microscopic (lymphocytic) colitis

Hello, I’ve been diagnosed with collagenous colitis, similar to MC. It’s a terrible to have, a lot more than diarrhea and cramping, body aches, weight loss and extreme fatigue. None of the conventional medications worked for me. I’m now on Entyvio infusions every 8 weeks and its brought my symptoms under control and I’m feeling better.
I know what you’re going through, gastro intestinal issues are the worst!!!!
Be persistent with your gastroenterologist until you find something that works for you.

Hey Ferguson23! There are two defined types of microscopic colitis, lymphocytic and collagenous. Other than how they look in a biopsy study, they are identical in regard to what they mean to patients - it causes inflammation and irritation and a complete upset of our lives - we all suffer mostly the same types of physical problems and have the same medical needs. I have collagenous MC, but we are colleagues in suffering. I am just getting my case into remission. Here's how, after nearly a year: First, read the microscopic colitis books by Wayne Persky and visit the most active online discussion board on it (he co-leads it), here: https://www.perskyfarms.com/phpBB/viewforum.php?f=79 I have found the best help for me from studying all of those patients' discussions on the board there and from reading Persky's "Microcolitis Diet Book" https://www.amazon.com/Microscopic-Colitis-Diet-Book-Choosing/dp/1736406671/ref=pd_lpo_2 AND from reading his overall book on MC: amazon.com/Microscopic-Colitis-Revised-Wayne-Persky/dp/1732079234/ref=sr_1_1. Also, there is already a lot of conversation on a Mayo discussion simply named for microscopic colitis. It is here: https://connect.mayoclinic.org/discussion/microscopic-colitis-2ced1d/ Sticking to a simple, bland diet (and drinking only filtered water) is crucial. MC is caused by inflammation. Budesonide is a fairly safe steriod that will help you cut down the inflammation. Many with MC also suffer from bile acid malabsorption - I found I had to take cholestyramine as well to help cut back the acid. These two medicines have been helpful but are not a fully cure. Food sensitivities MC patients develop over time can cause histamine hysteria in the gut. Things you used to eat are no longer tolerable and upset your gut. So... THE SIMPLER YOU MAKE YOUR DIET, THE FASTER YOUR RECOVERY, eating only the foods that do not make your condition worse - mostly baked clean meat protein. 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. You might think low-FODMAP diet will work. It doesn't for most of us. Many can't eat any type of fruit or vegetable. I was trying FODMAP and 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, pork tenderloin and steak (because we also need fat or get protein poisoning) – this switch 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. If you read the resources I have shared with you, you will find other people who share some of the elements of your story so you can find the path to your remission. Remember that there is no "cure," and remember that every patient has different gut sensitivities. You have to find your way through as well as you can. Listen to other sufferers but especially listen to your gut. Also, there is a microscopic colitis patients group on Facebook that you might consider joining: https://www.facebook.com/groups/microscopiccolitis/. One more tip: Researchers are seeking more people to share their experiences so they can help MC sufferers better understand the disease. They are about 200 contributors away from being able to officially report based on patient trends which treatments are reported to work better for different subgroups with common aspects. To find out more you can take the survey and also join that discussion board: https://stuff.health/s/FxpUB9XG

How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with MC?

Have you looked at Mast Cell Activation Syndrome? An overlooked area that once addressed may be of help to you. It has a tremendous support system on line of help and healing. I would start with Dr Beth O’Hara, and Dr Becky Campbell. It can’t hurt to look and learn . It has saved me learning how to save myself !

I’m concerned because I’m experiencing all the symptoms of this and my biopsy of my left colon said edema with lymphocytic aggreggates. Is this a sign that could be MCAS? 😢

I’ve had EPI for several years and managed it well with Vital Pancreatic Enzymes ordered from Amazon. Recently I’ve been diagnosed with lymphocytic ulcerative colitis and am taking Budesonide for 10 weeks. (BTW, I’m convinced this all started because I had my gall bladder removed. Before that I never had any problem and never gave a thought to what I ate.) With Winter coming up, I’m thinking about flu, Covid, and illness in general. My question is what medicines/antibiotics will not interfere with or further aggravate my stomach issues?

I had my gallbladder out and my health went straight to ...bad.. 3 years later I saw on a T (after 12 CT no show) they left metal clips in me..I'm highly sensitive to metal.. tried B12 shots and they have nickel in them.. and I was about to use my epi-pen.. why is it some people get better after their gall bladder is out and others.. worse..?? IDK..thisis really frustrating!! Did the MRT food sensitivity and worked on that for about 5 months until I found out there was a phase 6 and it lasted about 2 months and said..I quit. just have to be really careful what I eat when..prayers for you and everyone on here!! Atleast we have each other!! And ..there is always God and Jesus!!

Hi @jlmp - I wanted to let you know I moved your post here so you could chat with members talking about lymphocytic colitis and related issues such as @anniegk @andersj @ferguson23 and others. Hoping they will have some thoughts for you on what antibiotics or other medications for colds and flu this winter will not interfere with or further aggravate your stomach issues.

How is the budesonide working for you so far? Are you having any side effects?

Budesonide has greatly improved my digestive symptoms, along with avoiding fiber acidic foods, and all meats except fish and chicken. But it seems to be causing extreme fatigue, insomnia and severe pain in joints with arthritis.

I've had collagenous colitis for 8 years. It was well controlled with diet and managing stress until I got hit by norovirus 2 years ago. It is good to keep a food journal, to see if there are any triggers for flares. Stress is also a huge factor in flares. My GI put me on 9 mg Budesonide for a few months, a corticosteroid with few side effects because it mostly "calms" the colon. I've never had pain with it, just having to know where bathrooms are. I'm sensitve to legumes and gluten, and many drugs (NSAIDs, ACE, statins). I also have celiac (16 years). https://consultqd.clevelandclinic.org/microscopic-colitis-what-is-it-and-what-are-the-treatment-options