Anybody diagnosed with microscopic colitis?

Thank you! What is the name of the group you moved message ? I appreciate your help. We are unsure of what to do.

Hi @maryjos, @amandaburnett merged your post into the Digestive Health group and in the Colitis – Microscopic/Lymphocytic/Ulcerative discussion so that you can read what other members have shared and post any questions you may have. If you see a members post and would like to comment or ask a question of the member, just click the REPLY button below their post. If you want to post a new separate question to all members following the discussion, scroll to the bottom of the page, type your question or comment and click the POST COMMENT button.

I was diagnosed with lymphcytic colitis about a year ago. I refused anything with steroids in it because of my age (72) and my osteoporosis. It comes and goes. I have no pain just immediate diarrhea. I have tried Pepto Bismol in the past and after a few days I was constipated. Now I am trying it for 3 months taking 2 pills 3X a day. So far today, it hasn't worked. I am down to 107lbs. My lipase is a little elevated at 154 but it was 215 a weeks ago. My amylase was 91 a few weeks ago. I have had it higher and see a gastroenterologist with Mayo. Soon to be referred to the Pancreatic Department in May to continue to follow up. I honestly don't know what is causing this colitis or how I got it or why it comes and goes! I work out twice a week with a Wellness coach. I'm even considering antidepressants because of the amount of stress I've been under. Any ideas would be helpful?

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.

The mucus only happens when I take the Zenpep with every meal.
I now only take one Zenpep (40,000) with my evening meal.
The mucus is literally the lining of my colon and the painful cramping is next level difficult and no way to live.
I can live with 5-6 trips to the bathroom a day…
I can’t live with running to the bathroom 15 times a day…
There is no cure, just nutritional management and Zenpep in a dose that enables me to have as normal a life as is possible.
Anyone relate???

I feel for you, I suffered with this as well.

STEROIDS- ask your doctor, steroids for me were a lower dose which is tapered over many weeks. May not impact you as much as it will benefit you.

ANTI-DIARRHEA - loperamide/Imodium along with eating a “BRAT” diet during exacerbation: banana, white rice, plain unsweetened applesauce, plain white toast worked for me

Stress does not help so any anti stress measures are good.

Not sure what my amalyse & lipase were.

QUESTION: are you on omeprazole? That was my cause.

My lymphocytic colitis was diagnosed in 2016 after a colonoscopy due to mild diarrhea. After the colonoscopy, it went into remission but flared up in April 2022.

Has anyone experienced muscle pain and headaches as symptoms? Coincidentally, I started having severe muscle pains or spasms in my neck and left shoulder blade area, and headaches on the left side of my head when the pain radiates there. (Temporal arteritis has been ruled out with testing.) My GI Dr prescribed a three month course of budesonide, which I haven't started yet because my diarrhea symptoms have improved to a couple times a day without cramps. If taking the budesonide would relieve my muscle pain and headaches, I would consider giving it a try. I haven't changed my diet much. I am lactose intolerant so drink lactose-free milk, and yogurt. I take several meds that may have caused my recent flare, PPI, Zoloft, and Trazodone (which I am weaning off of). I must take the PPI because I have Barrett's Esophagus.
Thanks.

Book by wayne persky is great. Mycroscopic colitis. It is crazy all the issues caused by this colitis. Also budesonide was a life saver for me. For 4 years I felt ill as if I had a virus that would not go away. Took several weeks for diarrhea to improve but the stuff is terrific for me. Even helps with arthritis pain in back and knee. Be sure and taper off slowly and I have to go back on it but I have several digestive issues. I also take apriso for inflamation in gut. The book answers so many questions my pa is recommending it to patients. Hope this helps

I have collagenous colitis which is similar to what you have. I’ve been given all the medications and nothing brought the diarrhea under control. I am now on infusion therapy and my symptoms have greatly improved.

I can relate to this! I was diagnosed with microscopic colitis 15-20 years ago and Prednisone was the ONLY thing that helped. 5 years later I went on a Gluten Free diet and it cleared up!
Now I have major digestive issues: Hiatal Hernia surgery last February (my stomach was literally in diaphram) diagnosed with gastroparesis in May which required another stomach surgery in October. Began to get really sick afterwards and at first they diagnosed dumping syndrome, and 5 months later I finally requested a stool sample and I had C-Diffe all the while...since then I still have problems recurrent diarrhea but now it is getting worse and seems different than before. I mentioned Microscopic colitis and they almost laughed at me (the NP was very rude about it). Seeing a new GI doc soon! Wish me luck!