Early lymphocytic colitis?

[grenouille]

Hi everyone. I haven't been able to find much info about LC and am curious if anyone experienced symptoms similar to mine prior to their diagnosis.

About a year ago, I started experiencing persistent diffuse right-sided abdominal pain (both LRQ and below the right rib cage which sometimes extended to flank or back), a lot of nausea, weight loss, fatigue and extensive food intolerances. In June 2012, I had an upper endoscopy and colonoscopy. UE showed hiatal hernia and mild gastritis. According to GI doc, colonoscopy showed microscopic cellular changes that - in the context of complaints of chronic watery diarrhea - would warrant a diagnosis of lymphocytic colitis. However, I have not had chronic watery diarrhea. In fact, I was diagnosed with IBS - Constipation when I was 16.

More recently, my bowels have become more unpredictable and my bowel movements more varied. Over the past 9 months I've had about 10 episodes of sudden violent diarrhea, almost all occurring in the middle of the night. I'll be awakened by severe right sided abdominal pain, then I'll literally feel like a "pop" in my right abdomen and then it's a race to get to the bathroom. It's insane. But other than that, no diarrhea. So the doctor said we're going to put these results on the back burner for now unless and until my symptoms change. He said the results of the biopsy may indicate that I *will* develop LC at some point, but there's no way to know.

I still get intermittent right-sided abdominal pain that I'm perplexed about. Doc thought it might be my gallbladder, but HIDA scan was normal as have been blood tests for liver, pancreas, spleen, kidneys etc. Over the past couple of days I've had this dull pain (sometimes burning) in my upper/mid right abdomen again (also felt in various spots along my back) and I'm wondering if it's my colon? I've been gluten and soy free for a year, limit my dairy to a bit of jarlsberg or goat cheese, and eat mostly organic, so my diet is pretty decent (though there's still room for improvement). I also walk for 60-90 mins/day and try to do yoga regularly which definitely helps. My brother thinks my healthy lifestyle is the reason I don't have watery diarrhea. But I'm also under a ton of stress and my hiatal hernia has been causing me severe GERD out of the blue, so who knows.

I will also mention that in conjunction with these GI issues, I also developed some unexplained joint swelling (manubriosternal and sternoclavicular joints - appeared to be cartilage inflammation, as well as one episode of swollen index finger joints). Was concerned there might be something autoimmune going on (Rheumatoid arthritis and multiple sclerosis in the family), and I've read LC is thought to possibly be autoimmune, so I was wondering if the co-occurrence of these symptoms might be related. All bloodwork for autoimmune and Lyme have been normal to-date.

Anyway, I guess I'm wondering whether anyone with LC experiences right-sided abdominal/back pain, and whether anyone with LC DOESN'T have watery diarrhea?

Thanks!

 

[David]

Hi there and welcome to the community. I have been diagnosed with Lymphocytic Colitis but do not have chronic watery diarrhea. Sometimes? Yes. Chronic? Definitely not. Most of your symptoms sound very similar to mine in fact.

HOWEVER, what you describe as a, "pop" and THEN a race to the bathroom has be concerned. That sounds to me like you're possibly experiencing partial blockages. I realize you had a colonoscopy, but have they done a CT, MRE, or small bowel follow through at any point during this?

All my best to you.

 

[grenouille]

Hi David,
Sorry for the much delayed reply! Thank you very much for your response. I think your point about my symptoms possibly indicating a partial bowel blockage make sense, although the doctors have never followed up on it. I had one abdominal CT last year (normal) in addition to the colonoscopy, but because these bouts of nighttime diarrhea are so unpredictable, it's difficult to get a scan at the right time to detect such a blockage.

I have recently started to have diarrhea more frequently. Twice this week I've had nocturnal diarrhea (once with near-vomiting...it was a full body experience!) and I've had a little bit of diarrhea during the day as well. So I'm wondering if it's progressing.

Anyway I have one other question. Does anyone with LC have problems with their tongue/mouth? Ever since these stomach and bowel issues started, I have developed seriously bothersome issues with my mouth. It's either super dry or I have foamy saliva or mucousy saliva. The base of my tongue feels like it's too big so I'm getting friction irritation on the sides of my tongue and toward the back. My tongue is always pale and at time it gets deep painful fissures. A year ago, my tongue was pink and normal and I can't seem to get my mouth back to its status quo. It seems clearly tied to the GI issues, but the doctors dismiss it every time I bring it up. Anyone else experience this?

 

[David]

I haven't had anything like you describe with your mouth, no

Are you on any medications or trying any sort of diet?

 

[Beach]

I never experienced the pain, or dry mouth you mention, but in the past can remember troubling looking fissures on my tongue. My dentist didn't think it was something to be concerned about, I recall.

I'm not sure what caused this problem to go away, but thinking about it do not recall seeing this issue since changing my diet, eating paleo/SCD, taking vitamin D3, etc.

 

[grenouille]

I'm not on any medications right now. I do have a hiatal hernia and GERD so it's also possible the mouth issues are related to reflux. I have an EGD procedure scheduled for next week so I guess I'll find out whether the reflux is affecting my esophagus. If so, it's likely the mouth issues are related to that. I had my vitamin D tested last June and it was very low normal, so I could certainly benefit from taking a supplement. In terms of diet, it's healthy but I sometimes wonder whether it's the right diet for my issues. I eat a lot of raw carrots, celery and zucchini with hummus, and frankly I'm not sure the vegetables agree with me. I find steamed veggies to sometimes be way too filling/bloating for me. Those three raw vegetables are the only ones that don't kill my stomach. I get my fat from avocados or coconut butter or goat cheese, and get my protein primarily from hemp seeds, quinoa, beans, pumpkin seeds or cashews. Occasionally I'll have salmon. When my stomach is really bothering me I usually stick with rice cakes or baked lentil crisps or something that doesn't have a lot of fiber.