Feeding tube vs. eating

artheri
artheri Member Posts: 14
edited April 2012 in Head and Neck Cancer #1
Hi,

Long time lurker, reading about others going through the same thing as me has helped a lot. Thanks everyone :)

I've got a few questions about eating and the feeding tube, but first a little info about my current eating situation:

Most or all posts I read about feeding tubes here, people have the PEG tube. I'm not familiar with it at all except that I know it's located @ the stomach. I've got a tube down my nose to the stomach instead. I used it for nutrition post-op for around 10-15 days, and it was removed as I was able to eat normally after that. I had to wait approximately a month to heal before I started 7 weeks of chemo and radiation, and ate anything I wanted until late into the treatment. week 5 to 6 I started losing too much weight because I wasn't able to eat enough (things tasted bad and it hurt to the point where I had tears popping out while eating), so I asked them to put the tube back in, and I've been using it 100% for nutrition after that. I'm now almost 4 weeks out from treatment (it ended 16th of March), and still using it exclusively. I do drink water normally as I feel it helps with my dry mouth. I get quite a decent amount of saliva, but it's pretty thick so it doesn't spread around the mouth as well as it should (my front half of the mouth keeps getting dry), and I have to spit quite a lot to keep it in check (or swallow it, but that feels kinda nasty after a while). Anyways, I don't drink a big big amount of water, but take some sips/chugs now and then throughout the day which helps a lot. Now and then I try to eat solid food, but even very small chunks kinda sticks to my mouth and it's difficult to swallow it as it doesn't get much lubrication and it's hard to get it located to the back of my throat. Also, my tongue is quite sore still and less mobile than it was before radiation, so that affects it a bit too. I do move and flex my tongue around often to try "soften" it up.

Question 1: Is anyone familiar with the nose to stomach tube, and can I use this for months and months without any danger/problems? Seems like the PEG tube is the tube of choice for long-term tubes. Is it only because it's located "out of sight"?

Question 2: It seems like everyone gets adviced to try eating as soon as possible. I'm thinking this is to make sure that the swallowing function doesn't deteriorate? As I'm drinking water very often throughout the day, do I still need to force myself to try eating solid food, or can I take my time like I've done up until now, just trying once in a while to see if it's gotten better?

And...

Question 3: The fact that my taste buds are shot to pieces also doesn't really encourage me to eat, and my sore tongue doesn't help either. Is it important to eat different types of tastes to challenge my taste buds/force them to come out of hiding faster? I try to test different types of food/tastes whenever I do test my ability to east solid food. Today I tried a citrus-tasting pastille (not really food, but I was wondering if I could taste citrus) and it was my first taste of something for over a month. I could taste the citrus, although only at 40-50% of the intensity I had before. I also had some vanilla ice cream today where I also could taste the vanilla, although only at like 5-10% of the intensity it should be (big big moment though, I'm really happy to have some semblance of taste coming back!). It leads me to believe that they'll come back in their own time, as I haven't had anything tasting citrus or vanilla in my mouth since I started using the tube again. Even the ice cream was a bit of a hassle to eat though, and I had to spit out the pastille as the sores on my tongue did not like the acidic nature of the citrus.

Question 4: I've got a speech therapist that's given me some activities to stimulate the 3 different groups of swallowing muscles. Is anyone familiar with such activities, and do they help? I've been slacking A LOT, to the point where I'm not doing any at all anymore. I did a little of them to begin with, but they feel so "small and silly", I don't really think they'll help much. If someone that's been through something similar could tell me they do in fact help, that would inspire me to pick them up again, although I don't really feel I've got a problem with swallowing as I've got no problems chugging water. It feels like the swallowing problems I have with solid food is only related to the lack of proper saliva and sore/less mobile tongue.

Thanks for your time reading through all that. It became longer than intended :)

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    you are a tough dude
    The NG tube is an unpleasant way to accomplish what you're doing. The PEG is generally used because it is so much more comfortable. I guess I don't understaned something. If you can "chug" water, then you can "chug" ensure. I'm six weeks out from completion of my rads right now, and that's all I've done for nutrition. It has been very adequate: my weight is higher now than it was at the start of rads. I guess I don't understand why you don't just go on a liquid diet and forget about the NG tube. It doesn't sound from your post like you need it.

    There is nothing special about a solid diet. Swallowing boluses of liquids is effective at exercising the swallowing reflex. And yes, your therapy will help you maintain/recover your abilities. YOu are going to need copious amounts of liquids to assist in swallowing solids anyway, when you return to solid foods. Ensure or milk products are generally better at doing that than water, many of us find.

    If you have ANY taste left, your taste will eventually recover. That's just going to take time, and probably a lot of it. My first time through radation, it was about five years later I finally decided my sense of taste was completely normal, even though some taste returned very quickly after rads.

    Welcome to the forum. You're going to be ok.

    Pat
  • artheri
    artheri Member Posts: 14
    #3
    longtermsurvivor said:

    you are a tough dude
    The NG tube is an unpleasant way to accomplish what you're doing. The PEG is generally used because it is so much more comfortable. I guess I don't understaned something. If you can "chug" water, then you can "chug" ensure. I'm six weeks out from completion of my rads right now, and that's all I've done for nutrition. It has been very adequate: my weight is higher now than it was at the start of rads. I guess I don't understand why you don't just go on a liquid diet and forget about the NG tube. It doesn't sound from your post like you need it.

    There is nothing special about a solid diet. Swallowing boluses of liquids is effective at exercising the swallowing reflex. And yes, your therapy will help you maintain/recover your abilities. YOu are going to need copious amounts of liquids to assist in swallowing solids anyway, when you return to solid foods. Ensure or milk products are generally better at doing that than water, many of us find.

    If you have ANY taste left, your taste will eventually recover. That's just going to take time, and probably a lot of it. My first time through radation, it was about five years later I finally decided my sense of taste was completely normal, even though some taste returned very quickly after rads.

    Welcome to the forum. You're going to be ok.

    Pat

    Thanks for reply :)
    I don't really mind the tube at all, except that it's kind of a flag saying "I'm sick" when I'm out in public, which I couldn't care less about anyways :) I have no discomfort from it, so I've gotten very used to it being my way of nutrition. I must admit I haven't considered going back to the high nutrition drinks at all before you mentioned it now. My last week before getting the tube back in was on those drinks, and it was so much pain involved I guess I might have just suppressed the thought of going back to them completely. You're so right though, I should be able to drink them now. I'll grab a new supply from the drugstore today and see how it feels.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    artheri said:

    Thanks for reply :)
    I don't really mind the tube at all, except that it's kind of a flag saying "I'm sick" when I'm out in public, which I couldn't care less about anyways :) I have no discomfort from it, so I've gotten very used to it being my way of nutrition. I must admit I haven't considered going back to the high nutrition drinks at all before you mentioned it now. My last week before getting the tube back in was on those drinks, and it was so much pain involved I guess I might have just suppressed the thought of going back to them completely. You're so right though, I should be able to drink them now. I'll grab a new supply from the drugstore today and see how it feels.

    Here's what I've done
    I went on liquids with about 3 weeks of rads left. That's when my mouth ulcers presented, and it got too uncomfortable to chew. I started at 2100 calories per day. My weight started dropping, so I gradually increased calories. I also figured out how to add stuff to the ensure with my blender, and i've become pretty adept at that. I add yogurt, pudding, peaches, strawberries, ice cream (that hurt pretty badly for awhile, just too cold), peanut butter, in short anything that blended well.

    I also had to push calories up to about 3500, because toward the end of rads you become catabolic, and burn calories like a blast furnace. I admit this wasn't very pleasant for the first couple of weeks post rads. It hurt badly enough that I'd chug down each feeding standing over the kitchen sink so I could rinse with salt/soda sollution immediately afterwards, to cut the pain. Tears flowing down my face. But that didn't last for long.

    I'm just about to readd solid foods again. Just now getting off the pain pills, and although I am sure I won't be able to get all my calories through solids at first, it is a start. Six weeks after rads...

    My caloric requirements have now dropped back down to about 2100/day. So I'm back to three feedings per day. No tube for me. And the stuff I added to ensure was primarily because I could still taste some things a bit, and I certainly can still smell. It was nice to have a little variety in my "food".

    I had an NG tube for a few weeks back when I had my radical surgery. I was so happy to get it out. Again, you are a tough dude.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    PEGLESS in Florida....
    If you've read the threads you'll know I was one of those without a PEG.

    I had your concerns about keeping the throat muscles working, but I mainly only consumed water and Ensure Plus. I did however eat DelMonte Sliced Peaches sold in mason type jars...light syrup.

    I did that mainly because I could just faintly taste a little, but they slid down with minimal pain or effort.

    Welcome to the forum....

    Best,
    John
  • artheri
    artheri Member Posts: 14
    #6
    longtermsurvivor said:

    Here's what I've done
    I went on liquids with about 3 weeks of rads left. That's when my mouth ulcers presented, and it got too uncomfortable to chew. I started at 2100 calories per day. My weight started dropping, so I gradually increased calories. I also figured out how to add stuff to the ensure with my blender, and i've become pretty adept at that. I add yogurt, pudding, peaches, strawberries, ice cream (that hurt pretty badly for awhile, just too cold), peanut butter, in short anything that blended well.

    I also had to push calories up to about 3500, because toward the end of rads you become catabolic, and burn calories like a blast furnace. I admit this wasn't very pleasant for the first couple of weeks post rads. It hurt badly enough that I'd chug down each feeding standing over the kitchen sink so I could rinse with salt/soda sollution immediately afterwards, to cut the pain. Tears flowing down my face. But that didn't last for long.

    I'm just about to readd solid foods again. Just now getting off the pain pills, and although I am sure I won't be able to get all my calories through solids at first, it is a start. Six weeks after rads...

    My caloric requirements have now dropped back down to about 2100/day. So I'm back to three feedings per day. No tube for me. And the stuff I added to ensure was primarily because I could still taste some things a bit, and I certainly can still smell. It was nice to have a little variety in my "food".

    I had an NG tube for a few weeks back when I had my radical surgery. I was so happy to get it out. Again, you are a tough dude.

    Pat

    food and weight
    I can so relate to the "standing over the kitchen sink" thing. That last week before I got the tube put back in, I was standing at the sink chugging down the drinks as fast as possible, tears popping everywhere, then afterwards rinsing with water like I was on fire. It was really horrible. I'm also just about to get off the pain meds, Instead of taking them regularly, I'm now taking them when needed, which today has only been once (and I could have managed without it really).

    I've not counted calories at all through this, but I've made sure to feed a lot more regularly than I did before the cancer. I was diagnosed with mild Diabetes 2 after my operation, so I've had to do some changes. I was 198 lbs (5 foot 11 tall) at the day of my operation, and was down to 190 lbs when I got the tube removed. After that, I lost approximately 2.2 lbs every week (I'm pretty sure this was down to the changes I did to my diet because of the diabetes) and stabilized at 176 lbs. The last 2 weeks before I got the tube put back in I dropped a total of 17.5 lbs though, most of it that last week, and my energy which had been fine up until that point totally hit rock bottom. A few days with the tube and it was back, and I'm now up to 165 lbs and climbing.

    I went to the drugstore today. They didn't have the energy drinks that I've got prescription for in stock though, so I have to go back on Friday to pick them up. I'll probably keep the tube through the weekend to make sure I can sustain my nutrition needs orally. I don't want to remove it only to have to go get it put back in, it wasn't enjoyable getting it put in :P Mixing different types of food into the drinks sounds like a very good idea by the way, I'll put my blender to the test on that :).
  • artheri
    artheri Member Posts: 14
    #7
    Skiffin16 said:

    PEGLESS in Florida....
    If you've read the threads you'll know I was one of those without a PEG.

    I had your concerns about keeping the throat muscles working, but I mainly only consumed water and Ensure Plus. I did however eat DelMonte Sliced Peaches sold in mason type jars...light syrup.

    I did that mainly because I could just faintly taste a little, but they slid down with minimal pain or effort.

    Welcome to the forum....

    Best,
    John

    Thanks for the welcome and reply
    Canned fruit sounds like something I might be able to get down, they're like very soft and very watery :) Definitely picking up some at my next visit to the grocery story!
  • osmotar
    osmotar Member Posts: 1,006
    #8
    artheri said:

    Thanks for the welcome and reply
    Canned fruit sounds like something I might be able to get down, they're like very soft and very watery :) Definitely picking up some at my next visit to the grocery story!

    Pegless also
    Like John , I didn't have a PEG either..but I went into this with the mind set that I didn't want one. My rad doc said as long as I didn't lose more than 2 lbs a week he wouldn't consider the PEG. I have to admit I didn't have any mouth or swallowing issues, did lose my taste around week 3, but my food police sister & niece made sure I ate and drank what I should, whether I could taste or not. I also supplemented with boost, ensure and a whey protein drink. If your able to swallow try a soft diet soups , mashed potatoes , etc.

    Linda
  • artheri
    artheri Member Posts: 14
    #9
    osmotar said:

    Pegless also
    Like John , I didn't have a PEG either..but I went into this with the mind set that I didn't want one. My rad doc said as long as I didn't lose more than 2 lbs a week he wouldn't consider the PEG. I have to admit I didn't have any mouth or swallowing issues, did lose my taste around week 3, but my food police sister & niece made sure I ate and drank what I should, whether I could taste or not. I also supplemented with boost, ensure and a whey protein drink. If your able to swallow try a soft diet soups , mashed potatoes , etc.

    Linda

    tube
    Yeah, I too went into chemo and radiation treatment with my mind set on not getting the tube put in. It actually made me wait too long. In retrospect I should have gotten it at least a week earlier.

    I've not had problems with the swallowing itself, but my tongue and throat just hurt too much when eating/drinking, even with heavy pain medication. Even now, sores on my tongue gets really painful when for example drinking orange juice, so I'll have to stick with more neutral stuff for a while.
  • francma
    francma Member Posts: 69 Member
    #10
    artheri said:

    tube
    Yeah, I too went into chemo and radiation treatment with my mind set on not getting the tube put in. It actually made me wait too long. In retrospect I should have gotten it at least a week earlier.

    I've not had problems with the swallowing itself, but my tongue and throat just hurt too much when eating/drinking, even with heavy pain medication. Even now, sores on my tongue gets really painful when for example drinking orange juice, so I'll have to stick with more neutral stuff for a while.

    tube
    Today I just had the peg tube removed after 14 1/2 months!!! I had it put in a couple weeks prior to treatments. My doctor advised this because I would have not felt up to it during treatments. He was right..that was hard enough for me. It was a life saver for me. With all the excess mucous, sores, raw throat..it was very difficult for me to even drink water for awhile, nevertheless eat anything. For me, I think it was a retraining how to eat all over again. My taste buds were so altered that it took alot of patience and perseverance. Just had to retry different foods and drinks and still do. My appetite was poor, but I am finally pretty much back to normal. So the bottom line is, don't be hard on yourself. It will all come back. Never ever give up!

    My doctor highly recommended ensure and carnation breakfast drinks with or without peanut butter. Carnation's website has many recipes. I say you try anything that works. They want you to move your jaw also so chewing biotene or Spry sugarless gum from my dentist was of help, as I felt alittle tight. All good now! You will be too!!

    Fran~
  • aprilshower55
    aprilshower55 Member Posts: 31
    #11
    feeding tube vs eating
    for me feeding tube was the only way. with the side effects after starting rad,
    i was not able to drink or take my pain med. i would not have made it without the g-tube. i now have two belly buttons but i don't care. as far as eating take your time as long as you have your ensure and require calories each day. i am limited to my solid foods, i eat what i can hopefully in time i will be able to eat more.
    i have my taste buds, because of dry throat and mouth not able to eat food that are spiced and salty. good luck.
  • artheri
    artheri Member Posts: 14
    #12
    aprilshower55 said:

    feeding tube vs eating
    for me feeding tube was the only way. with the side effects after starting rad,
    i was not able to drink or take my pain med. i would not have made it without the g-tube. i now have two belly buttons but i don't care. as far as eating take your time as long as you have your ensure and require calories each day. i am limited to my solid foods, i eat what i can hopefully in time i will be able to eat more.
    i have my taste buds, because of dry throat and mouth not able to eat food that are spiced and salty. good luck.

    Yeah
    When I got late into my radiation treatment, I struggled so bad with eating, without the tube I'd be in a horrible or worse condition now.

    I picked up my energy drinks at the drugstore today and they go down just as easily as water, even with added ice cream to make them thick as the thickest milkshake. I'll pull out my tube during the weekend. I will probably procrastinate it a little though with the excuse that I want to be 100% sure that I don't have to get it put back in. It was quite unpleasant to get it taken out the first time :P It's only for a few seconds though, so I'll buck up and get at it sometime during the weekend for sure!

    My taste buds are for sure on their way back now too, I've got around 10-20% taste from the chocolate shakes, and a lot more from the strawberry shakes :D And the only real pain I've got now 4 weeks out of radiation treatment is on the left side of my tongue where it keeps rubbing against my teeth because of the swelling. Hope it goes down soon, so it can start to heal on that side. Might be sore on the right side too, but got no feeling there as it's reconstructed and I've got no nerves in it on that side.

    The first 2 weeks after radiation ended was really bad and it felt like it only got worse and worse and it never would get better. Now, I'm really surprised how much progress there's been in the last 2 weeks. I was used to noticing improvement pretty much day by day after the surgery, but after radiation I had to change my perspective to week by week or even longer instead it seems.
  • mls351w
    mls351w Member Posts: 90
    #13
    peg
    My doctor had mine "installed" before any treatment started. After a couple of weeks of rad, I used it because it was too painful to swallow. I had 2 weeks of 24hr chemo and 8 weeks of radiation. I had it pulled 2 weeks after treatment was finished. My biggest problem with the peg was trying to force the liquids in too fast. I was glad doc insisted on having it put in before treatment.
    Squamous cell carcinoma BOT. 59 years old. And 5 years 4 months out.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
    mls351w said:

    peg
    My doctor had mine "installed" before any treatment started. After a couple of weeks of rad, I used it because it was too painful to swallow. I had 2 weeks of 24hr chemo and 8 weeks of radiation. I had it pulled 2 weeks after treatment was finished. My biggest problem with the peg was trying to force the liquids in too fast. I was glad doc insisted on having it put in before treatment.
    Squamous cell carcinoma BOT. 59 years old. And 5 years 4 months out.

    I'm supposed to get my PEG put in day after
    tomorrow...both the Oncologist and the Rad-onc said they didn't want to do a wait and see, simply because once radiation gets going, that pulling a tube down my throat was going to be just short of torture. Plus, I don't have much room for weight loss.

    I have to say tho, after reading this thread I'm feeling very encouraged about taking up eating by mouth again after rads are over. I honestly don't care if food is tasteless...as long as I can swallow once it's over...that's the one thing that would scare me. I'm going to try and do what you did, John...do peaches for practice, when things get difficut.

    p
  • Rick2924
    Rick2924 Member Posts: 23
    #15
    Swallowing Exercises
    You may think those exercises are silly, but your swallowing muscles will atrophy. Swallowing solid foods uses the muscles differently than swallowing liquids. I too slacked off doing the exercises after my radiation. My swallowing function returned in 3 or 4 months and things were very manageable. Then 2 years later I had a recurrence and had to have a portion the base of my tongue and soft palet removed. I had the Trans Oral Robotic Surgery so my recovery time was better than having the open procedure, but my swallowing function was zero. I couldn't control any liquids or food in my mouth. Aspiration was hard to avoid so I relied on the nasogastric tube. My swallowing therapist convinced me to do the exercises she prescribed. I did them religiously and was able to get the tube out in 7 weeks. I'm six months out from the surgery and am able to handle soft foods without too much difficulty. I still do the exercises, in fact I use an iPhone app call iSwallow. I don't think I would have made this much progress without the exercises.

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