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

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Comments

  • oldbeauty
    oldbeauty Member Posts: 319 **

    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

    Hugs, 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. 

  • MAbound
    MAbound Member Posts: 1,156 **
    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

    Psyllium

    You've probably tried this already, but psyllium (soluble fiber) might help diarrhea because it works by absorbing water in the intestines, whereas Immodium works by slowing gut movement (peristalsis) to give more time for water absorbtion. That may explain why Immodium might not be the best option if impaired water absorption is the issue. Benefiber and Metamucil are soluble fibers you might want to try. There are also some dietary sources. If you are new to taking it, it's important to remember to start with smal doses and work your way up to more, so don't expect it to solve diarrhea quickly. It will take persistence and time.

     

    https://www.mountsinai.org/health-library/supplement/psyllium#:~:text=Psyllium can also be used,firmer and slower to pass.&text=Adding high fiber foods (such,help lower heart disease risk. (Note the section on drug interactions)

    https://www.healthline.com/nutrition/foods-high-in-soluble-fiber

    My Instant Oatmeal recipe good for when you have diarrhea:

    3 cups quick cooking oats; divided; 1/2 c. packed brown sugar; 2 tsp. cinnamon, 1 tsp. salt, 1 cup + 3 tbsp. ground flax meal.

    Process 1 cup of oats to make a flour. Stir in remaining ingredients, mix well (by hand). Place 1/2 cup in a cereal bowl and add about 1 cup of water. Microwave 90 seconds on high. (Time may vary depending on your microwave's power). You can add Benefiber to this (tasteless) if you want, but be careful if you are just getting used to it. You can change up this recipe by leaving out the cinnamon and adding other flavorings like chopped apples or vanilla. I don't put milk on because you should avoid dairy when you have diarrhea.

    Hope this can help you or someone else.

  • MAbound
    MAbound Member Posts: 1,156 **
    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

    Psillium

    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.

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    I saw my doctor on Wednesday.

    I saw my doctor on Wednesday. As I suspected she upped my levothyroxine to .175 mg. since my TSH level was almost 6 and just a year ago it was 1.9. My A1c was 7.8 (much better than the 8.9 it had been) so she upped my glimepiride to try to get it down even more. 

    She added escitalopram - 10 mg to my regiment - 1/2 tablet to start for the first week and then 1 tablet after that. It's an anti-depressant but it's worked to regulate diarrhea. AND, she said it sounded like I was kind of depressed (who wouldn't be??). So I told her I'm going to try it. 

    We also discussed my high B12 levels. I told her how that B12 has taken my pain level from an 8 in my feet at night down to a 4 or 5 which means I can sleep through the night. She asked me to cut my dosage in half to see if it still worked but if not, go back to the higher level. We discussed quality of life and she said "at my age" that becomes an important factor rather than being concerned about how it may affect me 20 or 25 years down the pike.

    She wants blood work in three months and to see her in six months unless the diarrhea doesn't get any better within six weeks, then I should call her. 

    I also signed the paperwork not to have any more invasive tests. I told her they are too stressful and when I'm under stress, it makes my diarrhea much worse (like it can get much worse). After going through what I went through from the chemo, if my cancer came back, I would refuse treatment and go to palliative care and then hospice. Knock-on-wood, it hasn't yet. "Yet" being the operative word here.

    Thank you wonderful ladies for all your suggestions. I have tried a high fiber, low fiber, more raw vegetables, and less. Nothing has made a difference. She also thinks the chemo destroyed part of my stomach lining and those cells are never going to regenerate - just like my finger and toenails, the missing left eyebrow, and the bald spots on my scalp along with neuropathy in my feet, hands, left side of my tongue and left eye. Taxotere did a number of me, for sure!! Do they even use it anymore??

    I love you all and will let you know if this new stuff works!! And, as I always say, I'm alive, I have a wonderful family and all-in-all, a great life!

    Love,

    Eldri

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    edited April 23 #36
    Hey Eldri, sending you loads

    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

  • MoeKay
    MoeKay Member Posts: 354 **
    Chronic Diarrhea: Diagnosis & Management

    First, good luck, Eldri, with your new treatment plan.  I hope the changes your doctor has made work wonder to address your chronic diarrhea and fatigue in short order.  I also wanted to share the link to a journal article entitled "Chronic Diarrhea: Diagnosis and Management."  While parts of the article get a little deep, I thought it did a good job of providing a step-by-step analysis of all of the issues relating to diagnosis and treatment of chronic diarrhea.  One point that I found astounding is that more than 700 drugs have been implicated as causing diarrhea.  (p. 185).

    Here's the link:  https://www.cghjournal.org/article/S1542-3565(16)30501-8/pdf

  • cmb
    cmb Member Posts: 751 **
    Diarrhea & Loperamide

    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.

  • oldbeauty
    oldbeauty Member Posts: 319 **
    So far....

    I am finding that one 2 mg pill daily binds me up too much.  My drug plan does not cover the liquid 1 mg dose.  Because it clears the system w/in 24 hours, it would not be useful to dose myself every other day bc that would have me on a roller coaster of dosing.  Admittedly, I've only tried this for a little over 1 week.  I took 2 pills the second day and then I became a concrete factory after no production for two days!  No happy medium yet.  I will persevere.  Reading about Loperamide, I was surprised to see that it was treated like an opiod when it first came on the market, a Schedule 2 drug.  I did not realize it works by "narcotizing" the bowel to slow down motility and allow fluid absorption.  My problem has persisted for almost 4 years and I never thought to try Imodium.  I don't know why; probably my aversion to taking "drugs."  The fact that Imodium works suggests that my problem is not that chemo may have destroyed the "organ/cells" responsible for absorbing fluid before elimination but that chemo may have done something that triggers motility such that things move faster than this "organ" can accommodate.  I don't really understand.  But if my system is able with assistance to absorb the fluid so I can have more acceptable bowel function, I think I will bite the bullet and stop the Imodium trial and try instead the daily ingestion of psyllium powder to see if that more natural approach works.  That, actually, was what my PCP suggested a few years ago.  Metamucil here I come!  Thanks for the articles and the personal experience stories.  They help.  Best wishes, Oldbeauty

  • cmb
    cmb Member Posts: 751 **
    Good luck with Metamucil,

    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.

     

  • oldbeauty
    oldbeauty Member Posts: 319 **
    cmb said:

    Good luck with Metamucil,

    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.

     

    Thanks, cmb

    Yeah, that article that MoeKay posted was fascinating.  Very thorough discussion and I only had to look up half a dozen technical terms!  I have an in-office visit with my PCP in May and I figure I should at least try the Metamucil beforehand to report on the effects.  I'm still going to ask for a referral, however, to a gastroenterologist.  That article suggests it was not unreasonable for me to expect that the rigorous stool collection protocol she asked me to do was for the purpose of analyzing the constituent components of the stool in aid of a diagnosis, rather than just looking for C. difficile, E. coli, and the parasites and other pathogens associated with travel.  That was a waste of time and $$.  At least I know that a little bit of Imodium works, alas only too well!  Best wishes, Oldbeauty

  • MoeKay
    MoeKay Member Posts: 354 **
    edited April 26 #42
    My Unique Dilemma

    Like cmb and some of the other women mentioned above, I too have most (but clearly not all) of my bowel problems in the morning.  In all the years of my bowel issues, however, I've never taken one Imodium or any Metamucil whatsoever.  Years ago, my gastroenterologist told me to steer clear of Metamucil because since I completed treatment in 1999, I also have had many intermittent partial small bowel obstructions.  Right now I do take colesevelam, which is a bile acid sequestrant, for my bowel issues, but my doctor will only allow me to take 1/2 the recommended dose, because it too is contraindicated for people with a history of bowel obstructions.  I had bowel obstructions many years before I took colesevelam, so I know that's not why I have one every year or so.  I also take the colesevelam for my elevated LDL cholesterol, so it's kind of like a 2-for-1 treatment.  They alternative would be a statin, but statins have diarrhea as a possible side effect, so I've declined to go that route.  As someone who has had about 20-25 bowel obstructions over the past two decades, given the choice, I will take my frequent bowel movements and loose stools, which affect quality of life but are not painful.  Obstructions, on the other hand, are extremely painful and debilitating, and actually life-threatening if they don't resolve on their own, as all of mine have fortunately done in the past. 

    What I am going to try now is to add a calcium supplement, which the article I posted above mentions as a potential treatment for mild chronic diarrhea.  And as cmb is going to try with Imodium, I'm going to take the calcium in the evening, since I have most of my bowel problems early in the day.  I'm also planning to cut back on two of my favorites: dark chocolate and nuts, which I tend to overdose on, because both contain high amounts of magnesium, which can sometimes cause diarrhea or loose stools. 

    Let's hope that those of us with new plans of action for dealing with our wayward bowels are met with great success!

  • LisaPizza
    LisaPizza Member Posts: 343 **
    edited April 27 #43
    oldbeauty said:

    So far....

    I am finding that one 2 mg pill daily binds me up too much.  My drug plan does not cover the liquid 1 mg dose.  Because it clears the system w/in 24 hours, it would not be useful to dose myself every other day bc that would have me on a roller coaster of dosing.  Admittedly, I've only tried this for a little over 1 week.  I took 2 pills the second day and then I became a concrete factory after no production for two days!  No happy medium yet.  I will persevere.  Reading about Loperamide, I was surprised to see that it was treated like an opiod when it first came on the market, a Schedule 2 drug.  I did not realize it works by "narcotizing" the bowel to slow down motility and allow fluid absorption.  My problem has persisted for almost 4 years and I never thought to try Imodium.  I don't know why; probably my aversion to taking "drugs."  The fact that Imodium works suggests that my problem is not that chemo may have destroyed the "organ/cells" responsible for absorbing fluid before elimination but that chemo may have done something that triggers motility such that things move faster than this "organ" can accommodate.  I don't really understand.  But if my system is able with assistance to absorb the fluid so I can have more acceptable bowel function, I think I will bite the bullet and stop the Imodium trial and try instead the daily ingestion of psyllium powder to see if that more natural approach works.  That, actually, was what my PCP suggested a few years ago.  Metamucil here I come!  Thanks for the articles and the personal experience stories.  They help.  Best wishes, Oldbeauty

    Just FYI, any loperamide I've

    Just FYI, any loperamide I've ever bought was 2 mg and scored so they were easily broken in half. I did always find that it lasted me longer than 24 hours 

  • oldbeauty
    oldbeauty Member Posts: 319 **
    LisaPizza said:

    Just FYI, any loperamide I've

    Just FYI, any loperamide I've ever bought was 2 mg and scored so they were easily broken in half. I did always find that it lasted me longer than 24 hours 

    Thank you, LisaPizza

    If I go back to it, I will check this out.  I bought generic 2 mg gel caps so can't split those.  Best wishes, Oldbeauty

  • cmb
    cmb Member Posts: 751 **
    MoeKay said:

    My Unique Dilemma

    Like cmb and some of the other women mentioned above, I too have most (but clearly not all) of my bowel problems in the morning.  In all the years of my bowel issues, however, I've never taken one Imodium or any Metamucil whatsoever.  Years ago, my gastroenterologist told me to steer clear of Metamucil because since I completed treatment in 1999, I also have had many intermittent partial small bowel obstructions.  Right now I do take colesevelam, which is a bile acid sequestrant, for my bowel issues, but my doctor will only allow me to take 1/2 the recommended dose, because it too is contraindicated for people with a history of bowel obstructions.  I had bowel obstructions many years before I took colesevelam, so I know that's not why I have one every year or so.  I also take the colesevelam for my elevated LDL cholesterol, so it's kind of like a 2-for-1 treatment.  They alternative would be a statin, but statins have diarrhea as a possible side effect, so I've declined to go that route.  As someone who has had about 20-25 bowel obstructions over the past two decades, given the choice, I will take my frequent bowel movements and loose stools, which affect quality of life but are not painful.  Obstructions, on the other hand, are extremely painful and debilitating, and actually life-threatening if they don't resolve on their own, as all of mine have fortunately done in the past. 

    What I am going to try now is to add a calcium supplement, which the article I posted above mentions as a potential treatment for mild chronic diarrhea.  And as cmb is going to try with Imodium, I'm going to take the calcium in the evening, since I have most of my bowel problems early in the day.  I'm also planning to cut back on two of my favorites: dark chocolate and nuts, which I tend to overdose on, because both contain high amounts of magnesium, which can sometimes cause diarrhea or loose stools. 

    Let's hope that those of us with new plans of action for dealing with our wayward bowels are met with great success!

    Too much or too little - seeking a happy middle

    I sent my one of my sisters the article on Chronic Diarrhea and learned that she does take Welchol (colesevelam), a bile acid sequestrant you mentioned in an earlier article, which I didn't realize when I commented earlier in this thread. While she still has diarrhea at times, she commented that she needs to talk with her doctor as she feels it may now be contributing to the incidents of constipation she is having more frequently now.

    But you're right to be very concerned about bowel obstructions. While my parents had other health problems when they died, bowel obstructions were actually the precipitating cause in both of their deaths.

    I just switched to the bedtime dosing of Loperamide. I'm curious to see if it will help. I'd like to get back to taking walks in the morning as I did years ago, but haven't done since Metformin started my diarrhea issues that tend to occur in the morning.

  • MoeKay
    MoeKay Member Posts: 354 **
    edited April 30 #46
    cmb said:

    Too much or too little - seeking a happy middle

    I sent my one of my sisters the article on Chronic Diarrhea and learned that she does take Welchol (colesevelam), a bile acid sequestrant you mentioned in an earlier article, which I didn't realize when I commented earlier in this thread. While she still has diarrhea at times, she commented that she needs to talk with her doctor as she feels it may now be contributing to the incidents of constipation she is having more frequently now.

    But you're right to be very concerned about bowel obstructions. While my parents had other health problems when they died, bowel obstructions were actually the precipitating cause in both of their deaths.

    I just switched to the bedtime dosing of Loperamide. I'm curious to see if it will help. I'd like to get back to taking walks in the morning as I did years ago, but haven't done since Metformin started my diarrhea issues that tend to occur in the morning.

    Sorting out these bowel issues is no easy task

    cmb, since your sister now has both diarrhea and constipation, I'm wondering if her doctor will cut back the total dose or tweak the timing of her colesevelam doses (or do something else for the constipation).  The recommended daily dose is six 625 mg. tablets.  Since my doctor will only allow me to take three a day due to my obstruction history, he prescribed two in the morning and one at night.  However, because the majority of my issues are in the morning, I decided to change to two at night and one in the morning and my doctor told me that was fine.  I hope your sister is able to work things out, as it sounds as though she is getting some benefit from the colesevelam. 

    I'm interested to see how these calcium supplements and cutting down on too many high magnesium foods work for my situation.  It seems as though almost everything I have been eating up to this point turns out to be high in magnesium, and not likely a good practice for someone with frequent bowel movements and loose stools.  I'm not really sure how much bowel benefit I get from the colesevelam at this point, but if it's not helping my bowels, I hope it's at least doing something for the cholesterol. 

    I hope you see improvement in your situation from the Loperamide dose timing change.  While we all might not be able to find a perfect solution to these problems, I'm not willing to accept that, with a good deal of patience and persistence, we can't hit upon some solution that improves things. 

  • cmb
    cmb Member Posts: 751 **
    Loperamide (Imodium) Update

    Since Eldri's good news in another thread about how escitalopram is helping both her diarrhea and neuropathy, I wanted to update the comments I made here regarding Loperamide (Imodium). It's been some time since I switched from taking one tablet of Loperamide mid-morning as I had been doing for a few months to one tablet at 10:00 pm. But what I've found is that taking Loperamide at night often results in my waking up early to go the bathroom. And once I'm that awake, I usually can't go back to sleep. This is a problem since I now go to bed much later than when I was working full time.

    The once daily dose of Loperamide still helps to keep my diarrhea under control most of the time. But I'm not sure I'll stick with the nighttime dosing. Living on 4-5 hours of sleep is what I did for years when working and I'm not anxious to return to that schedule.

    But for you early risers out there, bedtime dosing might work better.

  • cmb
    cmb Member Posts: 751 **
    Added FAQ link

    FYI, I added links to this topic and Eldri's more recent update to the FAQ so that they are easier to find in the future.