous colitis 13 years ago. I was initially treated with methotrexate for a month. It worked- diarrhea stopped.
Since then I have had on and off episodes. 2915 I started immunosuppressive Imuran. Worked very well, but I got many serious infections and stopped after 7 months. I remained okay until a couple of years ago, when symptoms recurred, maybe not identical
, but now seriously affecting my quality of life.
Plan now is getting a referral from my internist to my local gastroenterologist about starting treatment again. Can’t wait!

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I too was diagnosed with MC 2 years ago and have been frustrated with bloated stomach and diarrhea. The only thing that helps is keeping a food diary. I wrote down how I felt after each meal and was precise with naming the food or drink that I consumed. Pasta and fatty sweets are issues, as well as Asian foods and certain spices and seasonings. Restaurants can be a problem as they cross contaminate and use different oils that I never use at home. I tested negative for celiac disease. I researched and found out a lot of semolina flour pasta has the highest degree of gluten so I stopped eating it. I can eat regular bread ok as long as I don't eat too much. Bakery type sourdough bread is ok too. Bottom line, I must eat plainer foods and limit fats. I cook or steam veggies until they are soft which helps. Eating at home is best as I can control the preparation of the meal. I ALWAYS have issues with restaurants! Basically eating lean meat and cooked veggies works for me. Not too gourmet but I feel much better!

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