How to manage microscopic (lymphocytic) colitis?

Dear Elaine,
I'm glad your GI is recommending Entyvio, I've have had no side affects or any adjustment period at all. The Entyvio has completely controlled my diarrhea, but I still have severe cramping and nausea once in awhile. It sometimes takes a few months before you feel better. I hope this answers your question.
Best regards, Carol

@piemonte the alternative to budesonide my GI chose was a low dose azothaprine which is used for chemo patients. I tried it twice from a few days to a week and kept throwing up. Let us know how your appt goes today.

@carolyne
Thank you!! I so appreciate the feed back on your experience. Elaine

@donnagail When I took my first course of budesonide after my diagnosis, I tolerated it well. My GI doctor worked me in because he knew I was in distress. He is brilliant and compassionate. We discussed treatment options. I will begin a 8 week tapering course of budesonide. At that point I will take a maintenance dose of 3mg/day. I will have a follow up appointment in May. If needed he said I can safely take a biologic called Entyvio. My doctor and his PA have been quite responsive. I message them through a portal and they get back to me the next day. I am so grateful for them.

@piemonte This is kind of where I am as well, after having my diverticulitis surgery, being back on Budesonide, and doing so well. I am taking 6 mg a day now, and would like to try taking just one. We haven't talked about Entyvio yet or maybe won't. Will have to see. My appointment is in April. I do like the Budesonide for my back pain, about 15 years of it - so might miss it for that. I just started a back stimulator for that pain. I'm not sure how old you are, I will be 72 in a few weeks. It's all hard on this old body. Hope everything keeps working out for you.

Had never heard of the book.
Amazing what we learn from each other!
Thank you so much for sharing!

@piemonte Interesting. My initial 90-day course of Budesonide worked great (when I was first diagnosed via biopsy) and I stayed in remission for 6 months or more. Then back on another 3 month round. Again, the same results. Seems the positive results lasted about 6-8 months before relapse. This time, when I decreased to the 6 mg after 30 days, I found it was not working. A new D.O. Gastro Doc said to go back to 9 mg for another month.

I am concerned that I may have to go to a biologic. I was tested and told I do not have celiac disease, that I shouldn't worry about what I eat, but that NSAIDS and alcohol may be triggers. Do biologics work if your disease is autoimmune?

@barb1954 I agree Margaret. Onions and garlic make a good meal. I took a test from a lab company in the UK that was mentioned in Wayne Persky's Microscopic Colitis book and found out I am highly intolerant of gluten, so I switch to GF bread, rice & corn spaghetti, etc. I even found GF Texas toast and GF wraps! I think all the diarrhea I had last year, caused malabsorbtion and has resulted in atrophy of my pancreas and duct dialation, a very serious combination. I am getting an MRI tomorrow of just the pancreas for the doctor to hopefully figure out what's causing the dialations which cases all the enzymes that digest fats, protein slip through the duct which can lead to more chronic diseases. This is a new GI, so I haven't even seen him yet. He pulled a CT scan another doctor ordered for a different reason and saw the atrophy result.

I am someone who loves hiking the hard stuff, mountain summits, and challenging backpacking. Everything put on hold because of MC and now may be on permanent hold due to the pancreas issue. It has basically remained my life as I am sure MC has slowed many down.

@piemonte How did your appointment with the GI go, Elaine?

Have you changed your diet? I had lots of success with the paleo diet. No gluten, no processes sugars, no sweeteners, no white flours, etc. Grocery stores are getting better at carrying GF bread, even Texas toast! GF corn & rice spaghetti, sandwich wraps, etc. If you haven't read Wayne Persky's books, Microscopic Colitis and the Microscopic Colitis Diet book, I encourage you to read it.

@donnagail thanks for the input. I have a colonoscopy scheduled for this coming Friday. I hope to have a conversation with my MD after to see what can be done.