Anybody else suffering from extreme fatigue and/or chronic diarrhea?

EZLiving66 said:

My B12 last Thursday was over

My B12 last Thursday was over 2000 but I've only been taking that high dose for about three months. I'm going to cut back even though I hate to because it helped with the neuropathy pain. It's like I'm playing "Wack-a-Mole." I just get so frustrated! I try to drink more water but it causes more diarrhea; more diarrhea means I lose more fluid, so I have to drink more water.....it's like I'm on a merry-go-round I can't get off of. And then, one day for no apparent reason when I get up I have all kinds of energy even with the chronic diarrhea, but it usually only lasts a day or two.  I've kept activities and food diaries but nothing shows up to pinpoint the problem.

Love,

Eldri

I can see your frustration has a very real cause!  Do you see a gastroenterologist for your diarrhea?  With all the contributing factors to your diarrhea, a specialist in bowels might be  helpful.   After reading your post, I remember reading that dehydration can cause muscle and joint pain as we age, because the supporting tissue gets "dried out".  I think your discussion here will be very helpful for others on the board.  

MoeKay said:

Did the diarrhea start after your gallbladder removal?

Hi Eldri,

When I saw that you do not have a gallbladder, a lightbulb went off.  I take a bile acid sequestrant for my bowel issues.  When I was doing research on the medication I currently take, colesevelam, I happened to notice that many of the people with chronic diarrhea who were taking a bile acid sequestrant were individuals who had previously had their gallbladders removed.  Here's a short article on the topic that says chronic diarrhea is a problem which occurs in approximately 10% of those without gallbladders:

https://www.medicinenet.com/diarrhea_gallbladder_removal/ask.htm

If you haven't previously ruled out bile acid malabsorption (BAM) due to your gallbladder removal, it might be worth exploring with a gastroenterologist, as Forherself has suggested. 

Also, the colesevelam I take has the added benefit of lowering cholesterol, which is the reason I was able to convince my doctor to prescribe it for me in the first place.  My doctor had raised the issue of starting me on a statin, but I did not want to go that route because one of the side effects of statins can be diarrhea. 

 

 

 

Yikes, Eldri! Your diarrhea is far worse than what I've experienced, except during chemo (when I had frequent what I called "purge days!). However, my oldest sister has had "sensitive bowels" dating back to childhood. When she was on Metformin, her diarrhea got to the point where she barely left the house, couldn't eat out or even at one of our houses. We encouraged her to talk with her doctor about trying a different diabetes drug, but she never did. But when she developed chronic kidney disease a few years ago, her doctor prescribed a different diabetes drug. While she still has some issues with diarrhea now, it's nothing like what she had while on Metformin.

I know that those of us taking Metformin who had cancer take it despite the diarrhea side effect in the hopes that it will deter a recurrence. But as you've always said, quality of life is more important to you than quantity. Perhaps it's time to try one of the other diabetes drugs to see if that would help the diarrhea situation. As you say, it may have nothing to do with the fatigue you've been struggling with. But solving one issue might make it easier to identify the cause of your fatigue.

Interesting comment about gall bladder removal, MoeKay. Both my sisters had their gall bladders removed many years ago. Neither take a bile acid sequestrant. I've been encouraging my other sister, who also has digestive issues, to talk with a gastroenterologist about her situation. But like Eldri, she also takes thyroid medication, along with other medication for high blood pressure. These multiple conditions make it so hard get on a good drug regimen that doesn’t cause more problems.

Forherself said:

Just an aside

Do you have access to your chart online?  If not it might be a good idea to set it up.  Then you can send messages.  I don't often but when I do I always get an answer.  I think phone calls can get lost.   The electronic trail lasts a long time.  It's hard to find new family doctors when you are on Medicare.  If you are.

Thanks Forherself. Good idea on using their online contact. I'm not on Medicare yet... That happens next April. 

I will say that my hip is already a lot better since I stopped taking the statin. I have only had one stabbing pain in the last 3 days. And, I can walk without feeling like my hip is going to break. I was even able to walk 3 miles yesterday. This improvement is so much faster than I expected it to be. My muscles are still sore but I expect that to resolve as well since other things are better.

I'm continuing to take the CoQ10 and I do have more energy. This may be something for others that are in our age group to consider. I ordered the Choleast that takingcontrol suggested and I noticed it also contains CoQ10. Looking forward to trying it and hopeful it will keep my cholesterol at least safely down if not in the normal levels.

As always, I appreciate all of the ladies on this board that continue to offer ideas and support. We really are a special group.

Love and Hugs,

Cindi

oldbeauty said:

Glad this has turned into a diarrhea thread as well as fatigue

Eldri, thank you for so forthrightly discussing post-treatment diarrhea.  I blame mine on chemo, mostly because my daily diarrhea is almost exclusively a morning thing.  I dismiss Metformin as an exclusive cause because it doesn't happen after my evening meal.  Like you, I wait to leave the house in the morning until I've had round four or five but I never have a problem in the afternoon or evening.  My functional medicine physician believes it's related to failure of the bowel to absorb water before elimination.  He said I don't meet the diagnostic definition of IBD because I have no abdominal pain.  I "just" have uncontrollable watery daily explosions, and when the urge strikes you have very little time to find a bathroom.  I often get the urge on our woodsy walks and must scurry off the path.  Sometimes on my walk home I am not so lucky and I will leave it at that!  Based on CMB's report that her doctor OK'd one Imodium daily, I started that yesterday.  Too soon to tell whether that will help.  I am going to take this up with my internist.  She prescribed some tests but I was disappointed to see that they were related only to looking for bacteria or other things I regards as travel related.  I'd hoped a lab tech was going to analyze the stool for its constituents and the mucous content that's often there.  I suspect a gastroenterologist also is not going to wade too far into the weeds.  There's probably not codes for the kind of analysis I was hoping for.  But I will ask for a referral.  In addition to the QOL issue, I want to know whether the diarrhea is to blame for my low iron, B-12, B-6, D, etc.  I take supplements but always wonder if the malabsorption of water also explains the deficiency of nutrients despite a diet of wholesome foods. I'd read that nutrient absorption happens mainly in the duodenum for many nutrients like iron, but the duodenum is a tricky organ to see... I think only an endoscopy is likely to reach there.  Certainly not a colonoscopy.  I don't have any answers; I'm just pleased we are talking about this and I have at least one idea to try. I would like to know what fast growing cells line the gut that could have been killed off by chemo.  My head and body hair never really grew back and my taste buds are pretty much gone but those are the only innocent bystanders I know about.  Anyway, thanks all for your insight.  Best wishes, Oldbeauty

Oldbeauty,

I would just add that I actually took two Imodium tablets every morning for the first couple of weeks before I decided to try just one pill – which seems to work for me. But as Eldri wrote – she takes 3 Imodium every morning – so it clearly depends upon the individual.

I'm not due for another endoscopy/colonoscopy until next year, so I haven't spoken to my gastroenterologist since last year. Last year's endoscopy pathology report did identify that I had some inflammation from reflux, but not bacteria from Helicobacter pylori. I had to take Prilosec for a month afterwards.

Diarrhea is such a frustrating problem that we've seen can have so many causes.

A side note – my head hair, which was already getting thin prior to cancer – grew back after chemo exactly the same color and texture – only a way LOT less.

Good luck with your Imodium test.

oldbeauty said:

Glad this has turned into a diarrhea thread as well as fatigue

Eldri, thank you for so forthrightly discussing post-treatment diarrhea.  I blame mine on chemo, mostly because my daily diarrhea is almost exclusively a morning thing.  I dismiss Metformin as an exclusive cause because it doesn't happen after my evening meal.  Like you, I wait to leave the house in the morning until I've had round four or five but I never have a problem in the afternoon or evening.  My functional medicine physician believes it's related to failure of the bowel to absorb water before elimination.  He said I don't meet the diagnostic definition of IBD because I have no abdominal pain.  I "just" have uncontrollable watery daily explosions, and when the urge strikes you have very little time to find a bathroom.  I often get the urge on our woodsy walks and must scurry off the path.  Sometimes on my walk home I am not so lucky and I will leave it at that!  Based on CMB's report that her doctor OK'd one Imodium daily, I started that yesterday.  Too soon to tell whether that will help.  I am going to take this up with my internist.  She prescribed some tests but I was disappointed to see that they were related only to looking for bacteria or other things I regards as travel related.  I'd hoped a lab tech was going to analyze the stool for its constituents and the mucous content that's often there.  I suspect a gastroenterologist also is not going to wade too far into the weeds.  There's probably not codes for the kind of analysis I was hoping for.  But I will ask for a referral.  In addition to the QOL issue, I want to know whether the diarrhea is to blame for my low iron, B-12, B-6, D, etc.  I take supplements but always wonder if the malabsorption of water also explains the deficiency of nutrients despite a diet of wholesome foods. I'd read that nutrient absorption happens mainly in the duodenum for many nutrients like iron, but the duodenum is a tricky organ to see... I think only an endoscopy is likely to reach there.  Certainly not a colonoscopy.  I don't have any answers; I'm just pleased we are talking about this and I have at least one idea to try. I would like to know what fast growing cells line the gut that could have been killed off by chemo.  My head and body hair never really grew back and my taste buds are pretty much gone but those are the only innocent bystanders I know about.  Anyway, thanks all for your insight.  Best wishes, Oldbeauty

Sounds a lot like what I had after radiation. You expect diarrhea, but it was so extreme, and went on so long. I finally saw GI and had a colonocopy and was diagnosed with microscopic colitis, a type of inflammatory bowel disease.

I assume both radiation and the MC paly a role, but it seems to be a forever problem, sometimes better, sometimes worse. Many times MC is triggered by medications,  but chemo is not on that list. I really begin to wonder if it should be.

Anyway, it can only be diagnosed by biopsies, and gets missed a lot or misdiagnosed as IBS. No cure.  Sometimes it just goes away. They use a special delayed release steroid (budesonide) that mostly stays in the colon. Lucky me it didn't make a big difference. Cholestyramine helps. 

EZLiving66 said:

When I read what you wrote

When I read what you wrote Old Beauty, I cried. I finally found someone who understands what my life is like. And yes, my diarrhea is soooo much worse in the morning. When we still owned our business I knew I had to "go" four times before I could drive into work at 11 a.m. or, as you said, I suffered the consequences. When we travel between Wisconsin and Florida I don't eat the day before, take the Immodium and wear adult diapers.  I've had an upper and lower GI, an endoscopy a couple of times and a virtual colonoscopy along with a regular colonoscopy but nothing unusual was found except some fatty spots on my liver and a few benign pockets in my intestines.

My oncologist believed the chemo killed off part of the lining of my stomach and intestines since it did so much other damage. It may very well be why I have to take vitamins if they're not being absorbed through the food I eat. I have gone off Metformin for a few months to see if it made a difference in addition to switching to the fast-acting formula but it made no difference. Since I was 12, I've had problems with diarrhea but NOTHING like it since I've had chemo. 

In December I told my PA I did not want any more invasive tests. After seeing my lab report from last Thursday, I'm thinking that with my TSH being 5.73 along with the chronic diarrhea, it is the reason why I'm experiencing this awful fatigue. 

Thank you so much, Old Beauty, for posting this!! I don't think anyone can understand what this is like unless you've gone through it. I know my doctor and her PA don't. I still remember when I was hospitalized with esophageal erosion, my attending nurse asked me, "Do you ALWAYS have diarrhea this bad?" Yup!

Love,

Eldri

I empathize with your frustration.  I know our health providers are not unfeeling, but it is difficult to feel like these QOL issues like diarrhea, severe neuropathy, hair loss, etc. get shrugged off as "it is what it is."  Yes, it is wonderful to be alive despite having an incurable illness but these things are a bummer nonetheless.  Best wishes, Oldbeauty. 

oldbeauty said:

Glad this has turned into a diarrhea thread as well as fatigue

Eldri, thank you for so forthrightly discussing post-treatment diarrhea.  I blame mine on chemo, mostly because my daily diarrhea is almost exclusively a morning thing.  I dismiss Metformin as an exclusive cause because it doesn't happen after my evening meal.  Like you, I wait to leave the house in the morning until I've had round four or five but I never have a problem in the afternoon or evening.  My functional medicine physician believes it's related to failure of the bowel to absorb water before elimination.  He said I don't meet the diagnostic definition of IBD because I have no abdominal pain.  I "just" have uncontrollable watery daily explosions, and when the urge strikes you have very little time to find a bathroom.  I often get the urge on our woodsy walks and must scurry off the path.  Sometimes on my walk home I am not so lucky and I will leave it at that!  Based on CMB's report that her doctor OK'd one Imodium daily, I started that yesterday.  Too soon to tell whether that will help.  I am going to take this up with my internist.  She prescribed some tests but I was disappointed to see that they were related only to looking for bacteria or other things I regards as travel related.  I'd hoped a lab tech was going to analyze the stool for its constituents and the mucous content that's often there.  I suspect a gastroenterologist also is not going to wade too far into the weeds.  There's probably not codes for the kind of analysis I was hoping for.  But I will ask for a referral.  In addition to the QOL issue, I want to know whether the diarrhea is to blame for my low iron, B-12, B-6, D, etc.  I take supplements but always wonder if the malabsorption of water also explains the deficiency of nutrients despite a diet of wholesome foods. I'd read that nutrient absorption happens mainly in the duodenum for many nutrients like iron, but the duodenum is a tricky organ to see... I think only an endoscopy is likely to reach there.  Certainly not a colonoscopy.  I don't have any answers; I'm just pleased we are talking about this and I have at least one idea to try. I would like to know what fast growing cells line the gut that could have been killed off by chemo.  My head and body hair never really grew back and my taste buds are pretty much gone but those are the only innocent bystanders I know about.  Anyway, thanks all for your insight.  Best wishes, Oldbeauty

I don't know why the above formated that way. Sorry about that. Also, if you want, you can just buy oat flour if you don't want to process your own. Just reduce the amount to 3/4 cup oat flour instead of the 1 cup of oats.

Hey Eldri, sending you loads of support and hope that this helps you. I can't say I blame you for not going through more screening with all that you have been through. And, I'm so glad you started this thread. We went a bit off topic but it sure helped me.  I went off the statin just over a week ago and what a difference! I am using the red yeast rice that takingcontrol suggested along with a couple of other supplements. And, I have changed my diet in hopes of keeping my LDL and triglicerides down to at least a safer level. My doctor had already told me it is hereditary and that I can't diet or exercise it lower. Whatever happens down the road, I don't choose to live like I did for the last 4 months....

Please let us know how you do with your changes.

Love and Hugs,

Cindi

Thanks, MoeKay for the link. Very interesting (albeit somewhat discouraging) to read that so many different factors can result in chronic diarrhea.

Although I've recently found that taking one Loperamide (Imodium) tablet each morning keeps my diarrhea generally under control, I've always had more of a diarrhea problem in the morning, especially after coffee. The article notes that "Morning-predominant diarrhea can be improved by bedtime or early morning dosing" when discussing Loperamide. I may try switching to taking the tablet at bedtime instead to see if that makes any improvement for me.

Good luck with Metamucil, oldbeauty. I hope that works for you, as it has for many others.

As for me, I was directed to take Metamucil when I started radiation. Despite following the recommended BRAT diet, I had horrible diarrhea. The nurse told me to stop taking Metamucil and the horrible diarrehea went away. So clearly that was not a solution for me. I've been afraid to try it ever since!

But as MoeKay's linked article shows, there are many reasons for diarrhea and many possible methods of improvement.  We just have to find what works for each of us.