MGUS, SMM or MM With Chronic Diarrhea Or Other GI Maladie?

Posted by Kappa King @kappaking, Mar 16 11:25pm

Is there anyone who was diagnosed with MGUS, SMM or MM who also experienced chronic diarrhea or other GI issues before treatment as one of the symptoms? TIA.

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@kappaking hi there. MGUS here. I have not had the pleasure of that experience, although my GI system gets a bit wanky due to DM and metformin. I pretty much resolved that changing to extended release Metformin.
Have you spoken to your Hem/Onc doc or a gastroenterologist?

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@kappaking I have long endured gastric upset, including diarrhea, with no formal medical diagnosis of the cause. I don't honestly know if they would consider it as one of the symptoms of my march from MGUS to SMM to MM.
Unfortunately, there is no pattern, no rhyme or reason when it may appear, which can be disconcerting. And now, on active treatment for MM, there are the known side effects of the chemo to add to that.

With the okay of my oncologist, I use over-the-counter loperamide anti-diarrheal either in liquid or pill form. Just 2mg helps me a lot.
Ginger

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I was diagnosed with mgus April 2023, just diagnosed with lymphocytic colitis with colonoscopy biopsy. Starting week 4 of 10 of steroid treatment. Still awaiting biopsy test results for gi amyloidosis. I am 48, female.

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I was dx w/MGUS in 2015 and have experienced bowel problems off and on which I could usually manage w/OTC loperamide.
In October 2023 a colonoscopy revealed through biopsies IBD
revealed both by architectural deformities from stomach to rectum and evidence of colitis.
This was unexpected by doctors as well as myself as the previous few years had been mostly GI symptom free.
Do you think MGUS and autoimmune disorders can be related?

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@juniperjgin

I was dx w/MGUS in 2015 and have experienced bowel problems off and on which I could usually manage w/OTC loperamide.
In October 2023 a colonoscopy revealed through biopsies IBD
revealed both by architectural deformities from stomach to rectum and evidence of colitis.
This was unexpected by doctors as well as myself as the previous few years had been mostly GI symptom free.
Do you think MGUS and autoimmune disorders can be related?

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I wouldn't know. Maybe ask your doctor.

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@kappaking

I wouldn't know. Maybe ask your doctor.

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Thank you.

It’s something I think about often as I have “collected” autoimmune disorders since my MGUS DX.

It’s NOT a topic I enjoy discussing with MOST drs.
It’s been a humiliating experience repeated many times.
I don’t like being looked at or responded to as a potential hypochondriac.

I just wonder what others have experienced and what the anecdotal “evidence” we collectively have may reveal.

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@juniperjgin

Thank you.

It’s something I think about often as I have “collected” autoimmune disorders since my MGUS DX.

It’s NOT a topic I enjoy discussing with MOST drs.
It’s been a humiliating experience repeated many times.
I don’t like being looked at or responded to as a potential hypochondriac.

I just wonder what others have experienced and what the anecdotal “evidence” we collectively have may reveal.

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I understand.

I have suffered from eczema on-and-off for about 30 years, mostly "on" in the last 20 of those years. I also suffer from eosinophilic esophagitis since 2012. So I definitely think something had been going on with my immune system even before the results of my recent blood work. But, to be clear, I've not been diagnosed with MGUS or any other sort of plasma cell disorder yet. Tests are ongoing. I wish I could just get things over with and receive a formal diagnosis today. The waiting is the hardest part.

On another note - my new primary care physician told me that she doesn't think my chronic diarrhea has anything to do with my most recent blood test results. More likely, it's the omeprazole I've been taking daily since 2012 to manage the esophagitis.

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I was diagnosed with MGUS about 3 years ago
This year I was diagnosed with h pylori and a hiatal hernia
Both are gi issues

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My MGUS was diagnosed 8 years ago. I also have celiac and collagenous colitis that are controlled by eschewing (as opposed to chewing?) gluten and NSAIDs, I also minimize legumes. I've kept a food log since celiac (14 years) so when diarrhea hit 8 years ago it was easy to determine what was causing the flares (also aspirin and other NSAIDs can irritate the GI tract). I don't have symptoms from the MGUS. My years of GERD, skin rashes, GI, and a few other problems went away within a few months after going gluten free.

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@shescomeundone

I was diagnosed with mgus April 2023, just diagnosed with lymphocytic colitis with colonoscopy biopsy. Starting week 4 of 10 of steroid treatment. Still awaiting biopsy test results for gi amyloidosis. I am 48, female.

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I'm 69 and was diagnosed with MGUS and collagenous colitis (a cousin of your colitis) about 8 years ago. No association between the two, I just seem to collect afflictions (there are better hobbies). The MGUS is asymptomatic and the colitis I can control with diet, trying to avoid stress, getting enough sleep, and such. I have celiac so am GF and on a mostly FODMAP diet. People with celiac (or gluten intolerance?) are more likely to have microscopic colitis (MC). My GI said to avoid all NSAIDs with MC. Five days of baby aspirin 2x/day was enough to kick off a flare with me. Everyone is different regarding triggers. I can eat diary and most other foods, but have to avoid gluten, and limit legumes, cashews, pistachios, and most processed food. High fiber, other nuts, seeds, and such cause me no problems. I have a friend with severe diverticulitis and he has a very restricted diet that is complicated by his being an extremely picky eater.

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