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 rebe410 @rebe410

I have MC it started after my gallbladder was removed by emergency. I also have Ostepenia and Osteoporosis in spots and nobody has mentioned Budnesoide is bad for me!
I had been in remission for 3 years but unfortunately it returns!
I also am looking for another med to take for it but research is limited. Watch your fat intake that does help somewhat.
Just know you aren't alone and we are all here for each other!

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@rebe410 Oh yes, I know all about fat intake! Even though I’ve had MC for over 35 years, it changed a lot after I had my gallbladder removed several years ago. I’ve always been really good about what I eat anyway, but wow…the slightest bit of fat. Holy cow.

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Profile picture for janstur @janstur

@rebe410 That's so interesting because mine started after my hysterectomy.

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@janstur

Stress is a giant trigger and guessing that's how we all started. The stress of a major surgery!

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Profile picture for ndough @ndough

@rebe410 Oh yes, I know all about fat intake! Even though I’ve had MC for over 35 years, it changed a lot after I had my gallbladder removed several years ago. I’ve always been really good about what I eat anyway, but wow…the slightest bit of fat. Holy cow.

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@ndough People say watch your fat intake but I am way underweight. It's a Catch-22!

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Profile picture for rebe410 @rebe410

@janstur

Stress is a giant trigger and guessing that's how we all started. The stress of a major surgery!

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@rebe410
So true!

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Profile picture for janstur @janstur

@ndough People say watch your fat intake but I am way underweight. It's a Catch-22!

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@janstur but it doesn’t take much. And it’s also the kind of fat you consume. There’s a huge difference between olive oil (which is good for you) and vegetable oil (not). Read labels. Unsaturated fats are good for you, saturated not. However, your gallbladder is the “control valve”, so to speak, from your liver that releases appropriate amounts of fat into your system. Without it, well…. I’ve always been underweight until they removed my gallbladder!

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Profile picture for rebe410 @rebe410

@janstur

Stress is a giant trigger and guessing that's how we all started. The stress of a major surgery!

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@rebe410 The original stress for me was heat stress! Makes sense, it’s the biggest stressor on your body. And my flare ups would occur like clockwork at the beginning of each summer (I live in Texas).

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Profile picture for nycmusic @nycmusic

@janstur there must be an alternative, less harsh…I sympathize because I, too want to keep playing piano as long as I can…I had CRC and some of the meds for it wreck hands…fortunately, some genetic testing got me to immunotherapy, no hand problems…hang in there, keep asking…best of luck-and more music !

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@nycmusic Thank you so much for the encouragement, however I’m in my 70’s now and OA has pretty much taken over my hands anyway. I’m afraid my days of playing are done.

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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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I wish we could have a group in person, but I'm all the way in Reno, NV.

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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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I have lymphocytic colitis and Celiac Sprue. I was used to most of the symptoms but not the severity. It took many months to get diagnosed and treated. What has worked for me is Colestipol and or Cholestamine.
I don’t do any caffeine anything (coffee tea chocolate) no sugar or sweeteners and only healthy oils.
It can be tricky but after 3+ years I have periods of remission. Taking good pro and prebiotics and a good multivitamin is essential.
I don’t do Imodium or pepto at all…too many side effects (migraines mostly). AIP way of eating helps so much. (Urban AIP…life saver!)
Find a good gastroenterologist and find what works for you and your unique body. It doesn’t have to ruin your life although it seems like it at times. Know when to say “no can’t do that, I am just not up to it”…rest when you need to. HYDRATION and STRESS reduction are a must. It is doable!!! Sending love from this Grammy….

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Profile picture for ndough @ndough

@nycmusic Thank you so much for the encouragement, however I’m in my 70’s now and OA has pretty much taken over my hands anyway. I’m afraid my days of playing are done.

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@ndough hugs ! enjoy listening in any way you can find.

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