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

Well, that's not good! I am sorry you had that experience. The info I saw about it was mixed results, so I thought I would ask on this forum to see if anyone had tried. I read that CBD oil can help with inflammation, so it seems like it might be worth a try, but I wouldn't want to have the experience you had, that's for sure! Thanks for responding...

To answer your question, I am watching my diet, excercising, drinking more water and less coffee. No creamer which really gives me problems! I eat lots of salads and vegetables. My doctor advises if I am going to eat them, to steam or microwave instead of raw! Even salads! (Well, I haven't tried salads that way yet!). No skins or rough vegetables. No lactose or histamine releasing foods for awhile or artificial sweeteners except Stevia. Use Mega Spore probiotic (50 billion). Eat chia seeds or psyllium husk and ground turkey breast instead of beef (no red meat). No bread, instead corn tortillas, rice, potatoes, or quinoa. Popcorn for snacks. This is info I received at Mayo. I have just started but am willing to try anything they think will help!! If anyone has any things that help them, please let me know!

I am joining as I was diagnosed with lymphocytic colitis at Mayo five months ago. I was prescribed budesonide 3 mg. It has helped. I have just returned to my doctor. He says I will probably need to take this for the rest of my life! I am now down to 1 cap. every other day.

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.

This is my life. Had a nissen fundoplication and hiatal hernia repair in December got c-diff from the hospital. Had 3 good weeks. Non stop diarrhea for over 7 months. In the meantime was diagnosed with Lupus (had a blood clot in 2016 was trying to get off blood thinners because Arthritis was so bad and I couldn’t take anything due to being on thinners). Finally had colonoscopy revealed lymphocytic colitis. I feel like I should have just kept eating tums my whole life and took my chances getting cancer instead of having the nissen. I’m sure having lupus and not being diagnosed till 47 didn’t help but that surgery feels like the start of all things bad in my life. I am forever changed and not for the better. Getting a hysterectomy in September. Who knows if that is connected to all the madness. Thank you for sharing your story.

I was recently diagnosed with lymphocytic colitis after months of diarrhea, discomfort and weight loss. I am immunocompromised with ypogammaglobulinemia “Specific Antibody Deficiency” , recurrent Esophageal Candidiasis, as well as a host of other medical challenges.
I was recently put on Budesonide / Entocort and am having a bad reaction to it. Initially, it caused much worse diarrhea with a weight loss of 7 lbs over 3 weeks. My blood pressure and pulse spiked - my cardiologist has had to quadruple my losartan to try to keep it down. In addition, I now have a yeast infection.
I'd really like to better understand what other possible treatments and life style changes there are for lymphocytic colitis.

Thanks.

I am also on Budesonide and am worried about side effects can you tell me about your experience on it thank you