Need To Vent- add yours too!

pluckey
pluckey Member Posts: 484 Member
edited March 2014 in Colorectal Cancer #1
My main struggle, besides my constant painful constipation after my ileostomy reversal last month, is FOOD. I've lost 40 lbs since diagnosed. I know I look like a refugee. I KNOW I have to eat, but I am SICK of everyone telling me I have to eat- "that's your job", "do what ya gotta do", " don't you want to live?" etc..

having mouth sores and absolutley NO sense of taste is horrible. I resent that I no longer enjoy food. I resent the hell out of it. To have anything that goes in my mouth feel like sand and pebbles is not a motivator to eat.

I'm not a big fruit eater, and now most fruits are too acidic and burn my tongue. I doubt I could gag down Juicing anyway.

OK, vent over, your turn!

Peggy

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #2
    Magic Mouth Wash
    You should as your oncologist for some magic mouth wash. It is supposed to help with the sores and you shouldn't be living like that and in so much pain. I know that chemo can do many things to taste, including destroying taste buds, making things taste like metal, or just having food in your mouth not feel right. I didn't like it either when people told me to eat. They say "just eat." Well unless you have been there, you don't know what it's like. I'm sorry you are having this trouble, but try the magic mouth wash and see if this helps some. Good luck.

    Kim
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    Milk Shakes....especially Peanut Butter kind....
    Just prior to bed and you will gain if you want to. Gaining weight is a matter of choice, losing weight is all together another matter. Im 20# over and loving it. I have something to sit my plate on and rest my arms on.I am alive and life is great. If you feel good and food tastes horrible or simply no taste at all, just be sure that you stay hydrated, that is most important and that will keep you out of the hospital until you regain weight if you want to. Most people are sincere to tell you to eat but they have not gone through what we go through so simply tell them to try and take sandpaper and sand on their tongues all day then take matches and blow them out and quickly stick them to the inside of their mouths , then see how much they wanna eat after that. You are in control of your intake so don't be to hard on em...LOL...Chili is and was a Godsend to me.......{{{hugs}}}, Clift....BTW, kickin a plastic trashcan does wonders for rehab...... :)
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #4
    Good Vent!!
    It's good to vent.. I love it!! Keep up that fight.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    Appetite stimulator
    Ever think of trying pot for increasing your appetite? It works wonders and helps fight nausea. Makes food taste REAL good too.
  • Patteee
    Patteee Member Posts: 945
    #6
    Peggy-
    I know what you are
    Peggy-
    I know what you are going through. I had mouth sores and thrush so bad that my mouth was swollen shut. I was hospitalized for a week that time- on some IV drug to counter it. I know exactly how your mouth feels- egg would stick to the side of my cheek, I had to peel it off the inside of my mouth. Everything, absolutely everything tasted like crap. The only things that would even help. Magic mouthwash and a lydocain/morphine mouth wash. Both would coat or numb the inside of my mouth so I could then eat something. Was usually always soup, or ensure (warmed up with cinnamon on the top)- one time I managed chips, cheese and salsa- I generally would have about a 10-15 min window when I could eat after the mouth numbing. I wouldn't eat much and still the taste wasn't exactly good, but I was able to get calories in me.
  • Patteee
    Patteee Member Posts: 945
    #7
    PhillieG said:

    Appetite stimulator
    Ever think of trying pot for increasing your appetite? It works wonders and helps fight nausea. Makes food taste REAL good too.

    ya know, I never really had
    ya know, I never really had an issue with my appetite- I craved food, really really obcessedd with food. But when your mouth is swollen shut due to thrush and mouth sores, no amount of pot can take care of that. It just doesn't take away the horrid taste in your mouth!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #8
    Patteee said:

    ya know, I never really had
    ya know, I never really had an issue with my appetite- I craved food, really really obcessedd with food. But when your mouth is swollen shut due to thrush and mouth sores, no amount of pot can take care of that. It just doesn't take away the horrid taste in your mouth!

    Trial and Error
    Everyone is different, just as you had no issue with loss of appetite, others do have this problem. I'm just offering suggestions as to what helped me. In my case it did take away much of the horrid taste.
    -p
  • Patteee
    Patteee Member Posts: 945
    #9
    PhillieG said:

    Trial and Error
    Everyone is different, just as you had no issue with loss of appetite, others do have this problem. I'm just offering suggestions as to what helped me. In my case it did take away much of the horrid taste.
    -p

    Pot actually helped me relax
    Pot actually helped me relax and sleep- and wish it would have helped with the mouth. And you are correct with others having the lost of appetite and pot can help that. I just wish it would have changed the inside of my mouth. It literally felt like chewing on sandpaper, that would stick to my gums and the inside of my cheeks. Or tryping to swallow a handful of rocks. I am glad it helped you and yes, I agree that others may benefit from it. :)
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #10
    PhillieG said:

    Trial and Error
    Everyone is different, just as you had no issue with loss of appetite, others do have this problem. I'm just offering suggestions as to what helped me. In my case it did take away much of the horrid taste.
    -p

    and yes Phil.for those that want to eat....
    When I was young growing up I did smoke some of it and once upon a time I ate a whole frozen poundcake that was a year old...It was the best thing I have ever eaten in my life..LOL....Rock On Bud
  • DennisR
    DennisR Member Posts: 148
    #11
    Patteee said:

    Peggy-
    I know what you are
    Peggy-
    I know what you are going through. I had mouth sores and thrush so bad that my mouth was swollen shut. I was hospitalized for a week that time- on some IV drug to counter it. I know exactly how your mouth feels- egg would stick to the side of my cheek, I had to peel it off the inside of my mouth. Everything, absolutely everything tasted like crap. The only things that would even help. Magic mouthwash and a lydocain/morphine mouth wash. Both would coat or numb the inside of my mouth so I could then eat something. Was usually always soup, or ensure (warmed up with cinnamon on the top)- one time I managed chips, cheese and salsa- I generally would have about a 10-15 min window when I could eat after the mouth numbing. I wouldn't eat much and still the taste wasn't exactly good, but I was able to get calories in me.

    I've had that problem every
    I've had that problem every time I had the Chemo, the absolute worst was when I did the Bone Marrow/Stem Cell transplant and was neupogenic, (NO WBCs at all), my mouth was a disaster area. The Magic mouth wash was a godsend and allowed me to eat enough to stay nourished. I was doing most of the cooking when we got home because my wife had to work. Now THAT was a challenge, because I would spend the day conjuring up what I thought would be the Perfect meals and then prepared them. My wife didn't always agree that my choices were so Perfect, but I could at least eat them, more or less. Pot is out of the question, the VA just doesn't seem to have the M word in their vocabulary and would probably refuse further treatments if I used it. I have several friends (Doctors) who have actually given me legal prescriptions for it, but I've never used Pot, and I guess I have a mental aversion to using it.
    Several dear friends have brought me some as well, and I always take it and thank them profusely, then tell them how much better it made me feel, but I don't actually smoke it. Dumb,eh? Old dogs and new tricks syndrome, I suspect.
    DennisR
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #12
    DennisR said:

    I've had that problem every
    I've had that problem every time I had the Chemo, the absolute worst was when I did the Bone Marrow/Stem Cell transplant and was neupogenic, (NO WBCs at all), my mouth was a disaster area. The Magic mouth wash was a godsend and allowed me to eat enough to stay nourished. I was doing most of the cooking when we got home because my wife had to work. Now THAT was a challenge, because I would spend the day conjuring up what I thought would be the Perfect meals and then prepared them. My wife didn't always agree that my choices were so Perfect, but I could at least eat them, more or less. Pot is out of the question, the VA just doesn't seem to have the M word in their vocabulary and would probably refuse further treatments if I used it. I have several friends (Doctors) who have actually given me legal prescriptions for it, but I've never used Pot, and I guess I have a mental aversion to using it.
    Several dear friends have brought me some as well, and I always take it and thank them profusely, then tell them how much better it made me feel, but I don't actually smoke it. Dumb,eh? Old dogs and new tricks syndrome, I suspect.
    DennisR

    Stigma?
    There seems to be this stigma associated with pot, maybe from the Reefer Madness movie, that it is going to make people crazy or go on to "harder drugs". I don't think drugs get much harder than chemo drugs. Pot is something that has been around since day one (or maybe two) and has been used for centuries as medicine. I guess since it's not FDA approved people feel it's bad for them.
    To each their own. Good luck
    -p
  • pluckey
    pluckey Member Posts: 484 Member
    #13
    Pot
    I wouldn't have a problem smoking Pot if it would actually make food tast good! I don't have as bad of mouth sores like Pattee(you poor thing, you had it baaad). But as someone who quit smoking the day of her diagnosis, I'd feel wierd "smoking" again!

    I may end up giving it a try!
  • Shayenne
    Shayenne Member Posts: 2,342
    #14
    pluckey said:

    Pot
    I wouldn't have a problem smoking Pot if it would actually make food tast good! I don't have as bad of mouth sores like Pattee(you poor thing, you had it baaad). But as someone who quit smoking the day of her diagnosis, I'd feel wierd "smoking" again!

    I may end up giving it a try!

    I....
    ...never smoked back when I was in school, it only made me sick, I started using it when I had some bad nausea (thanks for the suggestions about it here) and it really helped me with it, just 2 lil hits, and that's all it took! worked better then the pills. I'm able to get it through friends, but haven't done it in awhile, I may need to do it this weekend for my 12th, since I hope it doesn't knock my butt out!

    When I started to get a couple of mouth sores, my onc totally took the leucovorin out of my regimen, and continued with just the Avastin and Irinotecin, and 5FU, which was like 5 treatments ago, and I haven't had a mouth sore since, but I have also tried the magic mouthwash when I did have it, and it worked wonderfully, also with the biotene toothpaste and mouthwash too, and they went away within a couple days. Maybe that will help? I hope you feel better though!

    Hugsss!
    ~Donna

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