I am looking for others diagnosed with microscopic colitis

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!

I feel for you! I was diagnosed with c-diff (intestinal infection I had for 5 months) and moderate pancreatic ensyme insuffiency. They prescribed Zenpep but I waited and they did a stool sample 2 weeks later and c-diff was gone and pancreatic enzymes were back to normal. My GI doctor told me I didn't need Zenpep and had me follow up with his NP because I still had diarrhea and she got angry with me and said I needed to follow the doctors orders and take the Zenpep! I reported her and did not take the Zenpep. So bizzarre...I am so weak from the pain and diarrhea and get confused with all of this stuff!

Yes, good luck, a good gastro dr. can find it with a colonoscopy, just need to take a biopsy and view under a microscope. Let me know what you find out.

I have a very long history of symptoms like colitis. I had a colonoscopy six months ago and biopsies revealed collagenous colitis. I was prescribed budesonide for three months--reducing the amount every month until finished. It made a huge difference in my ?diarrhea-type episodes, consistency of BM's... I was thrilled. It has been about 2 1/2 months since I finished the budesonide. I still have the occasional "flares" which depend on what I eat but overall the urgency is much less. Changing doctors is what has helped the most.

Unless someone has actually lived with microscopic colitis, they have absolutely no concept of or appreciation for the impact of this condition has on ones life. I have had it for 23 years. Budesonide could only be taken for 9 weeks. I would have thought once the inflammation was “healed” My elimination would have returned to normal. But even with rigid and strict dietary changes, I am back to full blown MC daily and nightly. Have tried the Budesonide route twice over a period of years and am considering it again, but very hesitant because it provides no lasting positive outcomes. I have had additional testing done. Thankfully there are no other medically identified digestive challenges. My best outcome so far is the Paleo diet. Not my preference, but I do get some relief. Also know your own trigger foods. What I eat does seem to matter a LOT!