How to manage microscopic (lymphocytic) colitis?

@neciern - hi, and welcome to Mayo Clinic Connect. I've moved your post here, to an existing discussion on the same condition, so you can chat with others:

- How to manage microscopic (lymphocytic) colitis? https://connect.mayoclinic.org/discussion/microscopic-lymphocytic-colitis/

Hoping members here such as @pichulita @barb1954 @cows1806 @donnagail and many others will join in and comment on whether your experience getting diagnosed with lymphocitic colitis, yet no changes in diarrhea on medication, plus now onset of significant abdominal pain, cramping, nighttime symptoms and severe right lower quadrant pain, etc., all seem typical or atypical. They may have thoughts on what else should be done to ensure you have the correct diagnosis.

neciern - what symptom or symptoms are bothering you the most lately?

@neciern Do you know the 'pattern' of your ANA results? I've had some of the same issues as you have had, but not as much. There is a pattern to the ANA test that will help with diagnosis. Mine was a homogenous pattern, which I believe is SLE (Systemic Lupus Erythematosus), but there are several other patterns that can be quite different. A specked pattern can indicate SJD (Sjogren's Syndrome)or connective tissue disorders as an example. In those examples, a rheumatologist might be able to help you and could work alongside your gastroenterologist. Sometimes we need a patient advocate to help us along and organize these complicated things.

@lisalucier
The acute pain, increased cramping and fatigue are most bothersome right now. Despite massive dietary reductions, these symptoms are worsening over my baseline lymphocytic colitis. The calprotectin of 582 aligns with this. I am most concerned about not repeating the small bowel biopsies (the original tissue taken was somehow lost in transit) because it seems that is a critical diagnostic element here. I have a capsule endoscopy scheduled for July but this diagnostic process has been ongoing since March and I’m wondering if I need to push back on the decision not to repeat the EGD for tissue samples

@veryoldhippy thank you for your reply. Yes, my pattern is speckled and I have several other auto antibodies that are positive. My original rheumatologist dx me with MCTD but when we moved and I had to get a new rheumatologist, he told me my symptoms were “psychosomatic” and only related to my lymphocytic colitis. Honestly, it’s been a very discouraging process.

Any physician that says "psychosomatic" is most likely unable to make a diagnosis, too lazy, incompetent or just not wanting to learn because they already know everything. You have the right to choose a different rheumatologist and let them know why you are doing so. The current one should be fired. I've had to do that, too, with my rare diagnosis and it took quite some time to get treated because of doctor's attitudes like that. Meanwhile, the patient is in pain, ill and confused! It isn't right, but it's another example of our broken system. If you have MCTD, there are treatments that will help you! Learn as much as you can, advocate for yourself and find a physician that's a partner, not god/dumb patient.

Neciern: I am currently controlled with budesonide 3 mgm daily, everyday. My concern is the affect the budesonide has on my glucose as it puts me in a "fight or flight" state causing me to release more glucose. I tried coming off the Budesonide and trying Entyvio infusions. but that is when my diarrhea got totally out of control. So I ended going back on Budesonide for now. Hoping to get approved for a second anti immune agent and try again. I am very sorry to hear of your issues. There is a MD at Mayo that has specialized in Microscopic Colitis and has written and published on this subject. He might be someone to contact for a second opinion.
At the Mayo Clinic, one of the most recognized experts in microscopic colitis is Darrell S. Pardi, a gastroenterologist at the Mayo Clinic Rochester. His listed areas of focus include microscopic colitis, collagenous colitis, inflammatory bowel disease, and related digestive disorders.
Other Mayo Clinic physicians who specifically list microscopic colitis as an area of focus include:

Stephanie L. Hansel (Rochester, Minnesota)
Mike G. Kattah (Rochester, Minnesota)
Aaron L. Hecht (Rochester, Minnesota)
Navreet M. Chowla (Rochester, Minnesota)
John Mark B. Gubatan (Jacksonville, Florida)
Jami A. Kinnucan (Jacksonville, Florida)
Gui Piovezani Ramos (Phoenix, Arizona)
Sid Singh (Phoenix, Arizona)
If you're seeking a physician with the strongest national reputation specifically for microscopic colitis, Darrell S. Pardi is often considered one of Mayo's leading authorities in this condition and has published research on microscopic colitis.
For appointments or referrals, you can use the Mayo Clinic gastroenterology appointment page:

Mayo Clinic Appointments

If you'd like, I can also help identify which Mayo campus (Minnesota, Arizona, or Florida) might be most appropriate based on where you live and whether you're seeking a second opinion, diagnosis, or treatment.