Microscopic Colitis

Hi @janstur - you've been through a lot since your microscopic colitis diagnosis. It makes sense you'd be wondering why the flareup: Hysterectomy? Bug in the Caribbean? Or something else?

So that you can chat with others who have also mentioned microscopic colitis, I moved your post here:

- Microscopic Colitis https://connect.mayoclinic.org/discussion/microscopic-colitis-5/

Hoping you can connect with others such as @ymoreno2 @pb50 @kjane322 and others. I'd also like for you to meet @jlharsh.

Is your main symptom diarrhea? When this happens, is there anything that provides you some relief?

Hi @janstur - you've been through a lot since your microscopic colitis diagnosis. It makes sense you'd be wondering why the flareup: Hysterectomy? Bug in the Caribbean? Or something else?

So that you can chat with others who have also mentioned microscopic colitis, I moved your post here:

- Microscopic Colitis https://connect.mayoclinic.org/discussion/microscopic-colitis-5/

Hoping you can connect with others such as @ymoreno2 @pb50 @kjane322 and others. I'd also like for you to meet @jlharsh.

Is your main symptom diarrhea? When this happens, is there anything that provides you some relief?

Hi. I’m Pam. I was diagnosed with MC- collagenous variety- in 2022. That was after six months of chasing a diagnosis and dealing with frustrating red herrings in the form of infections that were coincidental. It was the most dreadful Period of my life.

After a colonoscopy validating the diagnosis I did the full course of Budesonide -9mg for 3 weeks, 6mg then 3 mg and it was a miracle.

There really isn't anything as effective as Budesonide. I did relapse twice - sadly not uncommon - and am now on 3mg as a maintenance dose and doing great.

Couple of questions: there are some known medication triggers. The three biggest offenders are:

NSAIDs - Ibuprofen
PPI (Nexium etc)
SSRI anti-depressants

Are you taking any of those routinely?

For the time being you will be happier on a BRAT diet - bananas, rice, applesauce and toast.

The ONLY thing that helped it subside is PeptoBismol gel filled caps and after reading some research and checking with my Gi doc, I took 3 capsules 3 times a day until the diarrhea either stopped or vastly improved. Then i dropped back to twice a day and then dropped to two capsules twice a day. When I could eat low fat / low fiber food and not have immediate diarrhea, i dropped to one capsule twice a day.

It is a career level effort to get this right. I hope my experience is helpful.

Thank you for the introduction @lisalucier . Hello @janstur .
I read through your comment and do relate to quite a bit. I am not dealing with microscopic colitis…at this point I can’t tell you what I am dealing with. It gets exhausting and we can’t take any time off. I feel your pain through your words and I am so, so sorry. Keep going. No matter what, keep going! I am hopeful for you by the mere fact you found this group of caring folks.

For whatever reason my body has systemic problems that require a super high level, and uber consistent diet and exercise. It is scary to lose weight when you don’t want to. I keep thinking I’ll get a magic formula figured out and conquer it.

I had to look this up to learn a bit more about it so am including that link (now you know the extent of my knowledge). It sounds like there are a couple different types and I don’t think I saw you mentioned yours. https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/symptoms-causes/syc-20351478

What brought you to Connect? I am glad you are here.
You mention a colonoscopy provided a reset. Would it be worth asking your provider what about a colonoscopy would have helped, and would make it temporary?

That is great! When it works it does work pretty fast. I’m gonna encourage you to also steer clear of the major med triggers if you can. Especially any you may have taken frequently over a long time. For me that was ibuprofen and PPIs (eg Nexium).

Be grateful you respond to Budesonide .. I’m happy for you. But it is prone to relapse. I have relapsed twice in four years - but my GI doc was not surprised and i went on a limited course of Budesonide. After the second relapse i went on 3mg daily as a maintenance dose.
None of that may be your course - but I wanted you to be aware it is possible and dont let it freak you out if it happens.

Good luck!!!

Hi. I was diagnosed with MC in February. I am 65. I had a full hysterectomy in September due to a diagnosis of precancer in my endometrium which turned out to be a small cancerous tumor. They got it all thankfully. 10 weeks later I went on a week-long cruise to the Caribbean and halfway through had lots of diarrhea. I thought it was food poisoning or giardia. When I got back it took a while to see a GI doc and then I did all the testing, (all negative), culminating in a colonoscopy with 3 biopsies. My diarrhea had been 6 weeks and the colonoscopy seemed to reset me, but I was diagnosed with microscopic colitis. I took Budesonide for 1 week and was not doing well so they told me I could quit. I was doing just fine, like my old self when I could eat anything and then bam, early May I had a flareup. I've been on the highly restrictive diet for too long now and am craving the old food. I've lost 12 pounds so far and can't afford it. I've always eaten healthy: no red meats or pork, fresh fruits and veggies as much as possible, and very little alcohol. I'm not a smoker. If anything I could exercise more but before this flareup I was walking a mile a day. I'm back on the Budesonide at a lower dose. I wonder...did the hysterectomy cause this? Did some weird bug in the Caribbean cause this? I seem to be coming out of this flareup, thankfully, but now I guess I add foods one at a time? Very depressed.