diarrhea

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Not a pretty subject. BUT...Did anyone have chronic diarrhea from 5 F U. Docs have prescribed immodium, lomotil and nothing is stopping it. Mouth sores from 5 F U are so horrendous that we are back on PEG tube for most of nutrition. We were making progress until this "episode" and now very discouraged. Nothing tastes right and the sores make eating extremely difficult. HELP!!!
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  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    5FU
    Didn't have any of those from the 5FU or any other. Sorry you guys are going through this. Main thing is to keep the MD's involved and communicate.

    Also, very important, keep him hydrated, especially with the diarrhea going on.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Robin
    Diarrhea for me it was just the opposite I was always plugged up and had to take meds to keep the bowel moving. On the mouth sores and eating they too are just part of the healing effects, it got to get worse before it gets better. Don’t get discouraged it is just a part of going through the treatment, soon you will be finished and looking back on all of this.

    Wishing you the best

    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
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    Hondo said:

    Hi Robin
    Diarrhea for me it was just the opposite I was always plugged up and had to take meds to keep the bowel moving. On the mouth sores and eating they too are just part of the healing effects, it got to get worse before it gets better. Don’t get discouraged it is just a part of going through the treatment, soon you will be finished and looking back on all of this.

    Wishing you the best

    Hondo

    Hugs
    Robin,
    So sorry you are going through this. Sending hugs and prayers for you both. I add a double encouragement to keep hydration high. It causes all sorts of additional problems.

    Praying for relief.

    Debbie
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Mouth sores
    Has he tried the LGlutamine powder? One heaped tsp in an 8 ounce glass of water and swish and swallow.
  • arndog64
    arndog64 Member Posts: 537
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    Mouth sores
    Has he tried the LGlutamine powder? One heaped tsp in an 8 ounce glass of water and swish and swallow.

    Watch out for dehydration..
    Watch out for dehydration.. I hope y'all find some relief soon.
  • DrMary
    DrMary Member Posts: 531 Member
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    Shot in the dark
    Have they tried fluconazole (or another antifungal?) Both the sores and the diarrhea could be symptoms of a bad candida outbreak.

    That, by the way, is a total shot in the dark, but it is the first thing that came to my mind (I'm a chemist, not a "doctor" so my intuition is not necessarily useful). The second thing to come to mind is that the mouth sores are caused by something else and the diarrhea is bacterial in nature - that should be easier to check on, however.

    For immediate relief of the sores, however - Doug found both "magic mouthwash" and straight lidocaine (painted on with a q-tip) helped a lot. He couldn't tolerate much more than oxycodone, but I hear the stronger pain-killers (like the Fentanyl patch, or liquid hydromorphine) can help, and they also tend to slow bowel contractions.

    This sounds like a lot of not fun - best wishes for a resolution coming your way, and keep us posted.
  • Hondo
    Hondo Member Posts: 6,636 Member
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    DrMary said:

    Shot in the dark
    Have they tried fluconazole (or another antifungal?) Both the sores and the diarrhea could be symptoms of a bad candida outbreak.

    That, by the way, is a total shot in the dark, but it is the first thing that came to my mind (I'm a chemist, not a "doctor" so my intuition is not necessarily useful). The second thing to come to mind is that the mouth sores are caused by something else and the diarrhea is bacterial in nature - that should be easier to check on, however.

    For immediate relief of the sores, however - Doug found both "magic mouthwash" and straight lidocaine (painted on with a q-tip) helped a lot. He couldn't tolerate much more than oxycodone, but I hear the stronger pain-killers (like the Fentanyl patch, or liquid hydromorphine) can help, and they also tend to slow bowel contractions.

    This sounds like a lot of not fun - best wishes for a resolution coming your way, and keep us posted.

    Wishing
    Yep wish I could get a little of the diarrhea, but you can keep the mouth sores, oh how I remember how they hurt.

    Hondo
  • connieprice1
    connieprice1 Member Posts: 300 Member
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    C.diff can be life threatening
    Robin, My wife Connie did induction chemotherapy which consisted of cisplatin, doxotacel, cetuximab and then the 5FU via the infusion pump for 4 days. She was suppose to do 9 weeks of chemo, the 1st week the cocktail of chemo drugs, the 2nd week just cetuximab alone and the 3rd week off. This regiment was to be repeated 3 times. After her second treatment and during the 2nd time with the 5FU infusion pump, Connie developed severe diarrhea. After the 2nd day of the diarrhea I took her to the emergency room and she was admitted for the night and later in the night she told me to go home and get some sleep. The next morning I got up and headed to the hospital, to my surprise Connie was in isolation with C. diff or Clostridium Difficile. It is a bacterial infection and can have serious complications. In Connie's case the C. diff caused her to get colitus which can cause the colen to swell and stop funtioning. If you notice blood in your stool, you should head for the emergency room immediately because Connie was in the hospital for 34 days and although the doctors never told me, her life was in danger the whole time. Connie never did anymore chemo due to these complications. One thing that bothered me from the beginning was the hospital never turned off that 5FU infusion pump. Afterwards she did a CT scan to check her colon to make sure she was well and I mentioned I thought the chemo caused this whole fiasco and her chemo doctor looked me right in the eye and said chemotherapy did not cause the C.diff or colitus. I later found out that the infection was directly related to the chemo. I am not trying to scare you but I wanted you to be aware of these complications. Be Safe, Homer & Connie
  • robinleigh
    robinleigh Member Posts: 297
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    C.diff can be life threatening
    Robin, My wife Connie did induction chemotherapy which consisted of cisplatin, doxotacel, cetuximab and then the 5FU via the infusion pump for 4 days. She was suppose to do 9 weeks of chemo, the 1st week the cocktail of chemo drugs, the 2nd week just cetuximab alone and the 3rd week off. This regiment was to be repeated 3 times. After her second treatment and during the 2nd time with the 5FU infusion pump, Connie developed severe diarrhea. After the 2nd day of the diarrhea I took her to the emergency room and she was admitted for the night and later in the night she told me to go home and get some sleep. The next morning I got up and headed to the hospital, to my surprise Connie was in isolation with C. diff or Clostridium Difficile. It is a bacterial infection and can have serious complications. In Connie's case the C. diff caused her to get colitus which can cause the colen to swell and stop funtioning. If you notice blood in your stool, you should head for the emergency room immediately because Connie was in the hospital for 34 days and although the doctors never told me, her life was in danger the whole time. Connie never did anymore chemo due to these complications. One thing that bothered me from the beginning was the hospital never turned off that 5FU infusion pump. Afterwards she did a CT scan to check her colon to make sure she was well and I mentioned I thought the chemo caused this whole fiasco and her chemo doctor looked me right in the eye and said chemotherapy did not cause the C.diff or colitus. I later found out that the infection was directly related to the chemo. I am not trying to scare you but I wanted you to be aware of these complications. Be Safe, Homer & Connie

    Thank you
    Doc found a bacterial infection and my husband began treatment for it yesterday and there is already sloop much improvement. They decided to hold off on his chemo treatment this week because his body was so deployed from 11 days of diarrhea. Thank you all for your helpful information. It was quite a scary period of time.
  • Pam M
    Pam M Member Posts: 2,196
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    Thank you
    Doc found a bacterial infection and my husband began treatment for it yesterday and there is already sloop much improvement. They decided to hold off on his chemo treatment this week because his body was so deployed from 11 days of diarrhea. Thank you all for your helpful information. It was quite a scary period of time.

    Glad Things are Looking Up
    I (gratefully) did not have diarrhea to the extent your hubby and some others have. Glad he's improving. I do know how he feels on the mouth sores, though. Argh. After chemo round two, when I got hospitalized, docs gave me viscous lidocaine - rays of light shone down, and I heard singing - then I ate some soft food.
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Pam M said:

    Glad Things are Looking Up
    I (gratefully) did not have diarrhea to the extent your hubby and some others have. Glad he's improving. I do know how he feels on the mouth sores, though. Argh. After chemo round two, when I got hospitalized, docs gave me viscous lidocaine - rays of light shone down, and I heard singing - then I ate some soft food.

    Hi robin

    I am glad they got it before it got too bad, sometime bacterial infection can go un-notice until it does a lot of damage like in my case.

    All the best
    Hondo
  • robinleigh
    robinleigh Member Posts: 297
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    Hondo said:

    Hi robin

    I am glad they got it before it got too bad, sometime bacterial infection can go un-notice until it does a lot of damage like in my case.

    All the best
    Hondo

    Clostridium
    Wanted to let everyone know that the bacterial infection was clostridium dificile and we are treating it with vancomycin. Andy is already feeling sooo much better. I also read that it is caused by being on lots of antibiotics so wanted topass that on to any of you that may run into this problem. Also, acidophilus and case found in yoghurt and kefir help keep the good bacteria healthy in the colon.
  • DrMary
    DrMary Member Posts: 531 Member
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    Clostridium
    Wanted to let everyone know that the bacterial infection was clostridium dificile and we are treating it with vancomycin. Andy is already feeling sooo much better. I also read that it is caused by being on lots of antibiotics so wanted topass that on to any of you that may run into this problem. Also, acidophilus and case found in yoghurt and kefir help keep the good bacteria healthy in the colon.

    Homer called that one!
    I'm glad that it's responding to treatment. Homer, I'm sorry you got to be an expert on the topic, but thank you for your very informative post. Did your doctors (either Andy's or Connie's) offer opinions as to why the chemo caused the infection?
  • robinleigh
    robinleigh Member Posts: 297
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    DrMary said:

    Homer called that one!
    I'm glad that it's responding to treatment. Homer, I'm sorry you got to be an expert on the topic, but thank you for your very informative post. Did your doctors (either Andy's or Connie's) offer opinions as to why the chemo caused the infection?

    cause of infection
    From what I understand, the bacterial infection was not caused by the chemo. Andy was put on antibiotics for quite a long time and evidently the antibiotics kill off your good intestinal bacteria. He was put on antibiotics because one of the drugs in his chemo cocktail is erbitux and it causes acne (the erbitux rash). They prescribe antibiotics just like they would for teenage acne to keep it under control. Well, needless to say, he's off of those antibiotics because we'd prefer a healthy intestine over blemish-free skin!
    I am thankful that Andy's was caught before he ended up hospitalized. Another bump in the road.
    Hope this information can help someone else avoid this infection. It was quite horrendous and he was so ill that he thought it was the beginning of the end.
    You guys are so kind here and I appreciate the responses!
    Robin
  • connieprice1
    connieprice1 Member Posts: 300 Member
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    DrMary said:

    Homer called that one!
    I'm glad that it's responding to treatment. Homer, I'm sorry you got to be an expert on the topic, but thank you for your very informative post. Did your doctors (either Andy's or Connie's) offer opinions as to why the chemo caused the infection?

    Robin & Dr. Mary, I am sorry
    Robin & Dr. Mary, I am sorry if I was wrong on the chemo causing the bacterial infection. No one really ever explained it as clear as Robin did as to what was the actual cause. It makes perfect sense though because Connie did Cetuximab which is Erbitux, maybe that's why Connie's chemo doctor said the chemo did not cause the C.diff. I was giving Connie so much medication I didn't know she was taking antibiotics. Either way I am happy to hear that Andy is doing the Vancomycin and is getting better. I just always try to help anyone on this site, I don't know what we would have done without all the help and advice we received here. Like I always say "Their's no place like this place" God Bless Everyone Here, Homer & Connie
  • robinleigh
    robinleigh Member Posts: 297
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    Robin & Dr. Mary, I am sorry
    Robin & Dr. Mary, I am sorry if I was wrong on the chemo causing the bacterial infection. No one really ever explained it as clear as Robin did as to what was the actual cause. It makes perfect sense though because Connie did Cetuximab which is Erbitux, maybe that's why Connie's chemo doctor said the chemo did not cause the C.diff. I was giving Connie so much medication I didn't know she was taking antibiotics. Either way I am happy to hear that Andy is doing the Vancomycin and is getting better. I just always try to help anyone on this site, I don't know what we would have done without all the help and advice we received here. Like I always say "Their's no place like this place" God Bless Everyone Here, Homer & Connie

    good bacteria
    Just in case anyone has this clostridium difficile in the future...
    DanActive makes an immune system probiotic drink that contains lactobacillus casei, yoghurt has lactobacillus acidopholus, and kefir has all sorts of good bacteria so we have added it to our daily smoothie concoction.
    I hope none of you even need this information! But just in case...
  • Greend
    Greend Member Posts: 678
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    Montgomery
    Are you using the Montgomery Cancer Center by chance? That's where I was treated.

    Prattville

    Denny
  • robinleigh
    robinleigh Member Posts: 297
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    Greend said:

    Montgomery
    Are you using the Montgomery Cancer Center by chance? That's where I was treated.

    Prattville

    Denny

    what a small world
    Yes, we are at The Montgomery Cancer Center. Earlier today, I looked at the map "Where in the World are You?" which I had never looked at before and saw that there was another member here in Montgomery.
    My husband, Andy, had his original treatment at Mayo Clinic in Rochester. We are now in Montgomery because of metastasis. New ballgame for us now.
    Glad to be in touch!
    Robinleigh
  • robinleigh
    robinleigh Member Posts: 297
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    Greend said:

    Montgomery
    Are you using the Montgomery Cancer Center by chance? That's where I was treated.

    Prattville

    Denny

    what a small world
    Yes, we are at The Montgomery Cancer Center. Earlier today, I looked at the map "Where in the World are You?" which I had never looked at before and saw that there was another member here in Montgomery.
    My husband, Andy, had his original treatment at Mayo Clinic in Rochester. We are now in Montgomery because of metastasis. New ballgame for us now.
    Glad to be in touch!
    Robinleigh
  • robinleigh
    robinleigh Member Posts: 297
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    Greend said:

    Montgomery
    Are you using the Montgomery Cancer Center by chance? That's where I was treated.

    Prattville

    Denny

    what a small world
    Yes, we are at The Montgomery Cancer Center. Earlier today, I looked at the map "Where in the World are You?" which I had never looked at before and saw that there was another member here in Montgomery.
    My husband, Andy, had his original treatment at Mayo Clinic in Rochester. We are now in Montgomery because of metastasis. New ballgame for us now.
    Glad to be in touch!
    Robinleigh