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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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ndough | @ndough | 1 hour ago
In reply to @donnagail "@ndough Yes, aside from Citricell, Metamucel, phyllism husky all do the same thing. There is so..." + (show)
Profile picture for donnagail @donnagail

@ndough Yes, aside from Citricell, Metamucel, phyllism husky all do the same thing.

There is so little research being done for MC because they dont think enough people have it or the pharmaceutical company that makes Budesonide is making a killing. In the past 8 months, chronic diarrhea caused 3 UTI'S in which taking a broad spectrum antibiotic caused C-Diff for 2 months. My system has been so compromised, a month ago I was dealing with E-Coli and Noravirus. No clue how I contracted either. I went to AI and said I wanted to go extreme to starve off the bad bacteria that has taken over my gut, and I probably have SIBO in my small intestines. AI suggested the Elemental Diet, a very challenging liquid diet for 2 weeks or 3 weeks if I do have SIBO. I bought a couple powder samples that just came in. I plan to drink one today and tomorrow to see if I can get them down. AI has TONS of information on how to do it. I am trying to find a telehealth registered dietician to guide me through it. I have to do something to get my microbiome balanced. It is going to be HARD! Pro and prebiotics as well as the paleo diet werent doing it. I do think the pale diet will be best once I have good bacteria taking my gut back. I did my own testing for gluten intolerance and casin and I have a high intolerance for both which is the case with most MC patients.

Please let me know how you are doing.

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@donnagail MC was discovered in the late 80’s and that’s when research started on it and other forms of colitis that were not ulcerative. Prior to that, all GI’s diagnosed colitis as Ulcerative Colitis. If they found no ulcer, than they said you had IBS. Most of the GI’s I’ve had over the years realized I did not have IBS because I shared only 1 symptom - the explosive diarrhea. I did not have any of the other symptoms at all. Never did. Unfortunately, Budesonide is really for Ulcerative Colitis. It only works 50% on MC. The reason why not too much research has been done on MC is because 99% of the people who get it are women and, well, you know… Has nothing to do with big pharma. I constantly get UTI’s when my MC flares up. It’s impossible to keep yourself clean! My husband says he’s (finally) going to buy me a bidet! Yay! I got Noravirus last year but it was really going around. Almost everyone I knew came down with it E-coli was probably from something you ate. PLEASE do not think of AI as a doctor!!! AI is not a real person. PLEASE do not go on the elemental diet during a MC flare up (or even when it’s not flared up) until you talk to your doctor about it. You may wind up damaging your large intestines even more. For advice, go to a Female GI or PA. I hate AI. I do not trust it. So many times it turns out that what it tells you is not true. Don’t rely on advice you receive through the internet. Have your Dr or a real live nutritionist (one you actually see) plan out a diet that meets your needs. Stay healthy! 👍

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