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

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

It's been over five years since I finished my chemo; I never had radiation. There are some days when, as my friend says, I feel like I was "rode hard and put away wet." 

I know part of it is the chronic diarrhea but this fatigue is just so sporadic.  I felt great Saturday and Sunday but yesterday, I could hardly move and today it's the same. I take a shower and I have to rest; I get dressed and I have to rest. Along with that, my head feels like it's stuffed with cotton. 

This is nothing new and I realize I'm not getting any younger but I sure wish my doctor could figure out a way to get me out of this. Do they still prescribe "uppers?" I've tried to figure out a pattern to this - did I have a bad night; was the diarrhea worse; was I more active than normal? NOTHING - no pattern at all. I make plans with my husband or my friends but I never know if I'm going to be able to follow through. I see my doctor again next week but I suspect all my blood work and urinalysis will come back normal as they have for years. I've even changed my diet to add more protein and less sugar thinking maybe that could be it.

Any ideas that worked for you??

Love,

Eldri

jan9wils's picture
jan9wils
Posts: 173
Joined: Mar 2017

I struggle with this same issue. 

Jan

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

I was going to say I'm glad to hear this but no, I'm not because now two of us are miserable on those bad days. Maybe, for some people, it's just how it is. I see some women say, "Well it took me a year to get back to normal" but I now accept that's not going to happen to me. Maybe we can start a club, Jan? The "Just Let Me Sleep All Day" club??

Love,

Eldri

MAbound
Posts: 1160
Joined: Jun 2016

Is this something new?  There are so many possible causes for extreme fatigue that you have to think about. If it started within this past year, could you have had asymptomatic Covid? You summer in WI, so what about Lyme disease? Chronic fatigue syndrom is a possibiity, but so hard to get diagnosed. Could it be how much sleep you're not getting because of your neuropathy or from taking CBD oil long term from it? You might want to go to a sleep therapist to get help with this. It could be a mistake to treat the symptom without knowing the cause.

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

No, it's not something new. If it was I could understand it better. It's been ongoing but I think it's getting worse. I keep a little diary of my life and I think the "Lord, I'm really beat" days are becoming more frequent. My doctor had suggested I keep track of what I did the day or days before but there is absolutely no pattern. Some nights I don't sleep very well but the next day I'm ready to go. Other nights I sleep so good but can hardly move (or think) during the day. Same with the diarrhea - I'll have a day where I'm in the bathroom 10 or 12 times and I'm drinking Pedialyte because I'm shaking so bad and the next day I'm fine. No pattern, no change in medication and my labs are fine along with my A1c and my BP. I go for labs on Thursday and I always kind of hope they'll see something and can fix it. I take all the vitamins my doctors recommend and I even drag myself outside for some exercise thinking maybe that will make it better. Maybe this is just how the rest of my life is going to be and I work with the good days and just prop my feet up and rest on the bad? 

I see my husband slowing down - he'll be 70, but he has so much more energy than me and I'm younger (68). Before cancer, I was a dynamo. I know the stroke wiped out some of my brain and I've noticed my balance is not the best - LOL - I have no trouble getting my left foot into my undies in the morning but a h*ll of a time, standing on that left foot to get the right foot in. But again, some days my balance is better than others. And, come to think of it, it's the same with my eyesight; some days it's better than others!! 

But, at least I'm alive and knock-on-wood, the cancer hasn't come back!

Love,

Eldri

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

After reading your post i wonder if you are taking Metformin and it is giving you diarrhea.  I am taking it and get intermittent diarrhea.  I think the only thing i have found that makes a difference is only having one cup of coffee in the morning, and not my usual two.  I LOVE my coffee but sometimes I'm going out and need to make sure that doesn't happen.  I hope you can find out what is causing your diarrhea.  And your fatigue.  The list of causes is long.   Have you seen your family doctor about it.  I say this often, but sometimes the cancer doctor is not the best doctor for everything.

A great exercise for balance is standing in front of the dresser facing it.  Have your hands ready to grab the top, but don't, and lift one leg and balance for 20 seconds.  If you feel off balance grab the top of the dresser with both hands.  And then let go, until you work your self up to the 20 seconds.  Then try the other leg.  It took me about two weeks to get to 20 seconds.  I had nerve damage from a pinched nerve, and this was a great exercise for me.   

alicia2020
Posts: 164
Joined: Sep 2020

I can't offer anything helpful, but I wanted you to know I'm thinking about you and hoping you feel better. My fatigue issues are for different reasons than yours, but I certainly understand the frustration and worry.

Hugs & Love, 

Alicia

MoeKay
Posts: 356
Joined: Feb 2004

Hi Eldri, 

Sorry to hear about your extreme fatigue and other symptoms.  I'm wondering whether your GP has tested your B12 level.  Many of the symptoms you report are associated with a B12 deficiency.  The following is from https://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780

Vitamin B12 deficiency symptoms

Vitamin B12 deficiency can be slow to develop, causing symptoms to appear gradually and intensify over time. It can also come on relatively quickly. Given the array of symptoms a vitamin B12 deficiency can cause, the condition can be overlooked or confused with something else. Vitamin B12 deficiency symptoms may include:

 

  • strange sensations, numbness, or tingling in the hands, legs, or feet
  • difficulty walking (staggering, balance problems)
  • anemia
  • a swollen, inflamed tongue
  • difficulty thinking and reasoning (cognitive difficulties), or memory loss
  • weakness
  • fatigue

Also, in addition to diarrhea, a B12 deficiency is a potential side effect of Metformin.  See:  https://www.webmd.com/diabetes/metformin-side-effects

which states:

Vitamin B12 deficiency

A lack of this B vitamin can happen to anyone, but the risk is higher on metformin, especially over time.

Since you've been on Metformin for a while now, and your symptoms appear to be getting worse, if you haven't already ruled out a B12 deficiency, you may want to look into whether that may be causing or contributing to your issues. 

Good luck in getting to the bottom of things and feeling better soon!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1807
Joined: Jun 2015

Eldri, I started taking a statin for the first time 4 months ago. I have experienced fatigue and muscle pain since about day 4. I don't know if you are on a statin, but wanted to mention this to you. I'm waiting for a call back from my GP because I don't plan to live like this forever. I'm looking for an alternative to the statin drugs. My high cholesterol is hereditary and they tell me no amount of diet and exercise will bring it down. UGH! Anyway, I hope you find out what is causing your fatigue and that you find relief soon.

Love and Hugs,

Cindi

takingcontrol58
Posts: 264
Joined: Jan 2016

Cindi,

When you use a statin, it is important to take a CoQ10 supplement as well.  It is an enzyme vital to the production of energy in the body.
Statins cause your body to not absorb CoQ10, just like metformin prevents the absorption of Vitamin B12. This could very well
be the reason for your fatigue-statins are also known to cause muscle pain.

I had always had high cholesterol but never took a statin drug- I use the supplement Choleast by Thorne, which is made from
red yeast rice (which acts like a statin), which was recommended to me by my integrative oncologist.  You may want to try this
option instead of a statin or just start taking a CoQ10 supplement with your statin.  You can purchase the Choleast at www.thorne.com.

You can speak with your doctor about these supplement options.

Our body depends on  vitamins, minerals, enzymes, proteins and other factors so that everything functions properly- that is why
supplementation is so important to make sure we have adequate levels of these key building blocks of our cells.

Takingcontrol58

 

 

 

 

 

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1807
Joined: Jun 2015

Thank you so much for this information Takingcontrol58. It is very helpful. I actually left a message for my doctor 2 days ago and still have not gotten a call back. I left her one 3 weeks ago too and never received one.... Time to find a new GP. I started using CoQ10 a couple of weeks ago. It did help some with the fatigue and surprisingly got rid of the constant headache. But, didn't help the muscle and joint pain at all.  I made the decision last night to stop taking the statin. I'm hoping that the side effects will all resolve soon since I have only been on it for, 4 months. Really appreciate the information on an alternative to the statin. I'm going to order the Choleast today!

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

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.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1807
Joined: Jun 2015

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

 

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

Thanks, ladies, I really appreciate all your advice. I've gone off the metformin for a month in the past to see if it made a difference - I'm on the slow-release, 2000 mg. a day - and it didn't get any better or worse. I take 5000 mcg. of liquid B-12 every night on the advice of my doctor and I think it has helped with the pain of neuropathy. I also don't take any statins - my cholesterol has always been good except when I was on chemo. I think the chemo destroyed part of my stomach lining as I've had problems with esophageal erosion since the chemo. Once when I was hospitalized with esophagus problems, my nurse asked if I've always had such extreme diarrhea - LOL! And, you'd think I'd be skinny as a stick, but NOOOOOOOO!!! I can pretty much eat anything I want and I don't gain weight but I don't lose it either. 

One of the things I have noticed but this has been my whole life is I'm better in the evening. The diarrhea is better and so is the fatigue. I had a job when the kids were little proofreading environmental health reports in the evening. I did it so we didn't have to get a babysitter. I could tell that was the natural rhythm of my life but unfortunately, most of the world doesn't operate that way.

I'll let you know next week when I see my doctor if my labs tomorrow show anything abnormal.

Love,

Eldri

 

cmb's picture
cmb
Posts: 749
Joined: Jan 2018

Eldri, I can't offer any specific advice about fatigue since for me, fatigue has always been tied to how well (or not) I'm sleeping, except during chemo when the drugs wore me out. Others have made some good suggestions. I hope you and your doctor can pinpoint what's causing your fatigue.

But I've always had trouble sleeping, dating back to high school. The only time in my adult life when I slept well and wasn't tired during the day was when I went back to school full-time for a year.

I found then that my natural sleep pattern was to stay awake much later than I normally did and then wake up later in the morning. I felt great that entire year and also managed to lose a lot of weight after I had been diagnosed with Type 2 diabetes during that time. But as soon as I went back to work full-time, I had to abandon that schedule and revert to the "usual" bedtime/wake up times. And I often struggled with days where I lacked the energy to do even simple tasks, although project deadlines usually forced me to keep going.

However, now that I'm mostly retired, I've let my natural sleep pattern emerge again and I'm having very few days where I lack energy or feel tired during the day.

So based on your past experience with an "atypical" sleep schedule, can you adjust some of your daily activities to better fit your preferred sleep cycle? For myself, I just don't schedule calls or appointments in the morning anymore unless I just can't avoid it. 

MoeKay
Posts: 356
Joined: Feb 2004

Eldri, not to beat a dead horse here, but has your doctor actually tested your B12 level and is it normal?  The reason I ask is I'm wondering whether just stopping the Metformin for a month after having taken it for quite some time would be an adequate test period for things to go back to normal.  Also, while you're taking daily liquid B12, that has to go through your digestive tract, and the Metformin is known to reduce absorption of B12.  If you have additional gastrointestinal absorption issues as a result of your chemo as you describe above, it could be that you're not absorbing enough of the vitamin.  If the level is still low despite supplementation, you might need B12 injections for optimal absorption.  For those reasons, if I were in your situation, I would ask for a simple blood test to check your B12 level.  You may already know from testing that your B12 level is perfectly fine, but just failed to mention it in your post.  In that case, good luck with exploring other causes for your symptoms!

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

I just checked and the B12 is over 2000 which is way higher than it should be. I guess taking 2000 mcg. has caused that. A year ago it was 982 which is normal. I take the B12 because it helps my neuropathy. But my TSH is 5.73 which is high so my thyroid medication should probably be increased again. I'm at 175 mcg. right now. Maybe that will help the fatigue. My cholesterol is elevated too so maybe she'll put me back on simvastatin again at a low-dose level.

I see my doctor next Wednesday and I'll let you know what she says.

Love,

Eldri

cmb's picture
cmb
Posts: 749
Joined: Jan 2018

When I was having stomach pains a couple of years ago (not cancer-related) my gastroenterologist prescribed Dicyclomine for me to try. While that relieved the stomach pains, it didn't work as well for the diarrhea I've had ever since I started taking Metformin years ago (and was much worse during cancer treatment).

Since I wasn't having the stomach pains anymore, I decided to stop the Dicyclomine last year. Then I started taking one Loperamide (Imodium) tablet every (late!) morning with my other pills. This actually controls my diarrhea quite well.

Like Forherself, coffee is a trigger for me too although I don't limit my quantities of coffee. But I only drink the first cup when I'm near a bathroom. But the difference with the daily Loperamide is that I only have to go to the bathroom once. And I stop drinking coffee after lunch so that it doesn't interfere with my sleep later.

I've told my doctor that I'm taking the Lopermide once a day and she has okayed it for me.

I don't know whether Metformin has had any impact on keeping me cancer-free since treatment ended – I was already taking Metformin before I got cancer. But I continue with it versus another diabetes drug on the off-chance it helps deter recurrence for me, despite the diarrhea problem.

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

I take three Immodium every morning. Then another one each time I have an episode of diarrhea. If I didn't do that, I would have no life. I asked about Viberzi but can't take it because I don't have a gallbladder.  I haven't had a day in over five years I didn't have diarrhea but even before the chemo, I had "some" problems but nothing like this!!

Love,

Eldri

 

MoeKay
Posts: 356
Joined: Feb 2004

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. 

 

 

 

cmb's picture
cmb
Posts: 749
Joined: Jan 2018

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.

Tamlen's picture
Tamlen
Posts: 323
Joined: Jan 2018

Eldri, I'm sorry you're going through this. It sounds rough and like your body is just getting worn out by everything.

This is a long shot, and maybe you've already gone down this avenue, but have you ever had food allergy testing? About 20 years ago I had developed asthma that wasn't getting better with medication and looked like it was on a trajectory for getting worse. I was also not sleeping well and feeling fatigued all the time. After exhausting traditional medical routes, I finally found my way to a naturopath who ordered food allergy testing for me. Not all doctors believe this testing is "real" and poo poo it. My results came back showing me to be highly sensitive to a number of foods I ate all the time. I cut them from my diet completely for 6 months (difficult cooking for 6 months, since it was such a long list of potential problem foods) and then slowly re-introduced them, one by one. Most didn't seem to bother me, but about 5 foods that were a constant part of my diet (bananas, eggs, etc) immediately made me feel exhausted or bothered my airways. I cut those foods out and my asthma pretty much disappeared, along with the fatigue problem. Today, I do eat bananas and eggs again, but I am very cautious about how many I eat in a week. I need no asthma meds.

The whole experience taught me a lot about the ways the foods we eat influence inflammation, fatigue, and other chronic problems we face.

Big hug,
Tamlen

takingcontrol58
Posts: 264
Joined: Jan 2016

Eldri,

You mentioned that you take 5000mcg of B12 every day.  That is a very high dose to use every day.

Do you test your B12 regularly? It should ideally be in the range of 600-800. I have found with
being on metformin for many years. B12 levels do fluctuate alot. I take 2500mcg/daily to maintain levels in the
700s.  And sometimes I skip a day or two.

I bring this up because too much Vit B12 can cause diarrhea, and I am guessing your levels may be way too high.
Maybe this is the source of your diarrhea issues if you have been taking  this high of a dose of B12 for a long time.

You should check this out and have your doctor test your B12 levels.

Takingcontrol58

 

 

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

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

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

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.  

Candlewood
Posts: 16
Joined: Jun 2018

Have you been checking your oxygen levels at rest and then when you are up and moving around? If your level drops too much then that could be why you need to take a rest after exertion.

oldbeauty
Posts: 320
Joined: May 2012

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

cmb's picture
cmb
Posts: 749
Joined: Jan 2018

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.

LisaPizza's picture
LisaPizza
Posts: 345
Joined: Feb 2018

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's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

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

oldbeauty
Posts: 320
Joined: May 2012

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
Posts: 1160
Joined: Jun 2016

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%20can%20also%20be%20used,firmer%20and%20slower%20to%20pass.&text=Adding%20high%20fiber%20foods%20(such,help%20lower%20heart%20disease%20risk. (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
Posts: 1160
Joined: Jun 2016

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.

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yetti
Posts: 70
Joined: May 2019

I'm on metformin also. I take 2 daily 1000 mgs total.  They warned me about it causing diarreah i said I dare it too. !  Never did get diarreaha I have more issues in the opposite of it !  Especially with chemo ! Ugh.  I remember a thanks giving I just could not eat a thing Bc I hadn't been able to go 

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EZLiving66
Posts: 1480
Joined: Oct 2015

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

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TeddyandBears_Mom
Posts: 1807
Joined: Jun 2015

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
Posts: 356
Joined: Feb 2004

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

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cmb
Posts: 749
Joined: Jan 2018

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
Posts: 320
Joined: May 2012

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

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LisaPizza
Posts: 345
Joined: Feb 2018

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
Posts: 320
Joined: May 2012

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

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cmb
Posts: 749
Joined: Jan 2018

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
Posts: 320
Joined: May 2012

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
Posts: 356
Joined: Feb 2004

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!

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cmb
Posts: 749
Joined: Jan 2018

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
Posts: 356
Joined: Feb 2004

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. 

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cmb
Posts: 749
Joined: Jan 2018

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.

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cmb
Posts: 749
Joined: Jan 2018

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.

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