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

Hello, I am new to this group. As a teen, I was told I had a spastic colon, later, they started calling it IBS-D. In 2006 I was diagnosed with GERD, a hernia and the bottom "flapper" of my esophagus no longer worked so I underwent a Nissan Fundoplication. That procedure wraps a portion of your stomach tightly around the esophagus to keep the acid from going back into the esophagus. On the down side, I now have difficulty swallowing and must periodically have a balloon dilatation to stretch it back out. For that, I take Pantoprazole SOD 40mg twice a day. In October of 2016, after several months of watery, explosive diarrhea 10-12 times a day, a colonoscopy was done specifically to look for Microscopic Colitis. I was diagnosed with Lymphocytic Colitis. I was started on Budesonide 3mg caps x3 a day. That stopped the watery, frequent diarrhea but my skin became very fragile and thin. I was changed to Lialda 1.2Gm 2 tabs twice a day. These are horse pills and very difficult to swallow. It has slowed the diarrhea to 3-4 times a day, depending on what I eat but the bowel consistency is very soft to loosely formed. Silly me, I thought I was going to get back to relatively normal bowel movements. I have arthritis in my neck, back & hands. My hands started swelling and hurting. I couldn't make a fist. My internist sent me to a rheumatologist because I had a high-ish ANA test. More tests and more drugs. While I don't specifically have rheumatoid arthritis or lupus, she believes it is an autoimmune thing related to the Lymphocytic Colitis. She has me on Cymbalta 60mg for the pain, Predisone 5mg & Plaquenil 200mg twice daily for the inflammation. My hands are much better but I am having severe hot flashes. I have gone from taking 4 meds a day to all of this stuff. I was told to consider the Mediterranean diet but, because of the IBS, there are no leafy vegetables that I can tolerate, several fruits and nuts that are triggers as well. I had an endoscopy Monday to dilate my esophagus and take a few biopsies and my doctor (I regularly see his most excellent PA) told me that the way my bowels are now are my new normal. I am okay with that but I hate taking all of these meds. I worry what they're doing to my body. It's nice to find people who understand and are going through this as well. Thanks for listening.

Hello @gingerm, have you tried taking a probiotic? My mom.. just turned 90 was having the diarrhea problem for months and her doctor did all sorts of test and came up with no reason (she did have her gallbladder out years ago. So could have been something she was eating. I tried to get her to do a food diary to figure out if certain foods triggered it, but she would not do it.) I bought her Align probiotics and she was back to normal within a few days after taking them. I have been taking them myself since about 2008 after my husband's cousin suggested them. I had tried cheaper ones, but they did nothing for me. My son tried the Align and they gave him bad stomach cramps. Try and see what works seems to be the thing to do. Just adding yogurt (with live cultures) may be enough to help. My brain has gone blank on other food probiotics. Adding a probiotic may actually help you eliminate other meds you are taking. Diarrhea can be a side effect of many medications. You might check side effects of the ones you are taking and talk to your doctor about alternatives. I hope you find something that helps you.
Zaroga

I have. Probably 10 years ago my doctor suggested I try Align. He said he'd had patient's either swear by it or it didn't help at all. I used it for a year or so & then stopped as I didn't think it was helping. But I'm going to try it again. As my doc said, it can't hurt. Thanks for your help.

@gingerm you might need to try different probiotics. They all seem to have different ingredients. I tried the Member's Mark from Sam's Club and it did not work for me. There was another one that was suggested to me, but I cannot pull the whole name out of my brain. Super was the first part of the name. It gave me horrible stomach cramps, but others said it worked for them better than Align. Each of us came with unique bodies.. none exactly the same and what works for one person may not work for the next. Some people do well with just the probiotic foods.. like the yogurt, kefir and such. I'm not fond of yogurt, but did eat a lot of it when I was transitioning from a feeding tube to real food. Some people take prebiotics too, but I have not investigated them to see what they do. Please, do check out your medications to make sure they are not causing or contributing to the problem.

I am being treated for collagenous colitis with steroids. The doctor never gave me A diet to follow so I was just eating whatever I ate before. My diary I was not going away. Then I found out that you must eat only soft vegetables, no caffeine no sugar and I don’t know what else I could eat ?! I am a very thin person as it is and I am afraid that I am going to start losing a lot of weight. I need a diet and I can follow besides just rice, and stuff vegetables. Could you please help me? I am at my wits end. Ever since I’ve been eating these blanb foods I’ve been getting better but the diet I have is so limited that I know I’m going to start losing a lot of weight

I am not sure how much help I can give you. I have Irritable Bowel w/diarrhea as well as Lymphocytic Colitis. Because of the IBD, I can't eat a lot of green veggies - lettuce, asparagus, broccoli, artichoke to name a few. Beans, whole milk products (milk, ice cream & yogurt). Fried food, too much red meat the list goes on. Oddly enough, I am not skinny, although I was all through high school until my 50's. I try to eat smaller portions (so have to "lose" smaller amounts if it doesn't agree with me). I know it's frustrating but you really just have to use trial and error & give yourself a treat sometimes knowing the consequences. Hope this helps some.

@mpratto So sorry you are having trouble finding the right foods to eat. Can you contact your Dr's office and have him refer you to a dietician nutritionist? This way insurance should help cover the cost of visiting her.

After my surgery when they removed 1 foot of my colon. I had trouble eating for the longest time. It took quite awhile for my system to get back to normal. Everything I ate made me sicker than dog..

I went and saw a nutionalist ,and she gave me all kinds of options that actually worked. My local grocery store Publix has nutionalists. She even put together a shopping list. Went as far as, helping locate the food item in the store.

What a difference it made eating the right foods to help me heal better..

I wish you the best.

I have had Microscopic Colitis for over a decade now. Besides diet, taking Metamucil seems to help.

Welcome @riorita, and thanks for sharing your insight.
I thought you might also wish to view this discussion, https://connect.mayoclinic.org/discussion/microscopic-colitis-2ced1d/ about microscopic colitis on Connect.

According to this article from Mayo Clinic, autoimmune diseases such as rheumatoid arthritis or celiac disease may cause microscopic colitis http://mayocl.in/2bmyFqr ; here’s additional information from the National Institute of Health https://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/microscopic-colitis/Pages/facts.aspx

@riorita, do you also have an autoimmune condition?

Awwww ... I hear you. Perhaps it's time for a second opinion? Is that a possibility? When I took Entocort a few years back I recall it too a couple or three months before things straightened out.