CLL and Lymphocytic colitis

[Bluzi]

Hi, was diagnosed with CLL last November. Recently been diagnosed with Microscopic Colitis otherwise known as Lymphocytic colitis and suffer greatly, so my consultant tells me there is no link. Just find it a little strange tbh. Anyone else have similar problems? X

[Classicaljazz]

The following is from the Cleveland Clinic Website:

What is lymphocytic colitis?

Lymphocytic colitis is a type of microscopic colitis, which is a type of inflammatory bowel disease. Inflammatory bowel diseases are chronic diseases that cause ongoing inflammation in your intestines. Colitis means inflammation of the large intestine (colon). Microscopic colitis is colitis that can only be seen under a microscope. Scientists recognize the different types of microscopic colitis by analyzing the cells in your intestinal lining.

Lymphocytic colitis is characterized by an abnormally high density of lymphocytes in your intestinal lining. Lymphocytes are a type of white blood cell. When they show up in large numbers, it usually means your immune system has been activated to fight off an infection. That’s what inflammation usually means, too. With lymphocytic colitis, there’s no infection, but your body acts as though there is.

Is lymphocytic colitis an autoimmune disease?

Most scientists believe so. They believe all inflammatory bowel diseases are. Autoimmune diseases cause chronic inflammation in different parts of your body in the absence of any infection. They happen when your immune system attacks your own body’s cells, apparently mistaking those cells for infectious agents. Autoimmune diseases may be partly determined by genes, and partly by environmental factors.

How serious is lymphocytic colitis?

Lymphocytic colitis causes chronic inflammation in your colon, which is the end part of your GI (gastrointestinal) tract. This is the last leg of the journey your food takes through your digestive system, where food waste is gradually condensed into poop. Inflammation in your colon can interfere with this process. With lymphocytic colitis, the most typical result is chronic, watery diarrhea, between five and 10 times a day.

Frequent, urgent diarrhea can certainly affect your quality of life. Fortunately, most people only have periodic symptoms. While lymphocytic colitis is a lifelong condition, it can go into remission for long periods. When it does flare up, most people find it manageable with medication and diet. It’s not likely to cause serious or permanent damage to your colon, as other types of inflammatory bowel disease can.

Who does lymphocytic colitis affect?

It can affect anyone, but it becomes more common with age. It rarely affects children and most people are diagnosed after the age of 65. It’s about twice as common in women or people assigned female at birth (AFAB) as in men or people assigned male at birth (AMAB). It’s also more common in people who smoke tobacco, and these people tend to develop lymphocytic colitis earlier than others, by an average of 10 years.

Up to 40% of people with lymphocytic colitis also have another autoimmune disease

What are the symptoms of lymphocytic colitis?

Lymphocytic colitis changes the cellular composition of your large intestinal lining (mucosa). This causes frequent, watery diarrhea — typically between five and 10 times a day. About half of people report cramping and abdominal pain with it. Severe diarrhea can also lead to fecal incontinence — difficulty holding poop in — and it may cause dehydration, unintended weight loss or fatigue as side effects.

Some people also experience inflammatory symptoms in other parts of their bodies. This is typical with chronic inflammatory diseases. In fact, it’s fairly common for people to have more than one autoimmune disease diagnosis at a time. Common secondary symptoms in people with lymphocytic colitis include joint pain and stiffness (arthritis), eye inflammation (uveitis) and skin rashes (psoriasis).

What causes lymphocytic colitis?

Chronic inflammation in your colon causes cellular changes that lead to chronic diarrhea. But scientists aren’t sure why chronic inflammation develops in the absence of infection. Most believe that it involves a combination of factors. Some people may be genetically predisposed to develop it, like other autoimmune diseases. But in addition to that, some environmental stress factor probably triggers it.

Possible triggers include:

A previous bacterial or viral infection in your gut.

Food or pollen allergies affecting your gut.

Frequent use of certain medications, including aspirin and ibuprofen.

Smoking.

How is lymphocytic colitis diagnosed?

By definition, lymphocytic colitis can only be diagnosed from a tissue sample examined under a microscope. A gastroenterologist will take the tissue sample during a colonoscopy. In this procedure, they’ll examine the inside of your colon with a flexible instrument called a colonoscope. They’ll take multiple tissue samples (biopsy) through the colonoscope and send them to a lab for analysis.

If you have lymphocytic colitis, your colonoscopy will appear normal, but your biopsies will reveal inflammation with a high density of lymphocytes. If you have another condition, it’ll probably be visible during your colonoscopy. Your gastroenterologist will probably try to rule out other possible causes before testing you for microscopic colitis. They may order blood tests or poop tests first.

Management and Treatment

Medications may include:

Over-the-counter (OTC) antidiarrheal drugs, such as loperamide or diphenoxylate.

Bismuth Subsalicylate (Pepto Bismol®) several times a day for a few weeks.

Budesonide, a corticosteroid that’s absorbed in your colon, for inflammation.

Bile acid sequestrants (colesevelam, colestipol), which can treat certain types of diarrhea.

Outlook / Prognosis

Is lymphocytic colitis curable?

Strictly speaking, it’s not curable because it can always come back. However, it can go into remission, which means the diarrhea and inflammation go away. Many people see their symptoms resolve almost completely over the course of a few years. In some people, remission appears to happen spontaneously. In others, it happens after figuring out the treatment, diet and lifestyle changes that work for them.

Living With

What type of diet is best for lymphocytic colitis?

Your doctor may recommend that you avoid foods that commonly trigger diarrhea. You can test these foods individually if you’d like to see if they trigger yours. You may also have particular food sensitivities that aren’t on the list. Take notice of how your symptoms change when you add or remove certain foods. (An elimination diet, such as the Low-FODMAP diet, can help you isolate your food triggers.)

Common foods to avoid include:

Alcohol.

Caffeine.

Artificial sweeteners.

Dairy products.

Gluten.

High-fiber foods.

High-fat foods.

Lymphocytic colitis is a chronic disease that develops relatively suddenly and late in life. It’s also somewhat obscure and not as well understood as other inflammatory bowel diseases. This can be a bewildering diagnosis to receive, especially if you’ve never heard of it before. But the good news is that it’s usually a manageable disease. With treatment and self-care, it can even go into remission.

[LeoPa in reply to Classicaljazz]

Great info!

[jerrythecat in reply to Classicaljazz]

Thank you for this very informative post!

[Bluzi in reply to Classicaljazz]

Thank you so much for all the information !! That was so very helpful xx

[ViPOR]

thank you so much for this.. I have had two CAR Ts and one VIPOR trial for aggressive Follicular NHL. And Ibrutinib trial before plus multiple chemos earlier these past 12 years.i I am in a 40 month CR thanks to NIH ( Bethesda Md ) VIPOR trial but this past year, I started with massive bouts/ day of watery diarrhea..Idiopathic cause and had Upper GI, colonoscopy ( both neg for polyps or cancer) but Colonoscopy doc saw a lot of inflammation so he took biopsies and all neg. But he said looked like a chronic gastritis..GI specialist then did multiple stool samples and testing and found my stool elastase test was 101 ( 1 point above severe for lack of pancreatic enzymes)..a routine post VIPOR trial also showed a possible stricture and ovoid cyst at end of my common bile duct, plus my weight went from145 lbs down to 103 lbs from all the massive watery diarrhea and I am as way to thin from not absorbing fat soluble vitamins and any food. It has been a nightmare with up to 10 watery diarrhea or more a day....loperimide not helping at all. I have been diagnosed with EPI / insufficient pancreatic hormones so put on CREON enzymes ( 3 );each meal and low fat diet.... Enzymes have done nothing to solidify stool So GI doc just put me on Xixafan pill to try to stop the severe diarrhea and gastritis like inflammation. It has helped me more than anything else and apparently works only in GI tract. So am trying that now..I was allowed to join this wonderful group even though I have aggressive Follicular lymphoma hx because when I was on my Ibrutinib trial many of you had also taken it,too! So we had a lot of terrible leg cramps in common. Your input really helped me so much..Now I also se your posting about Lymphocytic Colitis and that is right up my alley too! My CAR T at NIH in Md was a First in Human CAR T trial in 2016 being done to test for safety in incremental dose of my own re engineered T cells being given back to me..I was second person on their trial..and I got a 3 year CR the first time with only low B/P at night as my only side effect..so wheni relapsed in 2019, as per original contract I was allowed back on same trial after all testing and new biopsy showed that my FNHL had not transformed into any other type of lymphoma.it had not, so allowed back in trial and second time in 2019, I was given 10X stronger dose of my original and frozen for past 3 years re engineered T cells! This second CAR at time, though I only got a 6 month CR even though this time I had 5/+days of 103+ fevers..presently I still do not have or make any Bcells left so am immune suppressed. I do get Gamunex C IVIG infusions every other month that is donated blood component that provides me some greatly needed immunity plus my T cells help out to. But now have still this new gastritis or microscopic bacteria that is awfullly debilitating so your post here about lymphocytic colitis is something for me to ask my GI team about..sorry this is so long a post but wanted to give you my back ground…Meanwhile, best wishes for cures and good health! THANKyou!

[Phil4-13]

Bluzi, sorry for that miserable diagnosis your doctor gave you. Fortunately, our doctors have a "treasure" chest of newer medicines to help us(yep, me, too) to manage easier and better living. I see my gastro doctor "again" next week. For many years I've had colitis. I've had to accept that sometimes I need to wear protection. There are days I simply feel that my colon is not going to allow me control. I have not received your diagnosis, but my symptoms closely mimic lymphatic colitis. I'll bring it up at my next visit. For stomach pain I take dicyclomine 10 mg (generic for bentyl 10mg). For those mornings of repeated movements with great stomach discomfort, I take 1/2 Imodium tablet. So far, I've been able to keep from being embarrassed. I'm 74, still active and working. I wish you the best care and comfortable results from treatments. I'll post after my visit on Dec. 12th, what my gastro doctor says. 🙂 Sandra

[JudyB54]

Interesting post. I never heard of lymphocytic colitis. I was tested for microscopic colitis due to chronic diarrhea in early 2018- the CBC at that time revealed high white cells and lead to my CLL dx. My gastroenterologist called it functional diarrhea and I have been on Metamucil 2x / day ever since. I only have occasional issues, but it's been quite a while since I had watery stools. I've often wondered if there was any connection to my CLL, mostly because of the timing of both being dx at same time.

[jerrythecat]

I too have CLL since 2017. I too have Lymphocytic colitis which was dx 3 years later through colonoscopy and biopsy. Same as you, all docs say unrelated. I can tell you my experience with LC was remarkable, and at the same time manageable. After many food and drug elimination trials, I found that ibuprofen and any NSAID trigger the diarrhea and LC symptoms which were urgent, 5 to 10 times per day. The doc clued me in to the NSAID trigger. I eliminated my daily Celebrex and/or ibuprofen for arthritis and improved markedly. It took a very long time for symptoms to subside, literally weeks. The triggers of this disease are very hard to figure out, and changes do not always happen overnight. Surprisingly, I find that turmeric supplements trigger my diarrhea (the opposite of what turmeric is touted to do). I had forgotten to take my supplement for about a week, and coincidentally noticed that the diarrhea had subsided. I tried FODMAP diet, mostly eliminating gluten, but there are many other details to the FODMAP diet. It isn't just eliminating white flour, though that is one of the biggies. Along with onions and apples, go figure. It made no difference. I am currently in remission (3 years later) and don't have urgent embarrassing trips to the bathroom. Maybe the remission was coincidence? Maybe it was eliminating the turmeric, who knows? I did not take the often prescribed budesonide. I felt like I'd rather live with diarrhea than the effects of that drug. I actually suffer with occasional constipation at this point. Seems that for me LC makes the colon swing drastically in both directions. Hang in there.

[Astro617]

Yes, I have been diagnosed with same in 2013. I was also told they weren't related. I had several years of eating normally, but then I had a flare up 2 years ago and it's still giving me fits. I'm managing it with a low FODMAP (very limited) diet and right now I'm taking one Florastor capsule a day. At it's worst I was taking the full dose of 4 capsules. (I've also had good luck with Align, a different kind of probiotic.) I am cautious with probiotics and try to keep use to a minimum. This condition is frustrating because I feel I'm probably not getting the nutrition I really need. I was recently diagnosed with osteoporosis. And while there are other factors at play, I think nutrition has also played a part in contributing. Good luck to you Bluzi.

[CoachVera55]

Wow I just naturally assumed both conditions, CLL & Colitis went hand in hand. I remember my original CT Scan in 2012 that the technician in training was so baffled with the number of lymphocytes within my digestive tract. So from that point on I knew it could be related to all my food allergies; Tree Nuts, Shellfish & some fruits, let alone my drug allergies; Contrast Dyes, PCN, Erythromycin & Morphine.

I was careful to monitor how I felt when I introduced new foods into my body. When I went into stage 4 CLL after 13yrs 8mos of W&W, digestive issues is what started even before the sinusitis. I went into a 100% organic plantbased whole food diet, RAW (dehydrated foods @118 degrees or less) & Juicing to prep my gut for food. It seems to work too. Its a lot of work eating everything from scratch but I have the time, its less expensive & I pace myself with the energy.

I just did an endoscopy & colonoscopy Dec 5th with 7 areas biopsied. The initial findings were acute gastritis & chronic gastritis w/o bleeding, esophagitis, unspecified plus 1st degree hemorroids. No polys & I still hate the prep.

I take a pre & probiotic, no meat, no dairy, minimal processed foods, no sugar & it all helps. Usually 2-3 formed BMs daily. I start my day with 50ml of Lemon Water, Veg/Fruit Juice & Dandelion tea with Moringa Supplement. A Raw Meal of Salad, Soup, Smoothie or Shake then a Big Plant based Meal & new bad habit of Granola with Cashew Milk at night. #GODSPEED🙏🏾