Hi everyone,
Thought I'd see if anyone here might have any ideas as to why my wife has been having loose stools / diarrhea for the last 3 months.
She went to her GP, and they've tested her stool for bugs / viruses that may be the culprit, but nothing found. They also tried the "kill 'em all dead, let God sort 'em out" approach, with several rounds of antibiotics. That didn't help. This week she'll have a colonoscopy, which hopefully will yield some insights, but I'm not betting on it either.
Interestingly, the stool contains a lot of mucus, and I've come to find out in all my searching for help that this mucus contains IgA and IgM immunoglobulins.
She has smoldering multiple myeloma, IgA kappa with immunoparesis.
This all started three months ago from one day to the next. She's drastically cut back on all her supplements, which were very helpful in keeping her number down, so it's very worrisome to say the least. Today I was thinking of giving her glutamine, which is indicated for intestinal health, but then I also saw that myeloma thrives on glutamine, much like it does sugar.
Anyone have any ideas / thoughts?
Best of luck to all!
Forums
10 posts
• Page 1 of 1
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Mark T - Name: Mark T
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 4/2016
- Age at diagnosis: 60
Re: Loose stools / diarrhea with smoldering multiple myeloma
Hi Mark,
I'm very sorry to hear about your wife's GI issues.
You said that your wife is currently diagnosed with smoldering myeloma. I'm assuming that means that she's not taking anything other than supplements for her multiple myeloma, right?
I ask because the myeloma drug Revlimid is known to cause diarrhea in many people who take it, and there are options for addressing the issue if Revlimid is thought to be the cause. See this article for more details:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 14, 2014
It's worth mentioning that the solution (medication) suggested in the above article may be helpful to your wife regardless if she is taking Revlimid or not.
You also may want to check out the discussions in this list of forum threads. It's from the GI-related side effects link in this posting,
"Useful links to existing forum discussions"
which you can always find at the top of the "Treatments & Side Effects" section of the forum.
Good luck, and please let us know what you find out as you try to find a solution to this problem.
I'm very sorry to hear about your wife's GI issues.
You said that your wife is currently diagnosed with smoldering myeloma. I'm assuming that means that she's not taking anything other than supplements for her multiple myeloma, right?
I ask because the myeloma drug Revlimid is known to cause diarrhea in many people who take it, and there are options for addressing the issue if Revlimid is thought to be the cause. See this article for more details:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 14, 2014
It's worth mentioning that the solution (medication) suggested in the above article may be helpful to your wife regardless if she is taking Revlimid or not.
You also may want to check out the discussions in this list of forum threads. It's from the GI-related side effects link in this posting,
"Useful links to existing forum discussions"
which you can always find at the top of the "Treatments & Side Effects" section of the forum.
Good luck, and please let us know what you find out as you try to find a solution to this problem.
Re: Loose stools / diarrhea with smoldering multiple myeloma
Mark,
Interesting, as I also have these issues. Have had them all my life. I guess irritable bowel syndrome (IBS) is the diagnosis, and I've lived with it as one of many inconveniences in my life. But it has gotten worse lately, after I was laid off work, though that has (so far) probably decreased level of stress as I am taking time off at his juncture, though finding a job will be extremely hard.
To the point that it affects the way I feel and quality of life, beyond 5 restroom stops any time I have to go somewhere.
Looking at your prior posts, your wife blood tests – she's doing great, with M-protein that went from low to none? Also, 11% plasma cells is barely a multiple myeloma threshold, and immunoparesis is mild, and kappa-lambda free light chain ratio is only 5-ish.
I have immunoparesis also, and IgM / IgA are less than half of minimum and on the down trend, while kappa-lambda ratio hovers around 30 and M-protein about 0.5 g/dl (5 g/l).
I really don't think your wife's GI issues are multiple myeloma- related, neither do I think are mine.
Best of luck!
Interesting, as I also have these issues. Have had them all my life. I guess irritable bowel syndrome (IBS) is the diagnosis, and I've lived with it as one of many inconveniences in my life. But it has gotten worse lately, after I was laid off work, though that has (so far) probably decreased level of stress as I am taking time off at his juncture, though finding a job will be extremely hard.
To the point that it affects the way I feel and quality of life, beyond 5 restroom stops any time I have to go somewhere.
Looking at your prior posts, your wife blood tests – she's doing great, with M-protein that went from low to none? Also, 11% plasma cells is barely a multiple myeloma threshold, and immunoparesis is mild, and kappa-lambda free light chain ratio is only 5-ish.
I have immunoparesis also, and IgM / IgA are less than half of minimum and on the down trend, while kappa-lambda ratio hovers around 30 and M-protein about 0.5 g/dl (5 g/l).
I really don't think your wife's GI issues are multiple myeloma- related, neither do I think are mine.
Best of luck!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Loose stools / diarrhea with smoldering multiple myeloma
Thank you both so much, Cheryl G and Dimamar, for your replies.
Cheryl,
Thank you for the links to the British study about Revlimid and diarrhea. It will be helpful should it come to that. I'll scour the links you supplied here in the Beacon forum to see if others here have successfully treated this issue. Truthfully, I've been searching the Internet for 3 months on a solution, and haven't come up with anything. Just to make things interesting, she had her gallbladder removed when she was 16.
Lastly, you are correct in the fact that, as someone with smoldering multiple myeloma, she's not taking any medication.
Dimamar,
I'm sorry to hear about your IBS. And while I appreciate your opinions, I keep thinking my wife could succumb to IBS with her immunoparesis. As you've probably read in my previous posts, I'm a worrier. Being that my wife's diagnosis is only a year and a half old, I'm worried that things can escalate quickly with her more aggressive type IgA myeloma – especially when she's not able to take her supplements due to this recent condition.
As mentioned, she'll have a colonoscopy tomorrow, and will hopefully find out something that will help. Lastly, from what I understand, the M-spike can seemingly disappear. If the IgA had went down significantly, then I think there'd be a reason to celebrate.
Best of luck to you on your job search.
Cheryl,
Thank you for the links to the British study about Revlimid and diarrhea. It will be helpful should it come to that. I'll scour the links you supplied here in the Beacon forum to see if others here have successfully treated this issue. Truthfully, I've been searching the Internet for 3 months on a solution, and haven't come up with anything. Just to make things interesting, she had her gallbladder removed when she was 16.
Lastly, you are correct in the fact that, as someone with smoldering multiple myeloma, she's not taking any medication.
Dimamar,
I'm sorry to hear about your IBS. And while I appreciate your opinions, I keep thinking my wife could succumb to IBS with her immunoparesis. As you've probably read in my previous posts, I'm a worrier. Being that my wife's diagnosis is only a year and a half old, I'm worried that things can escalate quickly with her more aggressive type IgA myeloma – especially when she's not able to take her supplements due to this recent condition.
As mentioned, she'll have a colonoscopy tomorrow, and will hopefully find out something that will help. Lastly, from what I understand, the M-spike can seemingly disappear. If the IgA had went down significantly, then I think there'd be a reason to celebrate.
Best of luck to you on your job search.
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Mark T - Name: Mark T
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 4/2016
- Age at diagnosis: 60
Re: Loose stools / diarrhea with smoldering multiple myeloma
Mark,
I sure understand - it's really sweet of you to worry about your wife.
I think we need to be on our toes and not take stability or even some improvements for granted, but yet live lives and try not to live for the disease.
And sure, IgA may be a different animal than IgG that I have. By the way, my latest IgM was 20, and IgA 30, but when I mentioned it to my new oncologist, his reply was basically "Do not worry, I've seen quite a few people where these are undetectable"
All the best to you!
I sure understand - it's really sweet of you to worry about your wife.
I think we need to be on our toes and not take stability or even some improvements for granted, but yet live lives and try not to live for the disease.
And sure, IgA may be a different animal than IgG that I have. By the way, my latest IgM was 20, and IgA 30, but when I mentioned it to my new oncologist, his reply was basically "Do not worry, I've seen quite a few people where these are undetectable"
All the best to you!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Loose stools / diarrhea with smoldering multiple myeloma
Hello Mark,
I think I did the 'advanced search' in this forum about a month ago and came across the same article about the British research that Cheryl G has referred you to.
I had to send it to my PCP to convince him that the 2 and 1/2 years of Revlimid has been causing a much more severe diarrhea, and it is quite different from the acidosis and from the almost allergic reaction I have had to black pepper. He prescribed the cholestyramine (Questran) only after reading the article. I have been taking it for about three weeks. I have had immediate relief from the diarrhea. I had to even reduce the recommended dose to avoid constipation.
In my case, I have to be careful with the timing of the Questran, i.e. take it many hours before the Revlimid (and the daily aspirin, too) to make sure that there is no interference and the necessary Revlimid is absorbed.
I hope my first-hand experience helps your decision making process.
I think I did the 'advanced search' in this forum about a month ago and came across the same article about the British research that Cheryl G has referred you to.
I had to send it to my PCP to convince him that the 2 and 1/2 years of Revlimid has been causing a much more severe diarrhea, and it is quite different from the acidosis and from the almost allergic reaction I have had to black pepper. He prescribed the cholestyramine (Questran) only after reading the article. I have been taking it for about three weeks. I have had immediate relief from the diarrhea. I had to even reduce the recommended dose to avoid constipation.
In my case, I have to be careful with the timing of the Questran, i.e. take it many hours before the Revlimid (and the daily aspirin, too) to make sure that there is no interference and the necessary Revlimid is absorbed.
I hope my first-hand experience helps your decision making process.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Loose stools / diarrhea with smoldering multiple myeloma
I have the same issue. Up to 9-10 bowel movements per day and loose and mucousy. I also have smoldering multiple myeloma. My colonoscopy has already been done since I had an initial positive on an amyloid test (that later turned out to be negative). It was normal. I need help!
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Kathymcknight60 - Name: Kathy McKnight
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2004, 2017
- Age at diagnosis: 49
Re: Loose stools / diarrhea with smoldering multiple myeloma
After a colonoscopy, my wife has now been diagnosed with lymphocytic colitis. Her father and his sister may have had this condition also, after recalling they both had complained of diarrhea at one time or another when they were both still alive.
Her latest latest blood test on August 21 is back also. The test revealed her M-spike was still undetectable, as it was on her previous test in April. Prior to that is was 0.35 g/dL, Her IgA was down to 730 from 758. The highest her IgA has been was 783. This was her 5th blood test after being diagnosed with smoldering multiple myeloma in March 2016. For this last three months she'd cut down taking her supplements as she was concerned they may have been causing her diarrhea. During this time she started using CBD oil. So it's hard to say what exactly is happening, we just know her blood tests are getting better, and her doctor seemed to be happy. She has IgA kappa smoldering multiple myeloma, which means her IgA is high, and her kappa free light chain is high. Also, she has a low IgG number (~555), and she is considered immunoparesis, or has an immune system that is weak/challenged.
Supplements are: IP6, black cumin seed oil & organic seeds, pterostilbene, resveratrol, quercetin, vitamin D3, EGCG, MGN-3, and apricot seeds. She'd be using curcumin if she could, but it gives her diarrhea, as it does about ~18% of the people who take it.
Hope this is helpful, and God bless everyone in their battle with multiple myeloma.
Her latest latest blood test on August 21 is back also. The test revealed her M-spike was still undetectable, as it was on her previous test in April. Prior to that is was 0.35 g/dL, Her IgA was down to 730 from 758. The highest her IgA has been was 783. This was her 5th blood test after being diagnosed with smoldering multiple myeloma in March 2016. For this last three months she'd cut down taking her supplements as she was concerned they may have been causing her diarrhea. During this time she started using CBD oil. So it's hard to say what exactly is happening, we just know her blood tests are getting better, and her doctor seemed to be happy. She has IgA kappa smoldering multiple myeloma, which means her IgA is high, and her kappa free light chain is high. Also, she has a low IgG number (~555), and she is considered immunoparesis, or has an immune system that is weak/challenged.
Supplements are: IP6, black cumin seed oil & organic seeds, pterostilbene, resveratrol, quercetin, vitamin D3, EGCG, MGN-3, and apricot seeds. She'd be using curcumin if she could, but it gives her diarrhea, as it does about ~18% of the people who take it.
Hope this is helpful, and God bless everyone in their battle with multiple myeloma.
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Mark T - Name: Mark T
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 4/2016
- Age at diagnosis: 60
Re: Loose stools / diarrhea with smoldering multiple myeloma
Hi Mark T,
I'm sorry to hear that your wife is having GI troubles that are keeping her from taking the supplements that may have been helping her smoldering myeloma. I too now have smoldering (IgA), but I also have suffered from Crohn's disease for almost 30 years and have experienced lots of GI issues as we were trying to regulate my medications. I will say that I found taking 1/2 and sometimes one Imodium (loperamide) would really help with the diarrhea. I don't think I would recommend this for a "long term" fix, but for some temporary relief it may be helpful.
Good luck.
I'm sorry to hear that your wife is having GI troubles that are keeping her from taking the supplements that may have been helping her smoldering myeloma. I too now have smoldering (IgA), but I also have suffered from Crohn's disease for almost 30 years and have experienced lots of GI issues as we were trying to regulate my medications. I will say that I found taking 1/2 and sometimes one Imodium (loperamide) would really help with the diarrhea. I don't think I would recommend this for a "long term" fix, but for some temporary relief it may be helpful.
Good luck.
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: Loose stools / diarrhea with smoldering multiple myeloma
Kathymcknight60 wrote:
Hi Kathy,
You might try taking vitamin D3 supplements or try getting more sun exposure. When I had ulcerative colitis, I realized that the flare-ups only occurred during the winter months, December to March. I assumed this was due to insufficient vitamin D. I then supplemented with vitamin D3 and that seemed to help during winter months. Don't go crazy with the amounts; 100 - 300% of RDA was all I took. Years later I retro diagnosed my ulcerative colitis as caused by Stage 1 myeloma. I had an IgG M-spike of 3.5 g/dL and partial immunoparesis of IgA of 37 mg/dL, which my gastroenterologist failed to identify as myeloma.
You also might try avoiding gluten. I believe that my gluten sensitivity caused inflammation of my colon, which opportunistic bacteria colonized due to relative lack of IgA. I know that gluten caused gut pain and also triggered flare-ups before I quit eating it. I've also surmised that there was another factor causing inflammation, perhaps IgE. After I progressed to Stage 2 and then 3 myeloma and complete immunoparesis of IgA, the ulcerative colitis amazingly disappeared. I believe that the other inflammation factor has been suppressed by immunoparesis as well, which explains the complete cessation of the ulcerative colitis.
You also might try reducing your fiber intake.
I also took enteric-coated fish oil to try to reduce colon inflammation. It helped some.
Best of luck calming your colon,
Dave
I have the same issue. Up to 9-10 bowel movements per day and loose and mucousy. I also have smoldering multiple myeloma. My colonoscopy has already been done since I had an initial positive on an amyloid test (that later turned out to be negative). It was normal. I need help!
Hi Kathy,
You might try taking vitamin D3 supplements or try getting more sun exposure. When I had ulcerative colitis, I realized that the flare-ups only occurred during the winter months, December to March. I assumed this was due to insufficient vitamin D. I then supplemented with vitamin D3 and that seemed to help during winter months. Don't go crazy with the amounts; 100 - 300% of RDA was all I took. Years later I retro diagnosed my ulcerative colitis as caused by Stage 1 myeloma. I had an IgG M-spike of 3.5 g/dL and partial immunoparesis of IgA of 37 mg/dL, which my gastroenterologist failed to identify as myeloma.
You also might try avoiding gluten. I believe that my gluten sensitivity caused inflammation of my colon, which opportunistic bacteria colonized due to relative lack of IgA. I know that gluten caused gut pain and also triggered flare-ups before I quit eating it. I've also surmised that there was another factor causing inflammation, perhaps IgE. After I progressed to Stage 2 and then 3 myeloma and complete immunoparesis of IgA, the ulcerative colitis amazingly disappeared. I believe that the other inflammation factor has been suppressed by immunoparesis as well, which explains the complete cessation of the ulcerative colitis.
You also might try reducing your fiber intake.
I also took enteric-coated fish oil to try to reduce colon inflammation. It helped some.
Best of luck calming your colon,
Dave
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David Langston - Name: David Langston
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2010 & diagnosis from 2000 SPEP
- Age at diagnosis: 59
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