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Microscopic colitis


Mon, March 18, 2019 10:46 AM

What experiences has anyone with this diagnosis had? I was just diagnosed with this disease after years of diarrhea.

FPO Terry Tellez
Joined Mar 12, 2019

Fri, April 03, 2020 1:56 PM

Reply posted for ahopelliott.

For snacks (or a quick breakfast or dessert), I have found it helpful to make a double batch of paleo or gluten free muffins sweetened with maple sugar or honey (if you can tolerate) and keep them individually frozen and pull out daily. 

FPO Momof6
Joined Jan 24, 2020

Wed, February 05, 2020 8:28 PM

Reply posted for Joanstephens1.

I was diagnosed with Microscopic Colitis about a year ago, however I've had the symptoms for about five or six years.  Do you guys have any advice on snacks to eat? Especially during a flare up?  I have a list of meals to eat, but I really struggle with things between meals.

FPO ahopelliott
Joined Feb 5, 2020

Fri, January 24, 2020 8:26 PM

Reply posted for GlouGlou.

Glouglou,

Yes! This is my exact issue. My GI doc diagnosed me with post-infectious IBS, but I never had an infection or virus preceding my symptoms. She prescribed Flagyl at the time (09/2019) but I didn’t take it because my symptoms began to get better. Recently I had a flare and I just started the antibiotic. So, hoping it will get rid of this. I’ve been dealing with this on and off (mostly on) for almost a year now. But my biggest issue is the morning, especially if I wake up early, I feel like I need to use the bathroom even before I get out of bed. Then I have to use the bathroom two more times before the morning is over. After that, I’m usually fine. I wake often at night with my baby, and I noticed that it seems to act up if I didn’t sleep well for a few days, but I’m not sure... 

I really think I have Microscopic Colitis rather than post infectious IBS. 

FPO Momof6
Joined Jan 24, 2020

Thu, November 14, 2019 9:36 AM

Reply posted for Terry Tellez.

I have had it for a little over 3 years.  Ill admit that I dont have as severe symptonms as others.  For the first year or so when I would wake up in the morning I would immediately have to use the restroom.  Now that maybe happens to me one day a week and the other 6 probably 15-30 min later.  I decided not to take any medication for this. 

My question that I wonder about related to sleep and MC.  When I have a bad nights sleep ie. waking up alot I find that come late morning (before i normally wake up) my MC is forcing me to get out of bed and use the restroom.  Anyone else w/ this issue?

FPO GlouGlou
Joined Nov 14, 2019

Tue, July 02, 2019 7:09 PM

Reply posted for Joanstephens1.

I was diagnosed with crohn's in the late 1990's, and was also just diagnosed, June 28th, with microscopic colitis, specifically, collagenous colitis, via biopsy after similar symptoms to yours.  I knew it was not crohn's and sure enough, I'm in remission (Humira).  Perfect colonoscopy except the pathology.

The Dr told me that he'd never seen it in his 30 years of practice...."head scratcher". I told him I already knew that's what I had, cause I had the window open on my computer at home with your story, just like mine.  And there are, at least, 2 of us.

I researched treatment and knew all all about side effects, dosage....etc.

Your story helped me... Thanks so much!

FPO Joanstephens1
Joined Jun 11, 2019

Sat, June 22, 2019 8:39 PM

Reply posted for agewithgrace55.

I thought that I’d include the link to an IBD food list as it has been very helpful. There’s more to eliminate that isn’t mentioned here, but I found this was a good start, especially for flare ups.

https://www.umassmed.edu/nutrition/ibd/foods-list-for-ibd-diet/

FPO Redrockgal
Joined May 30, 2019

Sat, June 22, 2019 8:32 PM

Reply posted for agewithgrace55.

I know how you feel. IBD is very frustrating and can be life changing until we can get control of it. I was lucky as through my persistence, I was diagnosed in 6 weeks. I was recently diagnosed with Lymphocitic Colitis and like other types of colitis, being on a strict food elimination diet has helped me tremendously. Like you, I didn’t like what I’ve read about the meds, although it is needed by many and a blessing to some. I desperately searched for info here and other forums and found Perskyfarms.com which is all about colitis. I found diet suggestions there and on the UMass website (They have a great IBD food chart for flare ups and recovery). I cut out dairy, caffeine, grains, sugar, soy, most fiber (Definitely no salads, lettuce, spinach or kale...pretty much all veggies!), including most fruit, all meat except fish and poultry, and more items. I keep a daily food diary and BM track. That was back around May 13th. I started Align brand probiotics. I’ve been told that VSL3 is even better. My symptoms are much better, although not perfect yet, since I made these changes. I’m not housebound but stay prepared if you know what I mean and avoid going places where there aren’t close convenient restrooms. My recent visit to a dietician was time well spent as she validated what I’m doing and gave me more suggestions such as cutting out all white powder sweeteners and suggesting a gluten free diet and eating only cooked or canned fruit with no added sugar. I had felt that my continuation of eating eggs and possibly soy or gluten are preventing me from further healing. Cutting out eggs the last couple of days helped. Sorry for the lengthy post but as others have said, we all have different food sensitivities. What most doctors don’t realize is that Colitis creates new food allergies that you may not have previously had. Good luck with your progress.

FPO Redrockgal
Joined May 30, 2019

Wed, June 12, 2019 6:49 AM

Reply posted for Terry Tellez.

I have just been diagnosed with Collagenous Colitis.  I've had diarrhea for over twenty years and kept attributing it to stress or eating habits.  As I got older, what I thought were age related aches and pains started becoming life intrusive, especially with the diarrhea.  I have a saying, which isn't really funny, but "I eat, therefore I run (to the bathroom!).  I'd had three colonoscopys and surgery for an anal fissure ( I asked the surgeon what caused this extremey painful condition and he indicated my sanitary habits were less than desirable.  I'm obsessive about cleanliness, and his off hand explanation was very hurtful.)  I go back for my followup appointmnt to discuss treatment soon.  I have a feeling, based on what I've read, that I will be giving up my morning coffee with milk.  I'm nervous about medication and going through the process of treatment.  I've developed a routine with eating wherein I always know where a bathroom is within thirty minutes of eating, especially salads.  Going through the process of acclimating my body to treatment and hopefully the subsequent cessation of symptoms will require a different mindset.  Is anyone at a similar place?

FPO agewithgrace55
Joined Jun 12, 2019

Wed, June 05, 2019 11:17 AM

Reply posted for kiltubrid.

I was diagnosed with Crohn's in 1982, and was just diagnosed with Microscopic Colitis, after 5 months of chronic diarrhea. Since some of the symptoms are similar to Crohn's (diarrhea, fatigue, stool test revealing inflammation), it took a while to rule out a Crohn's flare (I'm in remission right now). Lots of other things were ruled out, too -- celiac disease, lactose intolerance, thyroid problems. Finally a sigmoidoscopy led to a biopsy showing Microscopic Colitis. My GI put me on Budesonide, and it's working well so far. (Haven't started tapering yet.)

Since I have had Crohn's for so long and know what a flare feels like, I was pretty sure this wasn't Crohn's. I didn't have the joint pain, fever, constant abdominal pain  that I get with Crohn's. 

My doctor said it's not common for someone to have both Crohn's and MC, but she's seen about a dozen patients who have both. 

I'm curious to read the stories of others who have MC, and would love to know if anyone else out there has both Crohn's and MC. 


FPO kiltubrid
Joined Jun 5, 2019

Tue, April 30, 2019 10:25 AM

Reply posted for results.

I was diagnosed with this June 2011. It's also labeled as collegenous colitis. I have tried prescription drugs and my body didn't accept them. I seem to be allergic to a lot of things (lucky me!) I take the equivalent of fiber con and immodium once a day. This was suggested to me by my gastro doctor. Sometimes it works, and other times not so much. As you can see, I've had this horrible disease for 8 yrs. and am still trying to deal with it. I wish I had some answers for you that would be more helpful. I do find that when I am stressed, it gets worse. My mornings are taken up with bathroom trips. It tapers off early evening and throughout the night. Thank God for that. But, I know that I will have to go through the same old routine every morning. I always try to schedule appointments, etc. after noon because of this. It does hamper my lifestyle. I am glad that I am retired and don't have to worry about going to work.

I have a very understanding husband. This helps a lot. I just joined this forum a few days ago, hoping to find some answers. God Bless.

FPO results
Joined Apr 27, 2019

Fri, April 12, 2019 5:04 PM

Reply posted for charbs.

I was diagnosed with collagenous colitis (one of the microscopic colitis's) about 15 years ago.  I've been on probably every med you can think of, and the only one that consistently kept me in remission was Budesonide (Entocort).   Unfortunately you really can't stay on that forever, especially if you have osteoporosis, so my GI urged me to try 6MP.    That seems to be working for me, for now, thank God.
Sue

FPO SueAndHerZoo
Joined Apr 13, 2019

Tue, March 19, 2019 5:14 PM

Reply posted for Terry Tellez.

I too have just been diagnosed with lymphocytic colitis, which I understand is one of the two types of microscopic colitis’s. My main complaint has been 10plus years of diarrhea. They want me to use balsalazide or lialda. I was wondering if anyone here had use either of these drugs? Any help is truly appreciated! 

FPO Baxter82
Joined Mar 7, 2019

Mon, March 18, 2019 12:28 PM

Reply posted for Terry Tellez.

I’ve never heard of this. How is it different from ulcerative colitis?

FPO charbs
Joined Oct 31, 2016

Mon, March 18, 2019 12:28 PM

Reply posted for Terry Tellez.

I’ve never heard of this. How is it different from ulcerative colitis?

FPO charbs
Joined Oct 31, 2016

Mon, March 18, 2019 12:28 PM

Reply posted for Terry Tellez.

I’ve never heard of this. How is it different from ulcerative colitis?

FPO charbs
Joined Oct 31, 2016

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