Anybody diagnosed with microscopic colitis?

@ndough, here is a basic summary of Collagenous Colitis (MC)

The strongest evidence is for collagenous colitis

A major genetic study examined 804 patients with histologically confirmed collagenous colitis and compared them with controls. It found three HLA alleles associated with increased risk:

HLA-B*08:01
HLA-DRB1*03:01
HLA-DQB1*02:01

These are all part of the HLA ancestral 8.1 haplotype. The study also found a protective HLA allele, HLA-DRB1*04:01.

This matters because HLA genes help the immune system recognize and respond to substances in the body and gut.

@ndough, yes, you are 100% correct. However, there is a big difference between them. Generally, Lymphocytic colitis heals after one treatment of budesonide and is not known to recur once treated. Now, Collagenous colitis is a different story. Approximately 50% of patients relapse after Budesonide treatment. Of those 50%, about 20% go on to need additional treatments and potentially develop other chronic GI issues.

@szelisk There was only one reference from 2016 indicating that LC doesn't show a genetic component(s) and it was not the research focus for that paper, so not enough to rule out HLA or other genetic associations for LC. LC is considered by some an earlier stage of collagenous colitis (CC) (both are microscopic colitis). When my MC was diagnosed 10/2017 there was almost no peer-reviewed research on CC (still not much). I have celiac (17 years) with HLA-DQ8 0302, so a likely link. The celiac was probably triggered by H1N1 followed a few days later from the stress of some guys trying to murder me. The GI that did the celiac scopes and biopsies was 6 mo after the start of celiac so minimal damage to intestinal villi; he screwed up because he was convinced that I didn't have celiac due to absence of anemia, and decided I instead have diverticulosis (still negative). He only had me off gluten for a week and just one small intestine biopsy. So, it took CC to convince the doctors that, yes, I have celiac. Having HLA-DQ8 wasn't enough because around 3-8% of the population has that. We really do need to advocate for ourselves. I'm a 72 yo retired research scientist. As an aside, the GI did find rather nasty gastric reflux damage to my esophagus that I didn't know I had. It was clear on the endoscopy 5 years later and the GI and nurse were surprised that all I did was go gluten free (and sleep on my left side more).

@szelisk If you don’t mind my asking, how old are you? The reason I ask is because Microscopic colitis was first discovered in the mid-70’s, when the first sub-type (collagenous) was identified). The second (lymphocytic) was identified in 1989. I point this out because the study you refer to is not a major study. It is only one study. Microscopic colitis went for decades after it was identified still being relatively unknown to many doctors, mainly because it’s associated with women. I’ve had it for 35+ years. I am now in my 70’s. I have followed these “studies” and not much research until fairly recently has been done, most still hypothesis. I have collagenous colitis but it is not anywhere in my family history- near or far.

@ndough, I'm 62 right now. I was diagnosed with Celiac when I was in my mid-30s and MC in my 40s. Unfortunately, I seem to develop unique issues.

Budesonide is a designer steroid with a more localized effect; unlike prednisone and some others, so one generally has to be on it for many months for symptoms to rear up. I was on it for 15 months and stopped because the skin on my forearms was getting a bit thin. I've been off it for 5 months without flares. My collagenenous colitis (CC) was diagnosed about 9 years ago but controlled with diet (fiber, mostly Mediterranean, GF due to Celiac). I also take turmeric supplements with meals, around 3 gm/day; there isn't much research on if that helps or hurts CC, but my GI tract tolerates it and the anti-inflammatory properties may help in preventing flares. The main factors that I have found in controlling CC are managing stress, and getting enough rest/sleep.

@kayabbott Did your arms improve after you went off the budesonide? I have that issue - really bad. I don't know if it's something to actually worry about, but my 4 yr. old grand daughter says I'm old when she see's my arms 🙂 It's doesn't really bother me, except when I get a scratch- (i garden) it could bleed, and then I really get marks - can this lead to a worse problem after a while. I've been on budesonide for about 2 and a half years now. I only take 2 a day, and occasionally 1 a day. When I take 1 a day for a few days I start feeling really off - usually end up taking an anti-nausea med. It's a balancing act, isn't it!?

@lpockat Mine was controlled after a few months at one 3 mg/day. At 15 mo I tapered that off to one every other day and then every third; half life of Budesonide is only a few hours so shouldn't make a difference, but ehh. It took about 2 weeks for the skin on my arms to thicken, along with applying a thick hand lotion to arms after showering. Some of the neoprene and latex arm sleeves help with gardening; fewer bruises and scratches. Consider checking with your GI to see if there is anything else that can help with your symptoms. My CC was triggered mostly by stress and poor sleep; I already was on a restrictive diet with gluten free (celiac) and other intolerances. If you can find a nutritionist knowledgable about collitis, that might help too.

@kayabbott I forgot to mention that the Budesonide I take for the CC also helps the back pain I have. I've had 2 major back surgeries, a metal cage, spacers between vertebra, a medtronic device with battery pack implanted, and three fractured vertebra that had concrete injections a year ago. This is an ongoing 15 year problem (I'm 72) The Budesonide, I discovered, really put a dent in the pain from my back when I was on three a day. Not sure I want to quit completely. Think I'm going to try 1 and 2 pills every other day. Trying to stay away from taking Motrin. I feel like this is a game I have to figure out. I think my CC was caused by a medication trying to get rid of MRSA. Right on the info sheet, it said it can cause colitis!! I had trouble right away. I don't think the Dr.s believed me. I've been pretty good for over a year which also involved surgery to take out a diverticulitis section in the colon. That was really making me sick- and I actually fired the Dr. that kept putting off taking out that infected area. I did it right in the hospital- in front of nurses! I was hospitalized three more times before I was healthy enough to do the surgery! We do have to take charge and stand up for ourselves sometimes! Thank you for taking the time to send me the message.

@lpockat You have had a tough go of it. BTW, spandex, not latex arm protectors. My doctors recommended staying away from all NSAIDs, including Motrin, with CC. They said Tylenol and other acetaminophrens. I'm 72 as well. We do need to advocate for ourselves.