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

Posted by mpratto @mpratto, Nov 30, 2016

I have been fighting Lymphocytic Cholitis for a long time and it is getting worse. I really need some advise on how to live with this.

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Joanne Narna | @mothermary1 | Feb 27, 2023

In reply to @lighthouseceliac "Colestipol has help me tremendously." + (show)

That drug is for elevated lipids and says causes constipation. Maybe your post for someone else.
Thanks..Joanne

Joanne Narna | @mothermary1 | Feb 27, 2023

In reply to @astaingegerdm "@mothermary1 Welcome back Joanne! I’m sorry you are still suffering without relief. I’m taking Amitiza and..." + (show)

Hi, still not well. Motegrity was awful and Amitiza was too. I have such allergies to most meds. I don’t know if med itself or fillers. Someone needs to figure this out because I’m constantly sick or enduring horrible side effects. I don’t pass hard stools ever which amazes me with such long term constipation. It’s always tiny, soft or diarrhea and mostly nothing for weeks. I do not have incontinence at all. It’s also never as far as my rectum. It must take forever to get there because I’ve been taught to check myself and clear the way but never ever gets that far. I have had many many tests but it’s time to backtrack and do more but my Gastro doesn’t agree. I did smart pill but asked to swallow the camera in case something is missed in small bowel but my doctor thinks I’ve had all the tests since August 2020 that conclude, I have severe digestive motility issues. I see her Friday and I feel she will mention surgery. I won’t do it because I have had BM so I’m keeping my colon.
Thanks…Joanne

lighthouseceliac | @lighthouseceliac | Feb 27, 2023

In reply to @mothermary1 "That drug is for elevated lipids and says causes constipation. Maybe your post for someone else...." + (show)

It is used for microscopic colitis and works tremendously. It is a bile acid binding medicine, the amount taken can be played with until most symptoms are completely resolved. Budesonide kept me awake all the time so this has been perfect with no side effects for me.

lighthouseceliac | @lighthouseceliac | Feb 27, 2023

In reply to @mothermary1 "That drug is for elevated lipids and says causes constipation. Maybe your post for someone else...." + (show)

From Mayo:
Anti-diarrheal medications such as loperamide (Imodium) or bismuth subsalicylate (Pepto-Bismol)
Steroids such as budesonide (Entocort EC)
Medications that block bile acids (which can contribute to diarrhea) such as cholestyramine/aspartame or cholestyramine (Prevalite), or colestipol (Colestid)
Anti-inflammatory medications such as mesalamine (Delzicol, Apriso, others) to help control colon inflammation
Medications that suppress the immune system to help reduce inflammation in the colon, such as mercaptopurine (Purinethol) and azathioprine (Azasan, Imuran)
TNF inhibitors, such as infliximab (Remicade) and adalimumab (Humira), which can reduce inflammation by neutralizing an immune system protein known as tumor necrosis factor (TNF)

itsjeanne | @itsjeanne | Feb 27, 2023

In reply to @geegee1 "Lymphocytic colitis…what kind of diet is best?" + (show)

I happened to find a list of foods to avoid online -- I don't remember where, but I jotted down lactose, gluten, nuts, uncooked veggies and fruits, sugary drinks, alcohol, caffeine... As I mentioned, it has changed my life! Gluten-free things are very easy to find in the grocery stores. I used to assume that gluten- and lactose-free were just fads. Now, I'm a believer! If I eat apple sauce in the morning with breakfast, my day goes very well. Of course, BRAT food -- bananas, rice, apple sauce and (gluten free) toast work well. I used to live in fear of frantically needing a bathroom. Not anymore!

jlp2 | @jlp2 | Mar 1, 2023

In reply to @lighthouseceliac "I did and it sent me into a 3 day panic episode. Some find great relief..." + (show)

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...

lighthouseceliac | @lighthouseceliac | Mar 1, 2023

In reply to @jlp2 "Well, that's not good! I am sorry you had that experience. The info I saw about..." + (show)

Try it, I read the same things. It just might work for you. That’s the only way to find out.

tenpro | @tenpro | Mar 3, 2023

In reply to @lija "To answer your question, I am watching my diet, excercising, drinking more water and less coffee...." + (show)

Best probiotics are via prescription, Visabone. Pure, high dose and need your doctor to advise on quantity, no OTC is worth taking,waste of $$$$$

parker63 | @parker63 | Jun 4, 2023

In reply to @lija "I am joining as I was diagnosed with lymphocytic colitis at Mayo five months ago. I..." + (show)

I have taken this script, for many years, on and off. At the beginning I’d take a round of it, and symptoms would go away a year , before increasing symptoms. If I’m off the script now ,5 to 9 stools a day😕 any suggestions, get concerned about , side affects, Rheumatoid arthritis.

marthurs | @marthurs | Jul 26, 2023

In reply to @gingerm "Hello, I am new to this group. As a teen, I was told I had a..." + (show)

@gingerm

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.

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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.