Help with Lymphocytic Colitis

Hi mthom1217! I like you thought I was doing everything right in taking care of myself and eating healthy. But now the opposite is true. I was diagnosed in 2022 with lymphocytic colitis after a bout of dumping syndrome for 7 weeks. Talk about not wanting to think your spirit has already left your body, whew! I was exhausted from not being able to eat solid foods, having nurses come in to provide IV fluids, and worrying about my poor husband. During this episode is when I was diagnosed. I have to follow a strict diet of FODMAP AND gluten free. Never mind that much of these items cancel each other out which reduces what is really available. My heart goes out to you during this difficult adjustment time. I have waited 11 months to see a gastrointestinal doctor at UVA who specializes in LC and I am finally going to see him this coming Friday. Hopefully, I will be able to share some insight and his guidance in this very rare diagnosis with you. Will be keeping you in my prayers as you take this journey and pray for relief and renewed health.

Hi @mthom1217, I would like to add my welcome to Connect along with @riv2ga and others. You are not alone. @boy4 started another discussion here that you might want to scan through to learn what others have shared:
-- Is anyone dealing with lymphocytic colitis?
https://connect.mayoclinic.org/discussion/is-anyone-dealing-with-lymphocytic-colitis/
There are also other discussions and comments from members dealing with lymphocytic colitis. Here's a search link to the different discussions and comments if you want to scan through them while you wait for others to respond - https://connect.mayoclinic.org/search/discussions/?search=Lymphocytic%20Colitis

Oh thank you! I didn't realize there were specialists. I'm eager to find out how your visit goes. I'm going to back to my FODMAP book and clearing out the fridge and pantry. I just need to focus on my new norm.

I was just diagnosed with colitis (unknown type) and after a lifetime of high fiber diet, loving fruits and veggies, nuts, am on a very low fiber diet. It kills me to eat white bread and cook my few veggies to mush! Going on2-3 months with colitis at age 75, and not yet under control. Still eating Imodium daily. Doc put me on mesalamine which helps but I need a higher dose. We just installed 2 Kohler toilets with bidet in the seat- a Godsend for keeping my rear end clean…. Oh the maladies are endless when it comes to autoimmune diseases! I have 7 and wonder what is next. Hopefully I have my fair share and no more in the wings! I hope we all get some good relief! Diarrhea is the pits or should I say the shits?! Gotta keep a sense of humor to survive all this 😊

I'm right here with you. Diagnosed with Lymphocytic Colitis in July 2024. RA about 20 years ago. Imodium didn't do much for me but those Pepto Bismo melts are working. White bread is boring. Canned pears in water...ick. I bought a FODMAP cookbook so I'm going to start testing and keeping a log of what I can tolerate. Are you gluten free? If so is that helping?

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?

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.

I've been on Budesonide since July '24. It not only manages my LC quite well except for one day a month but it's also helping with my RA. I have no pain! GI said I can stay on it forever which I plan too. Currently 3 capsules a day but will work my way down to 2 along with low FODMAP diet. That's the plan anyway..

I am just west of Chicago. In reading the posts I fear stress is the one element of all this that is challenging to manage for me. My job over the years has gotten worse as there is more work piled on but no one to help me. I plan to retire May 2026 which in reality is just around the corner.

You explain very well. I had same experience. Budesonide Got rid of runs for me 5 years ago. Now it was my 5 year colonoscopy and ugh, i now have the runs. Also, have other auto immune problems. Just can’t get rid of the inflammation now matter what i try. Organic etc.