Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis

Do you know that feeling of relief when a doctor figures out why your body is behaving a certain way, only to say weeks later “how do I live with this?” I love fresh fruits. I love picking Mulberries off a tree and eating them. I use to eat blueberries and blackberries everyday. I love veggies. I love nuts. Oh pecans on a hot fudge sundae. Say goodbye to Dave’s Killer 22 Grain Bread? They told us we should eat fresh fruits, veggies, whole grains, etc… and I did and I love it! I’m angry. So now what? I need a LC mentor… friend, because just like my RA no one understands and I’m angry at their advice that has nothing to do with what I’m going through. Please… anyone out there?

Do you know that feeling of relief when a doctor figures out why your body is behaving a certain way, only to say weeks later “how do I live with this?” I love fresh fruits. I love picking Mulberries off a tree and eating them. I use to eat blueberries and blackberries everyday. I love veggies. I love nuts. Oh pecans on a hot fudge sundae. Say goodbye to Dave’s Killer 22 Grain Bread? They told us we should eat fresh fruits, veggies, whole grains, etc… and I did and I love it! I’m angry. So now what? I need a LC mentor… friend, because just like my RA no one understands and I’m angry at their advice that has nothing to do with what I’m going through. Please… anyone out there?

Hi all, in addition to the specialist at UVA I have a fabulous Gastroenterologist in Alexandria, VA who diagnosed the LC. She gave me an RX for Colestipol which worked wonders for controlling the diarrhea. I keep this handy for those extreme days, but have been diligently trying to maintain some type of normalcy (if there is such a thing). It’s hard to get to a doctor for an appointment when they are either an hour and a half or 2 hours away, but I am fine with virtual also. Yes, bidets are our best friends now and Costco has the best deals on them. It’s a shame that they are not standard in American homes. They are life changing. Keep your head up and will continue to pray for each of you. We now know more about each of us than many of our closest friends and family. But we have to be strong and support one another. Where are you ladies located?

I was diagnosed in Dec. 2024. I thought I had the flu, it was really bad. I got my bowels under control by having liquids only then slowly introduced some foods back and things got better and fairly normal, but my PCP said I should have a Colonoscopy anyway and glad I did bc that was when the MC was discovered, I am on Budenesodine as a taper medication. I will be on it for 4 months. I have an 3 autoimmune conditions that my doctor feels is the cause, but I guess we will never know really what caused it. I take omeprazole for GERD currently. My Gastro. Said that couldn’t cause the condition because I haven’t been on it very long and I only take 20mg daily. I am doing well and find Dairy to be a trigger but only certain dairy products. I see my Gastro, for follow up at the end of June. Not sure if I have to be on this all the time or if once your done do you stop altogether and see or is this drug forever?

And Stevia Leaf extract, which is actually a low FODMAP,

I have the sister version of microscopic colitis - collagenous colitis -

When you say you take Budesonide on and off, how long was your first course of it? Mine was 3 months, stepping down from 9mg a day to none.

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

What is the deal about Stevia leaf extract?

I was diagnosed 2 years with a biopsy during my colonoscopy,I’ve had 3 rounds of Budesimide,I’m now on the third round of one a day.when I go off of it ,I don’t do very good,go,see my GI doc in 2 weeks,to see if there’s any new treatment,I sure have to avoid a lot of things,coleslaw,high fiber foods,etc.if anyone has any good advice ,pass it along.Mine all started after two rounds of ATBs when I had tooth surgery.

Consider asking your GI about Budesonide. I'm 70 and was diagnosed with Collagenous Colitis (CC) 8 years ago. It is so similar to Lymphocytic Colitis that it is considered part of the Microscopic Colitis spectrum. I have kept a food log for 15 years, since my celiac diagnosis, so determined that along with no gluten, I'm sensitive to legumes, dairy, NSAIDs, and some other meds. I have no problem with seeds or fiber (I like psyllium husk), but I do best with a low FODMAP diet. I'd been able to control the CC quite well with diet, exercise, and managing stress until I got covid, long covid, and then Norovirus in 2023. Even then I just had to keep track of where the bathrooms were. Last summer a nephrologist put me on Lisinopril, and it turns out that ACE II, statins, and a number of other meds slap one's colon around, and the runs were off to the races. So...I was put on Budesonide 9 mg/day for 2 months starting on Thanksgiving, and now at 6 mg/day for a month, then 3 mg/day for a month. Budesonide is a designer corticosteroid; the effect is localized to slowing down and healing the colon (thinning the layer of collagen). In me, there were no side effects other than having a bit more energy and not losing weight. The relapse rate after stopping Budesonide is pretty high, so I will need to be diligent in my diet/exercise/stress management. https://www.ccjm.org/content/91/4/215#:~:text=First%2Dline%20therapy%20for%20microscopic,budesonide%20therapy%20can%20be%20stopped.