Fatigue and diarrehea control

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reckte
reckte Member Posts: 13
edited March 2014 in Colorectal Cancer #1
Posting this message September 19th, 3:30 pm PST.

My husband is 49 yrs old and was diagnosed with rectal cancer. So far he has gone through chemoradiation treatment, had surgery for rectal removal and currently has a ileostomy bag. Right now he is going through chemo treatment. He receives an oxiplatin infusion and then the day he gets his infusion, he begins taking Xeloda pills (7 pills per day). He has been through two cycles so far (one infusion, pills for 14 days, 7 days off, then another infusion/pills).

The first two rounds were going fairly well but near the end of this last round things started not going well. First his feet were really bothering him (hand/foot syndrom), no blisters but very tender. That has subsided some. Right now he has a lot of fatigue, some nausea and very low appetite. He also has to empty his bag alot. The bag is also puffing up alot. The doctor currently has him on tincture of opium liquid to try to stop the diarrehea. However, with the bag (just started the drops one day ago) it is had to tell if it is working (and it is not helping with his fatigue). He is also very light headed when he stands up. Trying to get him to drink as many fluids as possible and making him food he thinks he will like eating.

Our main questions right now are:

How many times a day to empty the bag would be considered "normal"?
Does the liquid he consumes directly effect the output to the bag?
Any suggestions to the diet that could help him feel better? The diet part is confusing because some of the "good foods" that he should eat also can cause diarrehea

Am trying to reach out to find someone that is going through this or has gone through this. Looking things up on the internet can be good but also confusing.

At this point, he is so not looking forward to the beginning of the next round in three days. We need to get him stronger but need some reality guidelines.

We have been doing some other things but do not want to over load my first post. Any information to get us started in the right direction would be very helpful.

Thank you,
Diane

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
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    I am sorry your husband is having such a hard time of it
    the diarrhea can really bring a person down. It is VERY important that he stay hydrated, and with the dizziness, it sounds like he isn't keeping enough fluids in; he might need IV fluids. Ask about a shot of Sandostatin, it should help with the diarrhea. I don't think they should continue with the next treatment if his diarrhea isn't under control. I don't have a bag, but the diarrhea did really get me down; I was an emotional wreck since the diarrhea would tire my body out tremendously. Hyoscyamine really helped me, it's an antispasmodic, but I would imagine the tincture of opium should do the trick as well; seems to me Rick Murtagh has had experience with that here on the board. Welcome to the board, and I sure hope things start to look up soon! Stay strong and see what his doctors say about getting fluids in.
    mary
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Ostomy
    I had an ileostomy so my output per day was around 8 times, more during chemo. Yes, what you drink does affect your output, especially if he has an ileostomy as most of the water goes right through you to the bag. The oxi cocktail is a hard chemo and his symptoms are pretty normal. Not having much of an appetite is a common side effect. Try to give him soup as this is good for him and he will be able to tolerate it. My cravings for watermelon and muskmelon were overwhelming so that would be a good thing for him to snack on too. Make sure he gets lots of naps when he can. This chemo will drain you fast but he can get through it. Try the soup though. It goes down easy. Keep us posted.

    Kim
  • Patteee
    Patteee Member Posts: 945
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    Hi, I had a colostomy and
    Hi, I had a colostomy and fortunately little if no diarrhea.

    2 things though- I was not able to tolerate much if any in the way of food or liquid. Starting about treatment number 5-6 I started getting toxic on the oxil- they started to decrease it then and then I started to get IV fluids. One of the things I could do was Ensure or Boost- I would warm it up in the mic, add a bit of cinnamon and nurse that bit for a few hours.

    I also had the hand and foot syndrome. No fun. Ask the oncologist for samples of lotions- that would help to keep my feet from cracking. I did end up losing my nails- oxil is pretty brutal on the body.

    I would encourage you to let the oncologist know exactly what is going on. These symptoms are what help them to adjust chemo doses.
  • John23
    John23 Member Posts: 2,122 Member
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    Diane -
    Kim gave you good advice....

    With an ileostomy, the output is never thicker than thick gravy,
    and can be near total liquid most of the time.

    High carb foods (pasta, etc) will thicken output, while low or zero carb
    foods (meats, etc) will produce more liquid.

    There will be bouts of what's called a "dumping syndrome", where
    what you eat will go into the bag within 15-20 minutes. These bouts
    can be a few times a month, and/or lasting for weeks.

    As an ileostomate, we are always on the edge of dehydration,
    since the loss of fluids is near constant, and there is no colon to
    recycle the liquid. The ileum can not absorb more liquid than it
    was intended to, to take the place of the colon's duty.

    Drinking 4-6 ounces of water every hour, can offset the loss,
    but once dehydrated, it's a difficult job to get re-hydrated; the
    system is no longer "normal", and does no longer function like other's
    do.... and an ileostomy is very different than a colostomy, so advice
    from a colostomate won't necessarily be suited for an ileostomate.

    Beginning stages of dehydration will not be readily indicated.
    There will not be an increased thirst, or darker urine, or other
    "common" signs. There will be fatigue, loss of energy, heart
    arythemia, dizziness, etc, typically. Blood tests will not indicate
    the beginning dehydration. An ileostomate is subject to kidney
    stones and bladder stones as a result of both deydration and
    the loss of minerals and nutrients needed to stabilize the kidney
    functions.

    Doctors and nurses do not always understand the problems of
    an ileostomate, or the nature of the ileostomy. They will often prescribe
    slow release medicine, not fully understanding that the medication will
    not get absorbed, and will end up in the pouch undissolved.

    If you do a search on this forum, for "ileostomy", you should find
    many references to what's been said here.

    You can also get some info at the UOAA forum. Most individuals
    there are not cancer victims, and feel differently about having
    an ostomy, but they do have decent advice. (Look up "Terry" from
    the UK at that site. He's got a ton of good info.)

    If I can be of any help, just give a yell.... There are easier ways to
    do anything, and I've found some easier ways to deal with an ileo.

    Good luck!!

    John
  • reckte
    reckte Member Posts: 13
    Options
    msccolon said:

    I am sorry your husband is having such a hard time of it
    the diarrhea can really bring a person down. It is VERY important that he stay hydrated, and with the dizziness, it sounds like he isn't keeping enough fluids in; he might need IV fluids. Ask about a shot of Sandostatin, it should help with the diarrhea. I don't think they should continue with the next treatment if his diarrhea isn't under control. I don't have a bag, but the diarrhea did really get me down; I was an emotional wreck since the diarrhea would tire my body out tremendously. Hyoscyamine really helped me, it's an antispasmodic, but I would imagine the tincture of opium should do the trick as well; seems to me Rick Murtagh has had experience with that here on the board. Welcome to the board, and I sure hope things start to look up soon! Stay strong and see what his doctors say about getting fluids in.
    mary

    Mary,
    He started the tinture

    Mary,

    He started the tinture of opium just yesterday, hoping it will kick in soon. He is trying to drink as much as possible, just doesn't stay in.

    Seems like the board will be a very helpful tool.

    Diane
  • reckte
    reckte Member Posts: 13
    Options
    Patteee said:

    Hi, I had a colostomy and
    Hi, I had a colostomy and fortunately little if no diarrhea.

    2 things though- I was not able to tolerate much if any in the way of food or liquid. Starting about treatment number 5-6 I started getting toxic on the oxil- they started to decrease it then and then I started to get IV fluids. One of the things I could do was Ensure or Boost- I would warm it up in the mic, add a bit of cinnamon and nurse that bit for a few hours.

    I also had the hand and foot syndrome. No fun. Ask the oncologist for samples of lotions- that would help to keep my feet from cracking. I did end up losing my nails- oxil is pretty brutal on the body.

    I would encourage you to let the oncologist know exactly what is going on. These symptoms are what help them to adjust chemo doses.

    Hi,
    I do have Boost

    Hi,

    I do have Boost available to him, might have one a day. Also having him drink the V8 Fusion, appears to be a good source for the vegetable and fruit benefits. Also taking a chewable multi-vitamin daily.

    Will talk to the oncologist regarding the hand and foot syndrome.

    Am sure the chemo will be adjusted as his weight has dropped about 25 lbs from when he first started. Hopefully that will also help with some of the symptoms.

    Diane
  • reckte
    reckte Member Posts: 13
    Options
    John23 said:

    Diane -
    Kim gave you good advice....

    With an ileostomy, the output is never thicker than thick gravy,
    and can be near total liquid most of the time.

    High carb foods (pasta, etc) will thicken output, while low or zero carb
    foods (meats, etc) will produce more liquid.

    There will be bouts of what's called a "dumping syndrome", where
    what you eat will go into the bag within 15-20 minutes. These bouts
    can be a few times a month, and/or lasting for weeks.

    As an ileostomate, we are always on the edge of dehydration,
    since the loss of fluids is near constant, and there is no colon to
    recycle the liquid. The ileum can not absorb more liquid than it
    was intended to, to take the place of the colon's duty.

    Drinking 4-6 ounces of water every hour, can offset the loss,
    but once dehydrated, it's a difficult job to get re-hydrated; the
    system is no longer "normal", and does no longer function like other's
    do.... and an ileostomy is very different than a colostomy, so advice
    from a colostomate won't necessarily be suited for an ileostomate.

    Beginning stages of dehydration will not be readily indicated.
    There will not be an increased thirst, or darker urine, or other
    "common" signs. There will be fatigue, loss of energy, heart
    arythemia, dizziness, etc, typically. Blood tests will not indicate
    the beginning dehydration. An ileostomate is subject to kidney
    stones and bladder stones as a result of both deydration and
    the loss of minerals and nutrients needed to stabilize the kidney
    functions.

    Doctors and nurses do not always understand the problems of
    an ileostomate, or the nature of the ileostomy. They will often prescribe
    slow release medicine, not fully understanding that the medication will
    not get absorbed, and will end up in the pouch undissolved.

    If you do a search on this forum, for "ileostomy", you should find
    many references to what's been said here.

    You can also get some info at the UOAA forum. Most individuals
    there are not cancer victims, and feel differently about having
    an ostomy, but they do have decent advice. (Look up "Terry" from
    the UK at that site. He's got a ton of good info.)

    If I can be of any help, just give a yell.... There are easier ways to
    do anything, and I've found some easier ways to deal with an ileo.

    Good luck!!

    John

    The hydration is our biggest
    The hydration is our biggest fear and problem. He did go to the City of Hope yesterday for some IV fluids. Not really kicking in as we had hoped. My husband has not seen the post and the replies yet. I think it will help just knowing we are not "alone". I appreciate your time and advice.

    Diane
  • reckte
    reckte Member Posts: 13
    Options

    Ostomy
    I had an ileostomy so my output per day was around 8 times, more during chemo. Yes, what you drink does affect your output, especially if he has an ileostomy as most of the water goes right through you to the bag. The oxi cocktail is a hard chemo and his symptoms are pretty normal. Not having much of an appetite is a common side effect. Try to give him soup as this is good for him and he will be able to tolerate it. My cravings for watermelon and muskmelon were overwhelming so that would be a good thing for him to snack on too. Make sure he gets lots of naps when he can. This chemo will drain you fast but he can get through it. Try the soup though. It goes down easy. Keep us posted.

    Kim

    Kim,Thank you for the
    Kim,

    Thank you for the input. Soup has been a good staple for him. I made my first batch of home made egg drop soup for him today, he did like it. I actually bought some watermelon today, he hasn't been a big melon eater, but hopefully your encourgement will help.

    He does nap a lot. I'm not sure how much to encourage him to get up and around. It's hard for him because he does get dizzy. Just don't think it's good to get too much rest.

    I'll keep you posted.

    Diane
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Options
    reckte said:

    The hydration is our biggest
    The hydration is our biggest fear and problem. He did go to the City of Hope yesterday for some IV fluids. Not really kicking in as we had hoped. My husband has not seen the post and the replies yet. I think it will help just knowing we are not "alone". I appreciate your time and advice.

    Diane

    Hi Diane
    You mentioned that he is having soup. How about try making soup with a coconut milk base? The coconut will help with diarrhea and tastes good too!
  • John23
    John23 Member Posts: 2,122 Member
    Options
    reckte said:

    The hydration is our biggest
    The hydration is our biggest fear and problem. He did go to the City of Hope yesterday for some IV fluids. Not really kicking in as we had hoped. My husband has not seen the post and the replies yet. I think it will help just knowing we are not "alone". I appreciate your time and advice.

    Diane

    Diane -
    Re:
    "He started the tinture of opium just yesterday"
    "The doctor currently has him on tincture of opium liquid to try to stop the diarrehea. "

    Egads.

    First of all, Opium is going to make him fatigued, and it'll slow
    the rate of absorption of the intestines. He's dizzy all right; he's
    looped. He also sounds like he's dehydrated.

    I don't know why so many physicians don't understand what
    an ileostomy is; how it acts. They seem to think that liquid output
    is "diarrhea".... Liquid output is frikkin' normal. You can't fix
    a non-existent problem without making more problems. UGH.

    There is a valve called an "ileocecal valve" between the ileum
    and cecum (the beginning of the colon). When they give you
    an ileostomy, the ileocecal valve goes with the colon; you lose it.

    The ileocecal valve keeps bacteria and waste in the colon from
    backing up into the ileum, and....... it also acts as a valve that your
    body uses to help control the flow of product from the ileum into
    the colon.

    Without that valve, product is not controlled, and goes as fast as it
    can from the mouth to the pouch. It usually takes about four hours
    for product to move from mouth to colon, but without that valve,
    it can go through in 15 minutes. That ain't "diarrhea", it's what happens
    when you screw with mother nature...

    Aaarrrraagghhh.

    Ok..... You really, really ought to get other opinions from other
    qualified physicians that know something about ileostomies.
    You really should get other opinions.

    That said..... I have had an ileo since my hospital stay almost
    4 years ago. It takes awhile for the system to find it's way
    after being poked and shoved and twisted, and having major
    sections removed. For a awhile, there are going to be days/weeks
    and months of what nothing can seem to control. It's normal.

    Taking medications in an attempt to control it will make the problem
    worse, and it will take longer for the system to settle into it's new normal.

    Print this out, and whack your physician in the head with it, after
    wrapping it around a rock.

    Your guy will slowly start to feel better as time goes on, unless
    the chemo is doing the damage.. then all bets are off. But if he
    continues taking things to try to cure "diarrhea", he's going to
    be like this for quite awhile longer than most others.

    His system is attempting to find itself; stop confusing it more.

    (whew)

    John
  • reckte
    reckte Member Posts: 13
    Options
    John23 said:

    Diane -
    Re:
    "He started the tinture of opium just yesterday"
    "The doctor currently has him on tincture of opium liquid to try to stop the diarrehea. "

    Egads.

    First of all, Opium is going to make him fatigued, and it'll slow
    the rate of absorption of the intestines. He's dizzy all right; he's
    looped. He also sounds like he's dehydrated.

    I don't know why so many physicians don't understand what
    an ileostomy is; how it acts. They seem to think that liquid output
    is "diarrhea".... Liquid output is frikkin' normal. You can't fix
    a non-existent problem without making more problems. UGH.

    There is a valve called an "ileocecal valve" between the ileum
    and cecum (the beginning of the colon). When they give you
    an ileostomy, the ileocecal valve goes with the colon; you lose it.

    The ileocecal valve keeps bacteria and waste in the colon from
    backing up into the ileum, and....... it also acts as a valve that your
    body uses to help control the flow of product from the ileum into
    the colon.

    Without that valve, product is not controlled, and goes as fast as it
    can from the mouth to the pouch. It usually takes about four hours
    for product to move from mouth to colon, but without that valve,
    it can go through in 15 minutes. That ain't "diarrhea", it's what happens
    when you screw with mother nature...

    Aaarrrraagghhh.

    Ok..... You really, really ought to get other opinions from other
    qualified physicians that know something about ileostomies.
    You really should get other opinions.

    That said..... I have had an ileo since my hospital stay almost
    4 years ago. It takes awhile for the system to find it's way
    after being poked and shoved and twisted, and having major
    sections removed. For a awhile, there are going to be days/weeks
    and months of what nothing can seem to control. It's normal.

    Taking medications in an attempt to control it will make the problem
    worse, and it will take longer for the system to settle into it's new normal.

    Print this out, and whack your physician in the head with it, after
    wrapping it around a rock.

    Your guy will slowly start to feel better as time goes on, unless
    the chemo is doing the damage.. then all bets are off. But if he
    continues taking things to try to cure "diarrhea", he's going to
    be like this for quite awhile longer than most others.

    His system is attempting to find itself; stop confusing it more.

    (whew)

    John

    John,
    Wow, tell me how you

    John,

    Wow, tell me how you really feel... :) This reply is super. It really makes sense. He is being treated by the City of Hope so you would think they would give us the best guidelines. However, a doctor seems to be a doctor. I read your reply to my husband and he agrees. He is going to stop with the tincture of opium and the Lomitril because they do not seem to be working. He just started the opium drops yesterday but today he has had about zero energy and the flow is not slowing. He would like to know if there is a way to stop the puffing up of the bag but don't want to keep throwing things in his system. Some people have suggested Beano and GasX but just not sure. Sounds like what we need to do now is make sure he is drinking healthy liquid every hour, about six ounces. Eat a balanced diet as well as he can. Am going to have him keep taking the multi-vitamins, would think that would be ok. He did get a fluid IV at the COH Friday. He is due for his next round beginning Wednesday. Need to help him feel at least a little better.

    However, not sure where to reach out for another opinion, have always been told COH is top notch.

    I'll post how he is doing and thank you so very much for the honesty!

    Diane
  • John23
    John23 Member Posts: 2,122 Member
    Options
    reckte said:

    John,
    Wow, tell me how you

    John,

    Wow, tell me how you really feel... :) This reply is super. It really makes sense. He is being treated by the City of Hope so you would think they would give us the best guidelines. However, a doctor seems to be a doctor. I read your reply to my husband and he agrees. He is going to stop with the tincture of opium and the Lomitril because they do not seem to be working. He just started the opium drops yesterday but today he has had about zero energy and the flow is not slowing. He would like to know if there is a way to stop the puffing up of the bag but don't want to keep throwing things in his system. Some people have suggested Beano and GasX but just not sure. Sounds like what we need to do now is make sure he is drinking healthy liquid every hour, about six ounces. Eat a balanced diet as well as he can. Am going to have him keep taking the multi-vitamins, would think that would be ok. He did get a fluid IV at the COH Friday. He is due for his next round beginning Wednesday. Need to help him feel at least a little better.

    However, not sure where to reach out for another opinion, have always been told COH is top notch.

    I'll post how he is doing and thank you so very much for the honesty!

    Diane

    Gas.....


    Not eating will cause gas. So if he can eat a big breakfast,
    and a big lunch, and a modest dinner (before 5pm), and snacks
    in between, he should begin to see some improvement.

    It's when we don't eat, that the gas seems to build up...

    And doing away with carbonated beverages for awhile would
    be best! No beer!! Anything that caused gas before, is going to
    still cause gas now... only it's going to fill up the pouch instead
    of scaring the cat, and making the house stink.

    The Coloplast Assura series I use, seems to have a decent filter
    that actually works for more than a day. I use the 2 piece system,
    and change an "extended wear" wafer every two to three weeks.
    I change the pouches as needed; they usually last a week or more.

    There are all sorts of tricks to do that will greatly extend the
    "wear-time"! Not changing the wafer (or appliance) too often,
    can save the skin from wear and tear also.

    But get the system stabilized first. Once he gets rid of the meds
    that are being used to force the system into compliance, the system
    will magically respond willingly. It takes time to adjust to the
    new "norm". Don't panic, it -will- happen.

    You guys stay well!

    John