Non-stop diarrhea

irinaroyt
irinaroyt Member Posts: 10
in Colorectal Cancer #1

Hi, I am pretty new here. I am a woman of 69. Last December was diagnosed with colon cancer stage 4 which was mostly in my large intestine but also with mets to my liver. Had surgery in Dec., (they removed a chunk of my large intestine) and started chemo end of Jan. 2016. They gave me 4 different chemos plus I signed up for a research drug, Keytruda which was approved for melanoma but not colon. First 2 months it was OK, no major side effects except for neuropatia which only lasted for about a week. But it all changed on month 3. First my stool stopped being solid, then within few days diarrhea developped up to 10-12 a day. It's like my guts do not absorb any liquid at all. I told my oncologist that I need to stop chemo and research alltogether. Needless to say, he wasn't happy but I couldn't keep going. Some mentioned that it might be that chemo destroyed the good bacteria in my guts but I am not sure it takes so long to restore it.

Unfortunately it's been alsmost 4 month and diarrhea didn't stop. It's down from 10-12 times a day to 2-3 times a day (sometimes more). I took all the prescriptions and imodium over the counter but nothing really helps. Plus few weeks ago I've started having some nausea and loss of appetite.

Does anyone has any word of wisdom? Did anyone had diarrhea for so long? Please help!

Comments

  • lizard44
    lizard44 Member Posts: 409 Member
    #2
    How awful for you

    I haven't had a major problem with diarrhea while on chemo, just occasional bouts that respond well to  imodium or lomotil, thank goodness.   What you are going through sounds really  nasty. For  diarrhea to be as  bad and as long-lasting as yours, I wonder if it's something  more than  an ordinary side-effect.  Have you been tested for C. difficile?
    I've read that there is now evidence that  C. difficile can be caused not  only by antibiotics, but also by some chemo drugs, whether  they are given in conjunction with antibiotics or not.  Might be worth asking your doctor about. I hope you find some relief soon.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #3
    Hi Irinaroyt, I haven't had

    Hi Irinaroyt, I haven't had that kind of trouble, but I have heard they can transplant good bacteria in to your gi tract to repopulate it, the concept sounds kind of nasty, but I've heard it's a simple procedure. It might be worth looking into. I hope things improve for you....................Dave

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited July 2016 #4
    I have no idea if this is

    I have no idea if this is helpful inany way but I'll offer the information and you can do what you want with it. Years ago we had a young horse who developed sever diarrhea. She had it so bad she's shoot it out into her tail, it was all liquid. It was wintertime and her tail became a big block of solid diarrhea ice. Our vet had a radical idea. We were to buy a bunch of Metamucil. The stuff that you take when you're constipated. The thing with Metamucil is that it sits in the guy and absorns water and becomes basically a jelly. It then gives the digestive system something to work on that's somewhat solid. It kind of gets the bowels working properly again. It worked like a charm within a couple of days.

    Pushing a shopping cart through Wal-Mart with cans of store brand Metamucil and seeing the looks on people's faces ws fun, too. But you'd only need the one can. When I had IBS so bad before the cancer a woman I worked with had terrible constipation while I had terrible diarrhea all the time. We were on the same medication at one point. I wonder if this was why. 

  • John23
    John23 Member Posts: 2,122 Member
    edited July 2016 #5
    Keytruda Side effects

    Keytruda Side effects

    KEYTRUDA® (pembrolizumab)‎

    "Common side effects of Keytruda include fatigue, cough, nausea, itching, rash, decreased appetite, constipation, joint pain, and diarrhea. The recommended dose of Keytruda is 2 mg/kg administered as an intravenous infusion over 30 minutes every 3 weeks until disease progression or unacceptable toxicity.Jun 30, 2015"

    Uh.... huh?

    I love western pharmaceuticals~!

    You can try Grapefruit juice if it doesn't interfere with the other meds you take. Full, Heavy pulp Orange Juice can also slow things down almost as well as Grapefruit juice, without the interference with other meds.

    Lomotil, can work, but for me, I had to take the maximum dose and it made my legs feel like rubber, along with slowing down any other muscle/mechanical movement. Actually, hydrocodone (an opioid) works better than Lomotil without the mechanical problems and without having to do the maximum dose. But any opium derivative is addictive, so beware! An "Addiction" is where when you stop or decrease the dose, the symptoms come back, sometimes threefold... So you figure you need the med, because your problem isn't "gone". Of course, the problem really is: the symptom of stopping the dose. The symptom will be what you started taking the med for to begin with...... It is addictive. Very. It's difficult to know when you don't need it, if when you stop taking it the problems are worse. The Problems are worse because that is the side effect of stopping the med.

    Please, understand that. It is a major problem with most western medications and the FDA does not acknowledge that fact.

    Be well. Study and research what you take for a "solution".

    John

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    edited July 2016 #6
    glutamine & pancreatin ?

    Some people have used the amino acid supplement, L-glutamine, to help the cells lining their GI system on chemo.   We use it with vitamin C and prebiotics, in doses of 2-5 grams per day.   Cabbage juice (clear vs Vitamixed?) may also a possibility for this, as other digestive problems.  

    Folfiri patients some times use L-glutamine at 30 grams per day, like a tablespoon twice a day. There are medical papers from medical trials on this Folfiri application.

    Others here have used pancreatic enzymes for diarrhea problems, our previous discussion.

     

  • irinaroyt
    irinaroyt Member Posts: 10
    #7
    John23 said:

    Keytruda Side effects

    Keytruda Side effects

    KEYTRUDA® (pembrolizumab)‎

    "Common side effects of Keytruda include fatigue, cough, nausea, itching, rash, decreased appetite, constipation, joint pain, and diarrhea. The recommended dose of Keytruda is 2 mg/kg administered as an intravenous infusion over 30 minutes every 3 weeks until disease progression or unacceptable toxicity.Jun 30, 2015"

    Uh.... huh?

    I love western pharmaceuticals~!

    You can try Grapefruit juice if it doesn't interfere with the other meds you take. Full, Heavy pulp Orange Juice can also slow things down almost as well as Grapefruit juice, without the interference with other meds.

    Lomotil, can work, but for me, I had to take the maximum dose and it made my legs feel like rubber, along with slowing down any other muscle/mechanical movement. Actually, hydrocodone (an opioid) works better than Lomotil without the mechanical problems and without having to do the maximum dose. But any opium derivative is addictive, so beware! An "Addiction" is where when you stop or decrease the dose, the symptoms come back, sometimes threefold... So you figure you need the med, because your problem isn't "gone". Of course, the problem really is: the symptom of stopping the dose. The symptom will be what you started taking the med for to begin with...... It is addictive. Very. It's difficult to know when you don't need it, if when you stop taking it the problems are worse. The Problems are worse because that is the side effect of stopping the med.

    Please, understand that. It is a major problem with most western medications and the FDA does not acknowledge that fact.

    Be well. Study and research what you take for a "solution".

    John

     

    Keytruda Side effects

    Thank you so much, John. My onc mentioned that it could be from Keytruda but gave no advise. I will show your suggestions to my herbalist/acupancture specialist to see what he thinks.

  • irinaroyt
    irinaroyt Member Posts: 10
    edited July 2016 #8
    beaumontdave said:

    Hi Irinaroyt, I haven't had

    Hi Irinaroyt, I haven't had that kind of trouble, but I have heard they can transplant good bacteria in to your gi tract to repopulate it, the concept sounds kind of nasty, but I've heard it's a simple procedure. It might be worth looking into. I hope things improve for you....................Dave

    It's not nasty, just some

    It's not nasty, just some probiotics pills or capsules. I take some already. I guess, it does something - from 10-12 times a day down to 3-4.

  • irinaroyt
    irinaroyt Member Posts: 10
    #9
    JanJan63 said:

    I have no idea if this is

    I have no idea if this is helpful inany way but I'll offer the information and you can do what you want with it. Years ago we had a young horse who developed sever diarrhea. She had it so bad she's shoot it out into her tail, it was all liquid. It was wintertime and her tail became a big block of solid diarrhea ice. Our vet had a radical idea. We were to buy a bunch of Metamucil. The stuff that you take when you're constipated. The thing with Metamucil is that it sits in the guy and absorns water and becomes basically a jelly. It then gives the digestive system something to work on that's somewhat solid. It kind of gets the bowels working properly again. It worked like a charm within a couple of days.

    Pushing a shopping cart through Wal-Mart with cans of store brand Metamucil and seeing the looks on people's faces ws fun, too. But you'd only need the one can. When I had IBS so bad before the cancer a woman I worked with had terrible constipation while I had terrible diarrhea all the time. We were on the same medication at one point. I wonder if this was why. 

    Thank you so much
     

    Thank you so much

     

  • irinaroyt
    irinaroyt Member Posts: 10
    #10
    lizard44 said:

    How awful for you

    I haven't had a major problem with diarrhea while on chemo, just occasional bouts that respond well to  imodium or lomotil, thank goodness.   What you are going through sounds really  nasty. For  diarrhea to be as  bad and as long-lasting as yours, I wonder if it's something  more than  an ordinary side-effect.  Have you been tested for C. difficile?
    I've read that there is now evidence that  C. difficile can be caused not  only by antibiotics, but also by some chemo drugs, whether  they are given in conjunction with antibiotics or not.  Might be worth asking your doctor about. I hope you find some relief soon.

    Thank you so much! It could

    Thank you so much! It could be Clostridium Difficile Infection indeed. I've already take a good probiotic but so far it's just some improvments but diarrhea still there.

     

  • irinaroyt
    irinaroyt Member Posts: 10
    #11
    tanstaafl said:

    glutamine & pancreatin ?

    Some people have used the amino acid supplement, L-glutamine, to help the cells lining their GI system on chemo.   We use it with vitamin C and prebiotics, in doses of 2-5 grams per day.   Cabbage juice (clear vs Vitamixed?) may also a possibility for this, as other digestive problems.  

    Folfiri patients some times use L-glutamine at 30 grams per day, like a tablespoon twice a day. There are medical papers from medical trials on this Folfiri application.

    Others here have used pancreatic enzymes for diarrhea problems, our previous discussion.

     

    glutamine & pancreatin ?

    Isn't L-Glutamine feed cancer? Just like sugar makes it grow more? I read some very contravercial info about it.

  • John23
    John23 Member Posts: 2,122 Member
    #12
    Sugar

    Sugar

    That topic has been beat to a pulp on this board over the years.

    The body requires glucose to survive. If an attempt is made to deprive cancer of glucose by limiting the intake, the only thing that will be deprived, are the good cells. Making survival tougher for the good cells is never a good idea.

    Nearly every physician specializing in cancer makes that same claim regarding glucose.

    We have cancer because our immune system allowed the defective cell to remain, instead of removing it quickly as most well functioning immune systems do.

    Anything that helps our immune system helps our survival. It might not change our immune system's response to a defective cell, but it can help our immune system fight other diseases related to the cancer's toll.

    And IF.... If the immune system manages to become sensitized to the chemicals expelled from a cancer cell, it's best to have the system as healthy and strong as it can get to do the job.

    Best hopes for you,

    John

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #13
    irinaroyt said:

    glutamine & pancreatin ?

    Isn't L-Glutamine feed cancer? Just like sugar makes it grow more? I read some very contravercial info about it.

    aim

    We think it is a good idea to cut down on gross sugar, starch and particularly fructose sugar in excess.  Sugar also stimulates IGF-1.  However you do have to meet the needs of body functions. GI repair is important for maintaining all oral intakes.

    Personally I wonder if the medical papers are a little high with the 30 gram glutamine dose for Folfiri. However  lower doses of glutamine will presumably be most efficiently utilized on the GI surfaces first, rather than transported deeper internally until excess occurs.  Using glutamine directly allows you to skip the extra sugar intake needed to be present or to be formed internally and then transported back to the GI surfaces.   

  • irinaroyt
    irinaroyt Member Posts: 10
    edited July 2016 #14
    John23 said:

    Sugar

    Sugar

    That topic has been beat to a pulp on this board over the years.

    The body requires glucose to survive. If an attempt is made to deprive cancer of glucose by limiting the intake, the only thing that will be deprived, are the good cells. Making survival tougher for the good cells is never a good idea.

    Nearly every physician specializing in cancer makes that same claim regarding glucose.

    We have cancer because our immune system allowed the defective cell to remain, instead of removing it quickly as most well functioning immune systems do.

    Anything that helps our immune system helps our survival. It might not change our immune system's response to a defective cell, but it can help our immune system fight other diseases related to the cancer's toll.

    And IF.... If the immune system manages to become sensitized to the chemicals expelled from a cancer cell, it's best to have the system as healthy and strong as it can get to do the job.

    Best hopes for you,

    John

     

    Thank you, so much John. It's

    Thank you, so much John. It's nice to have a qualified advise.

  • irinaroyt
    irinaroyt Member Posts: 10
    #15
    tanstaafl said:

    aim

    We think it is a good idea to cut down on gross sugar, starch and particularly fructose sugar in excess.  Sugar also stimulates IGF-1.  However you do have to meet the needs of body functions. GI repair is important for maintaining all oral intakes.

    Personally I wonder if the medical papers are a little high with the 30 gram glutamine dose for Folfiri. However  lower doses of glutamine will presumably be most efficiently utilized on the GI surfaces first, rather than transported deeper internally until excess occurs.  Using glutamine directly allows you to skip the extra sugar intake needed to be present or to be formed internally and then transported back to the GI surfaces.   

    Thank you tanstaafl! When you

    Thank you tanstaafl! When you are saying "using glutamine directly" do you have enema in mind or by mouth? Right now I am drinking it as a 1 tablespoon a day mixed with water.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #16
    tanstaafl said:

    aim

    We think it is a good idea to cut down on gross sugar, starch and particularly fructose sugar in excess.  Sugar also stimulates IGF-1.  However you do have to meet the needs of body functions. GI repair is important for maintaining all oral intakes.

    Personally I wonder if the medical papers are a little high with the 30 gram glutamine dose for Folfiri. However  lower doses of glutamine will presumably be most efficiently utilized on the GI surfaces first, rather than transported deeper internally until excess occurs.  Using glutamine directly allows you to skip the extra sugar intake needed to be present or to be formed internally and then transported back to the GI surfaces.   

    oral

    We've used glutamine orally, 1 - 3 times a day, pill or powder, 1-5 grams total.  Never heard of a glutamine enema, some have tried sodium butyrate enema for CC.  Our chemo is less toxic than Folfiri.    

    Secondarily, oral and intravenous vitamin C cover a lot of chemo problems.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    edited July 2016 #17
    irinaroyt said:

    It's not nasty, just some

    It's not nasty, just some probiotics pills or capsules. I take some already. I guess, it does something - from 10-12 times a day down to 3-4.

    I"m presuming that the oral

    I"m presuming that the oral route is not working well enough, and am therefore suggesting maybe they can directly plant the normal flora as I've read about, apperently to good results.................................................Dave

  • John23
    John23 Member Posts: 2,122 Member
    #18

    Re: "qualified advise"

    I doubt you're in any majority in suggesting my advice is "qualified", but I thank you for the very gracious compliment!

    I can only recite what I've come to believe is the most logical truth from individuals that are well schooled in the matter. But anyone's acceptance of "qualification" can be very subjective to another's opinion of what is "qualified". (haha) 
    "It depends on what the meaning of "is", is".

    The facts can so easily be obfuscated when an industry decides it should be.

    Thanks, and best of health to you!

    John

     

  • irinaroyt
    irinaroyt Member Posts: 10
    #19
    tanstaafl said:

    oral

    We've used glutamine orally, 1 - 3 times a day, pill or powder, 1-5 grams total.  Never heard of a glutamine enema, some have tried sodium butyrate enema for CC.  Our chemo is less toxic than Folfiri.    

    Secondarily, oral and intravenous vitamin C cover a lot of chemo problems.

    Oral

    I take L-Glutamine orally too, 1 table spoon /cup of water a day. Maybe I should try to take it more than once a day, hopefully it will help with diarrhea

  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #20
    opium

    tincture of opium helped me a bit when Imodium and Lomotil did nothing.  slows things down to allow for more time for the liquids to be absorbed.  the downside is ofc you are taking opium.

    best wishes

    rick

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