Anybody diagnosed with microscopic colitis?

@donnagail I hear that!!

@donnagail Were you diagnosed with MC without a colonoscopy? The only way to diagnose it is through biopsy (several different sections) of your colon) to know if you have it. My GI even gave me the photos of mine. Seriously (ick). Wouldn’t the pancreas affect the upper GI (stomach, esophagus) more than your lower GI system, like the gall bladder does? I honestly don’t know.

@ndough I have had multiple coloniscopies that confirm it. I dont want to have them anymore. Its always the same. MC but no polyps.

Pancreas and adrenal glands work together. Like one pulls, the other takes. The adrenal glands produce cortisol. Budesonide long term suppresses the production of cortisol. If you wean off too quickly, you can go into adrenal crisis, like I did, and it can be fatal. The pancreas processes the fats, proteins, and I think sugar. If those enzymes aren't present, it can turn into diabetics 1 or 3c. My problem is not just the atrophy of the pancreas, but a widening of the duct and the enzymes needed to digest the food is most likely slipping through. There may be a blockage causes the widening, a stone or something else, which needs to be assessed to keep it from getting worse. I have a feeling the new GI will put me on a prescription strenght enzyme, PERT. I dont yet understand why that wouldn't slip through the duct, too.

We could all be more knowledgeable as the doctors at some point. 😆

If the steroid that the MD wants you to take is Entocort or Budesonide(generic) then I can tell you that I have been on it. the Steroid seems to be well tolerated, greatest effect is on the gut and I did not gain weight on it. I had been on it for about 18 months. the only reason I wanted to try something else for Microscopic colitis was that it was causing my sugars to go up and making me Pre-diabetic. I then went on Entyvio without any improvement. So I am going back on Budesonide for a couple of months while I travel. then when I get back I will discuss other options that might not affect bad sugars.
As a side note if your insurance doesn't cover Budesonide try getting it through Good RX site .

@barb1954 The only thing I suggest is after you are on it for a while, have a bone scan.

@donnagail Over 35 years of MC + I can’t even tally up the number of colonoscopies (none with polyps or abnormalities), I’m with you as far as never ever wanting to have another one.

I did not know that about the pancreas, thanks for the info. Do you have your gall bladder? If so, were you checked for gall stones?

@ndough I haven't had the gall bladder removed. I did ask AI what could be causing the duct widening. It did mention a stone. It could also be genetic, age or alcohol abuse. The latter probably not. I like my wine but dont abuse it. Now, that's off the table, too. AI said its like poring gasoline over my pancreas.

See if you can get a CT scan of your gall bladder. It sits almost on top of your pancreas and if it’s full of stones, well….

@ndough Do you think it would show up in the mri of the pancreas? I can ask them about that. I did manage to get to see a PA this coming Thursday before my doctor appt in April. I will bring that up. Thanks for the tip!

After the worst months and then years of my life with
* diarrhea onset May 2022
* after 10 days stool sample revealed Yersinia (associated w-undercooked pork and many people have it on board). Got antibiotics anyway and it not only persisted it got worse.
* New stool sample Sept 22 says the dreaded C-Dif. So new antibiotic for that.
* Nov22 new GI Doc and colonoscopy reveal collagenous microscopic colitis.

So six months after first symptom- 6
months of the kind of diarrhea where you not only can’t leave the house, you can’t be more than 25 ft from the Loo, I finally had a miraculous cure with Budesonide after a 3 month program.

I have since relapsed twice, was put back on a mini program and am now on lowest dose as maintenance program - 3.5 YEARS after initial symptom.

There are multiple known medication triggers. I stopped chronic use of NSAIDs and PPIs. As someone with RA and gout, I would give my kingdom for a freaking dose of ibuprofen. But not in the cards.

I can describe it dispassionately now. But it has been absolutely dreadful. I have a 3 yr old Grandchild in another state that I have never visited because I can’t bring myself to fly. .

I hope you never need to experience any of that