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

No. Just go to GoodRx.com. Or SingleCare.com put your drug and strength and quantity and select it when it appears. Here is shows me the price at multiple pharmacies in the area. May be CVS or Walgreens or in A grocery store or a WalMart. I choose the one with best Combination of distance and price and call my doc’s office and ask him to call it in to(whichever pharmacy). Then I call pharmacy and tell them I have a goodRX code that is showing me (whatever price). They will check it from their side and whoever’s code is best wins 🙂
My most expensive med now is filled at a grocery chain that has a pharmacy inside. Never a line - no trying to sell you everything on the planet you don’t need. It’s my fave pharmacy now.

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 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.

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

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?

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?