I am looking for others diagnosed with microscopic colitis

I’ve been on budesonide for six years with no remission. I’ve never tried their Pepto-Bismol tablets for eight weeks. I’m going to start today and let you know how that goes. I’m excited to see that something like that work for somebody.

Hello
I was just diagnosed with LC a month ago. I have had some success with imodium. I don’t want to knock my immune system down with budesonide. I have it and might need it once the 6 weeks of imodium is up. Pepto makes me anxious and the muscle jerks are weird.
I would love some advice about living a better life as far as traveling or doing anything really.
The thought of being too far from a restroom consumes me. My anxiety attacks seem worse. I am weak nauseous and fatigued. I do have some better days.
I wonder if remission is just a term that dangles out there, or if it worth hoping for.
I have been a patient at the Mayo in Scottsdale for 13 years. After my celiac and colitis diagnosis my care has been anything but stellar.
I am looking into options in SLC, no one here in the LV area even treat colitis.
My follow up appointment in AZ will be 4 months after diagnosis. I am just winging it trying to get any advice.
Hope you feel better soon!!

Thanks! there’s so much information and yet very little in the way of caring it. Another friend who has it and I are starting to eight week Pepto-Bismol trial. I stopped taking budesonide. I’m really hoping that this will work as it seems to have for others. I will definitely let you know. Hope you find some relief too. I will say it’s been 24 hours on it and I haven’t had any diarrhea for 24 hours. That’s hopeful!

Does the budesonide help heal anything…or does it just keep a patient more comfortable. I am nervous about starting on it. In particular how it dampens the immune system.
Did you have any lasting side effects?

I don’t think there’s any lasting issues with it. I didn’t really help me that much. Once in a while it seemed like I would get a little bit of remission but as soon as I started tapering it came running back. It’s supposed to help most people maybe I’m just the one off but I wouldn’t be too afraid of it. The steroid works in your intestines it’s not stomach. I did not have any side effects from it. Hope that helps!

I was diagnosed with microscopic colitis about 7 years ago through a biopsy. Nothing seemed to help the symptoms. I went to Mayo Clinic (Phoenix) and had another series of tests and was placed on Entyvio. The microscopic colitis actually had disappeared, as my colonoscopy biopsies were now negative but I do have Crohn's Disease (I have 2 markers for Crohn's) . I have been on the Entyvio for 3 years now and it does a really good job.

So glad to hear your microscopic colitis has disappeared!!!!!! What a blessing. I just have collagenous colitis so maybe mine will be cured with Entyvio infusions. I have no other bowel issues.
Thank you for posting.

I hope the Entyvio helps you! It is a monoclonal antibody and targets inflammation areas. I was surprised that my collagenous collitis had disappeared because I thought I had it for keeps. Crohn's Disease is elusive at times. Symptoms can come and go. I also had a duodenal stricture which I understood was permanent. That is no longer there either. I know these weren't misdiagnosed because the doc did an endoscopy (EGD) and actually stretched the stricture during several endoscopies. The colon was biopsied. I'm glad I finallywent to Mayo Clinic, which was where I was diagnosed with Crohn's. The doctors before Mayo told me that I would have to have the duodenum and part of my stomach removed because of the stricture! That sent me running to Mayo! I still have my stomach, intestines, getting Entyvio, and am doing very well! (4 years now.)
I wish you the best with your treatment!

All you say is very positive. I’ve read on this site that Entyvio had stopped working for some people and that worried me. You are a good example that it continues to work and also heals.
I’ve had no adverse side affects.
I understand my immune system is lowered so I always wear a mask when I’m out and about as a precautionary measure. I try to stay safe.
Thank you for the communication.
Carol

Hi Carol,
Good for you for being a masker! So am I. I got my 5th Covid shot (and annual flu shot) yesterday. I still won't take any chances. We still have a pandemic.
Staqy healthy!
Peggy 🙂