Need some help...

spector551
spector551 Member Posts: 109
edited December 2013 in Head and Neck Cancer #1

I am in my 6th week of a 7 week treatment. I have hit a wall with eating and I am now starving. I am basically on a liquid diet, which is fine. The problem is that Boost, Resource, Ensure, etc make me sick when I drink them. My body doesn't like them at all. I was doing really well with Carnation Instant Breakfast Essentials and high protein/calorie smoothies, but then my body stopped accepting them as well. Everytime I drink one my guts rumble and shake and I get horrid acid indigestion that cannot be touched by the Protonix acid pills the doctor gave me. Makes me want to puke everytime I "eat" anything. It's not that I don't feel like eating, I want to eat really bad... 

 

Did any of you deal with this?

I had small success yesterday by getting a fruit smoothie that had no powdery stuff in it, and it stayed down fine. The problem is that you have to get a huge one to get only 500-ish calories. Had a hard time getting it all down.

 

God bless,

Jamie

Comments

  • donfoo
    donfoo Member Posts: 1,771 Member
    may sound crazy

    Jamie,

    Something you said triggered this thought. "Acid indigestion" - One of my mini research projects is evaluating the efficacy of high alkaline liquids to minimize dental disease over the long haul. Maybe grab a bottle of Essentia or other high pH water and use that to mix with some protein powder. I'd dilute it a lot at first just to see if it helps. Not much to lose by trying. Hope you feel better, Don

  • hwt
    hwt Member Posts: 2,328 Member
    donfoo said:

    may sound crazy

    Jamie,

    Something you said triggered this thought. "Acid indigestion" - One of my mini research projects is evaluating the efficacy of high alkaline liquids to minimize dental disease over the long haul. Maybe grab a bottle of Essentia or other high pH water and use that to mix with some protein powder. I'd dilute it a lot at first just to see if it helps. Not much to lose by trying. Hope you feel better, Don

    Jamie

    It won't get you all of the nutrients that you need, but, have you tried a good old fashioned milkshake? 

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Jamie

    I have the same problem, what I do is to mix it with water or milk 50/50, and then I can hold it without getting sick. The smoothie thing is a good idea if you can get it down. It might not have a lot of calories but a good fruit smoothie has everything else your body needs. Fruits and Nuts are the foods God gave to man in the beginning before he started eating meat.

     

    God be you my friend

    Hondo

  • donfoo
    donfoo Member Posts: 1,771 Member
    hwt said:

    Jamie

    It won't get you all of the nutrients that you need, but, have you tried a good old fashioned milkshake? 

    sure it can

    It won't get you all of the nutrients that you need

    Not sure if you were referencing the suggestion of protein powders. I use this term somewhat loosely. There are many many variations of these powders and there certainly are those that include most if not all vitamins and minerals to offer a rounded diet. They are not scientifically designed for this purpose so they are fine for shorter periods of time.

    The other thing about the canned sugar meals is they use lots of simple sugars and that is a huge load of sugar going into the gut at one time. Here is the contents http://ensure.com/products/ensure-nutrition-shake.

    What is upsetting your stomach? Try to see what does not upset your stomach. Test water alone, milk alone, mix them, dilute to varing degrees. If you find something works, then start mixing in the powders to see which variations are comfortable.

    Swing by the health store to get the whey protein powder and a complex carb like maltodrextine.

    Another suggestion is blending in a few herbs and spices.  It has been scientifically proven certain herbs and spcies improve digestion - NIH study  , NIH study.

    For example, ginger works. There are many common spices that improve digestion. Search on spice digestives, you will get plenty of ideas.

     

    Good luck, Don

     

  • Steve5
    Steve5 Member Posts: 147
    donfoo said:

    sure it can

    It won't get you all of the nutrients that you need

    Not sure if you were referencing the suggestion of protein powders. I use this term somewhat loosely. There are many many variations of these powders and there certainly are those that include most if not all vitamins and minerals to offer a rounded diet. They are not scientifically designed for this purpose so they are fine for shorter periods of time.

    The other thing about the canned sugar meals is they use lots of simple sugars and that is a huge load of sugar going into the gut at one time. Here is the contents http://ensure.com/products/ensure-nutrition-shake.

    What is upsetting your stomach? Try to see what does not upset your stomach. Test water alone, milk alone, mix them, dilute to varing degrees. If you find something works, then start mixing in the powders to see which variations are comfortable.

    Swing by the health store to get the whey protein powder and a complex carb like maltodrextine.

    Another suggestion is blending in a few herbs and spices.  It has been scientifically proven certain herbs and spcies improve digestion - NIH study  , NIH study.

    For example, ginger works. There are many common spices that improve digestion. Search on spice digestives, you will get plenty of ideas.

     

    Good luck, Don

     

    Ginger

    I agree with Don, ginger has really been helpful in the past when dealing with stomach issues in our household, just get a piece and suck on it that might help - you know I am comng behind you on the road so all I can say is you can do it and hang in there - just one more week brother - also, what about trying very small intake of liquid over long periods - sort of the normal move to 5-6 small meals a day versus the traditional 3, maybe it is volume and could you handle much smaller amounts - sorry can't help more

    Steve

  • meaganb
    meaganb Member Posts: 244 Member
    You could also try bolthouse

    You could also try bolthouse smoothies. They are premade &  usually found in the produce section. They are still not a yreat long term solution b/c they are high in sugar but the sugar comes from fruit & they make several that are high protein. A 16oz bottle generally has b/t 400-500 calories. I drank 3-4 a day when I was in treatment.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    jamie, i don't have a

    jamie, i don't have a suggestion but wanted to say CONGRATS on week 6!!  one more week and you can ring the bell plus it should get better for you a couple weeks after you finish.  i like the milkshake idea.  it should have a good taste and hopefully you can keep it down.  i couldn't keep the jevity down when i had my tube.  was able to hold the boost down tho.  good luck and I'll be praying for relief for you and that you find a good solution to the eating problem.

    God bless you,

    dj

  • PJ47
    PJ47 Member Posts: 376
    So sorry you are starving

    I am too due to 2 feeding tube surgeries, no appetite, stomach unable to tolerate much food.  I have been able to swallow however so I eat cream of wheat (runny) for breakfast and a high cal. smoothiie with whey protein (too many ingredients to list), and a can of soup (Progresso usually split pea, lentil which I puree in the blender, or chicken and dumplins with kashi crackers broken up in the soup soggy so I can swallow them.

     I tried adding Boost VHC (530 cal) which tasted like an oil slick to me and I cannot stand the taste, but don't know if you can tolerate it via tube it would have to be watered down.   I can tolerate chocolate muscle milk orally which is 340 cal.  and can be found at Walmart or Costco but it makes me have more mouth mucous.

     I just found a supplement I really like but it is not high in calories.  It is called Svelte cappachino and I ordered a case from Amazon.  It is organic soy, natural ingredients not lots of sugar, does not taste like an oil slick and I drink one after each meal which only adds about 600 more cal. per day for me, but It tastes fairly good and it is made with better ingredients than most supplements.  No high fructose dyes, etc.

    Don't know if any of this helps.

    Also, ask your MD about Reglan which is supposed to help with digestive tube problems.

    PJ

  • spector551
    spector551 Member Posts: 109
    Thanks

    Thanks for all the suggestions, guys. I think some of you thought I had been given a feeding tube because I said I was on a liquid diet... but that isn't accurate. I still ingest it all orally, just can't keep it down.

    Don, I'm going to try a couple of your suggestions. I already know that my body isn't very fond of cow's milk and I guess it is amplified by this emptyness in my stomach lol. My wife did pick me up some goat's milk today that I'm going to try to mix with the CIBE. I have tried goat's milk in the past with success.

    My wife made me some homemade egg drop soup today which I was able to hold down. Thought I was going to lose it there for a while, but kept it down. 

    God has been good to me in many areas of this treatment, so I am trying to remain always thankful - even though I don't feel well now.

    I'm also going to try the suggestion about the store bought smoothies. Probably cheaper than going to Smoothie King everyday lol.

     

    God bless,

    Jamie

     

    P.S. Steve, the thought of putting ginger in my mouth right now is horrifying lol!

     

  • PJ47
    PJ47 Member Posts: 376

    Thanks

    Thanks for all the suggestions, guys. I think some of you thought I had been given a feeding tube because I said I was on a liquid diet... but that isn't accurate. I still ingest it all orally, just can't keep it down.

    Don, I'm going to try a couple of your suggestions. I already know that my body isn't very fond of cow's milk and I guess it is amplified by this emptyness in my stomach lol. My wife did pick me up some goat's milk today that I'm going to try to mix with the CIBE. I have tried goat's milk in the past with success.

    My wife made me some homemade egg drop soup today which I was able to hold down. Thought I was going to lose it there for a while, but kept it down. 

    God has been good to me in many areas of this treatment, so I am trying to remain always thankful - even though I don't feel well now.

    I'm also going to try the suggestion about the store bought smoothies. Probably cheaper than going to Smoothie King everyday lol.

     

    God bless,

    Jamie

     

    P.S. Steve, the thought of putting ginger in my mouth right now is horrifying lol!

     

    you may want to try an anti-emetic before eating

    Have you tried an anti-nausea pill or suppository before a meal?  Just a thought.  I do not do well with cows milk either so I make smoothies with almond or rice milk.  I really like the svelte supplement I found recently and it is organic soy. Guess it will be trial and error for awhile for you, but keep on trying. 

    Yes I have the damn tube also but can still eat and it only makes me feel full not sick so I am lucky compared to you.  Have you had the tube checked out?  It could be the placement of it or something wierd.  I do take probiotics and do not know if that helped keep me from having more issues with digestion.  Hang in there and I agree the idea of ginger in the mouth is scary, but to add a small amount to a smoothie may be a good idea for the nausea and digestion issue.

    PS I am in my 6th week also of radiation.

    Take care,

    PJ

  • TinysMom67
    TinysMom67 Member Posts: 2

    Thanks

    Thanks for all the suggestions, guys. I think some of you thought I had been given a feeding tube because I said I was on a liquid diet... but that isn't accurate. I still ingest it all orally, just can't keep it down.

    Don, I'm going to try a couple of your suggestions. I already know that my body isn't very fond of cow's milk and I guess it is amplified by this emptyness in my stomach lol. My wife did pick me up some goat's milk today that I'm going to try to mix with the CIBE. I have tried goat's milk in the past with success.

    My wife made me some homemade egg drop soup today which I was able to hold down. Thought I was going to lose it there for a while, but kept it down. 

    God has been good to me in many areas of this treatment, so I am trying to remain always thankful - even though I don't feel well now.

    I'm also going to try the suggestion about the store bought smoothies. Probably cheaper than going to Smoothie King everyday lol.

     

    God bless,

    Jamie

     

    P.S. Steve, the thought of putting ginger in my mouth right now is horrifying lol!

     

    Eating

     Have you tried jello.  Until my constant drooling mucous scabs stopped I was also puking up my food often.  I came so close to having to get a feeding

    tube.  I had dropped down to 104 pounds. look like a cadaver.  I was done with radiation and at home trying to eat and gain weight.  Family doctor threatened

    to force a feeding tube on me.  We started ordering Carnation Boost 560. But I can only stomach it mixed with milk and ice cream.  Like a float.  But I could

    not drink that stuff until my throat healed up.  and that was at least a month after my treatments.  I ate cream of wheat, luke warm broth, super soft boiled eggs

    jello and drank a lot of sobe drinks.  I never did use a g tube.  But it took me longer to gain weight back than my friend with a feeding tube. But I never

    had to transition from tube to eating.  I always ate, even if not a lot.  And I really think not accepting the feeding tube gave me less adheshions and

    I did not have to have esophagus dilation as some did.  Your stomach has shrunk. Try mini meals  Frequently.  Until your throat heals it will be tough

    to get a lot of food down.  I still remember the day I could eat a BLT.  It was like heaven.   That was probably at five or six months after healing.

  • donfoo
    donfoo Member Posts: 1,771 Member

    Thanks

    Thanks for all the suggestions, guys. I think some of you thought I had been given a feeding tube because I said I was on a liquid diet... but that isn't accurate. I still ingest it all orally, just can't keep it down.

    Don, I'm going to try a couple of your suggestions. I already know that my body isn't very fond of cow's milk and I guess it is amplified by this emptyness in my stomach lol. My wife did pick me up some goat's milk today that I'm going to try to mix with the CIBE. I have tried goat's milk in the past with success.

    My wife made me some homemade egg drop soup today which I was able to hold down. Thought I was going to lose it there for a while, but kept it down. 

    God has been good to me in many areas of this treatment, so I am trying to remain always thankful - even though I don't feel well now.

    I'm also going to try the suggestion about the store bought smoothies. Probably cheaper than going to Smoothie King everyday lol.

     

    God bless,

    Jamie

     

    P.S. Steve, the thought of putting ginger in my mouth right now is horrifying lol!

     

    down the throat

    Jamie, Right. I sort of forgot where you were intaking nutrition. It is great when members list their details in their profile. One of the other lists the short profile at the end of each post. Very nice as it makes comment more relevant.

    Anyway, I did not have the pleasure of the PEG experience but what worked well when it got hard to chew and swallow was to grind up solid foods using a cheap baby food grinder. It does a wonderful job of mashing all solids into a paste that goes down pretty smoothly. It seems I'm the only one or one of very few who did this. I found one at Walmart for under ten bucks. Not quite as nice as a Vitamix but 500 dollars cheaper. :-)

    Personally, I'm like Steve and love the taste of ginger but with the grinder you can grind up a few slices right into the other foods and it would go down easier.

    As your wife is Asian, maybe she has some ties to the ancient herbal treatments. Not sure where you live but here in the Bay Area there are plenty of traditional and new-age herbal shops.  You can bet they have plenty of things to solve your specific ailment. Maybe she can call her grandma and get the scoop and experience and wisdom you need.

    Hang in there. Everyone has their own unique path and just needs to constantly refinng where the smoothest part of the path is for you.

    Don