Input regarding Peg Tube

Hq18
Hq18 Member Posts: 24
in Head and Neck Cancer #1
I completed my radiation treatment back on 5/18/11 and hear I am over a month later still not able to really eat. I have been going to speech/swallow specialist once per week for three weeks now. She just released me to start being able to eat what I want. The problem I am having is that I find alot of things still burn on the throat or taste gritty. My saliva is still pretty thick. I really want to eat as I am craving food but can't because of how it feels and my patience is starting to run thin. I am starting to get really fustrated because I really want to eat and I want to get this Peg Tube removed because it's getting irritating. Any input from other's on some time frames when I might be able to swallow without it burning? Or when I can hope the taste buds start to come back? I can taste a hint of some foods but just a hint. Thanks for any input!

Comments

  • Fire34
    Fire34 Member Posts: 365
    #2
    Peg Tube
    I wouldn't get too frustrated yet, you are only a month out. I was three months out before I got mine removed. I had to have a constant weight gain between follow ups. And yes my ent swallow studies showed everything was ok to.
    My wife force fed me enough scrambled eggs etc and all kinds of soft stuff just to keep me swallowing.
    My taste buds have forever changed, I have my taste back but it is totally different than before treatment, and yes things still burn. Even my favorite salad dressing
    Dont forget that baking soda/salt water combo for the mucus/thick saliva it helped me also Hope this helps a little
    Wishes & Prayers on your recovery
    Dave
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #3
    Time range
    Hq,

    I can understand your desire to get back eating what you once did. Unfortunately, our bodies/face/neck take a beating from the Radiation we go through. Each of us recover at a different pace, age and health play a part of it, but what I was told is this. Even though you complete your radiation on a certain date, the radiation is accumlative and continues to work on us. We go thru the " Cooking " period for roughly 4-8 weeks after the final radiation treatment.

    With that said, you may still be in the " Cooking " stage for another week or two. My taste buds started to wake up roughly in week 5. I tasted milk first, Ketchup burned my throat for nearly a year. Trial and error will continue for some time when eating. What doesn't work one month will work another month. Please take it slow, as I had 4 choking episodes in my first year. The swelling in our neck takes some time to go down and the passageway is still a bit narrow. Start with soft foods and work your way up once again. Keep fluids at hand to wash down your foods, even if it is yogurt you are eating.

    My Best to You and Everyone Here
  • Pam M
    Pam M Member Posts: 2,196
    #4
    Welcome to Our BIG Club
    Hq,
    I got rid of my PEG last summer. Like you, a month out, I was not eating enough for my tube to be removed - it took me like three months BUT I was eating VERY WELL before the removal - I felt like I could have had it removed sooner (yet the doc with years of education and experience disagreed with me - hmmmm). I started out regaining taste the way I lost it - slowly at first, then quickly. Are you on pain meds? I took pain meds for a while to help me be able to eat - I had to plan eating, and take medicine over an hour before I wanted to eat, but the medicine helped. At two months, I'd say my taste was almost completely recovered. I think I may have been a little ahead of the curve on that one.

    The bad news is some foods will probably burn for quite some time. It took a while for me to be able to eat my beloved catsup again. Same for salad dressing and citrus fruits. Now, I can eat mild salsa and all fruits. A year a three months out, some foods still burn, but not enough to keep me from eating them. I still can't eat medium salsa (used to eat LOTS of it), but I'm OK with that. Some days, some salad dressings are a little harsh, too.

    I had to watch textures for a while. Smoothies were my friend part of the time - my goal was just to hit my calorie goals, and you can really load up calories in smoothies and/or nutrition drinks. So I would eat what "normal" food I could, and fill in caloric gaps with smoothies. I wouldn't do normal milkshakes for calories - milk adds to your phlegm issues.

    I think it sounds like you're "normal" here - I think the vast majority of us here were frustrated at our rate of recovery after treatment, even though we'd been told it was normal. Nothing like biting into something warm with substance, and gobbling it up.

    I still have a few eating issues, but they are very minor. I can eat well enough so that I have actually gained 25 pounds in the past year, and now find myself needing to eat LESS - what a welcome switch.

    Here's hoping your mouth and throat kick into recovery overdrive. The wait is irritating, though - I'll give you that.

    Oh - and on the phlegm - I've read that club soda helps break it down a lot. I didn't try that, because of what I called "carbonation burn", but several people recommended it. Several folks also recommend glutamine powder to help cut the burn. I made sure I drank lots of water, and also did netti pot nasal rinses.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    I agree with some of the other comments. At a month out, you're
    Barely done cooking or peaking. I'm not going to talk time frames with me, because mine were dire. Every one is so different. As far as the burn goes, I would really recommend the L-Glutamine powder. 1 heaping tsp in a glass of water. Swish and swallow. You can get it at a vitamin store like GNC. Right now, just bought more yesterday, they have a buy one get half off another. This can help with the burning and the mucositis. As far as that frustrating gritty feel that foods have, I know how that sucks. I didn't start to eat until 9months after because my mouth was so bad and everything even then, felt like sawdust, BBs and glass shards. Even mashed potatoes and scrambled eggs felt gritty on my tongue.

    Smoothies, cream soups, poached eggs, puréed vegetables, avocados, bananas and soft foods to start are best. I found giving my mouth less to chew and handle, the better. After I could struggle through those, I put everything in the mini chopper and made my soups and foods that consistency. Then after I could get through the mini food processor minced foods, I moved to using my knife skills, and did a 1/4 x 1/4 inch brunois dice. I can now just chop most veggies. Maybe an inch x an inch. I can cook my vegetables less also.

    I found that if I modified the way I cooked and prepared my foods, and listened to my mouth (and my stricture :-/ ) I had much better success, instead of trying to eat the 'normal' food that I used to eat. I have had to completely change my way of thinking, what I ate, and how I prepped and cooked my food. Despite my eating issues, I am eating better foods and have a better diet now, than I ever have in my life.

    I know you are impatient to eat again. Believe me!!!!! I know. It does require some patience tho. Wishing you normal eating quickly! In the meantime, take the baby steps, and then before you know it you will be at a walk- then run.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    sweetblood22 said:

    I agree with some of the other comments. At a month out, you're
    Barely done cooking or peaking. I'm not going to talk time frames with me, because mine were dire. Every one is so different. As far as the burn goes, I would really recommend the L-Glutamine powder. 1 heaping tsp in a glass of water. Swish and swallow. You can get it at a vitamin store like GNC. Right now, just bought more yesterday, they have a buy one get half off another. This can help with the burning and the mucositis. As far as that frustrating gritty feel that foods have, I know how that sucks. I didn't start to eat until 9months after because my mouth was so bad and everything even then, felt like sawdust, BBs and glass shards. Even mashed potatoes and scrambled eggs felt gritty on my tongue.

    Smoothies, cream soups, poached eggs, puréed vegetables, avocados, bananas and soft foods to start are best. I found giving my mouth less to chew and handle, the better. After I could struggle through those, I put everything in the mini chopper and made my soups and foods that consistency. Then after I could get through the mini food processor minced foods, I moved to using my knife skills, and did a 1/4 x 1/4 inch brunois dice. I can now just chop most veggies. Maybe an inch x an inch. I can cook my vegetables less also.

    I found that if I modified the way I cooked and prepared my foods, and listened to my mouth (and my stricture :-/ ) I had much better success, instead of trying to eat the 'normal' food that I used to eat. I have had to completely change my way of thinking, what I ate, and how I prepped and cooked my food. Despite my eating issues, I am eating better foods and have a better diet now, than I ever have in my life.

    I know you are impatient to eat again. Believe me!!!!! I know. It does require some patience tho. Wishing you normal eating quickly! In the meantime, take the baby steps, and then before you know it you will be at a walk- then run.

    Early
    At your stage I was still surviving on mostly Ensure, but also starting to supplement with pancakes drenched in butter and maple syrup. Does take time, and the next number of months are for the trial and error a lot of us go thru. Would ask you to consider not rushing it on account of your mouth and throat are still in the healing mode, and do not need to be irritated by foods that do that. I could be wrong, but I am convinced my slow re-start on regular foods allowed my rad-damaged areas to better heal, so that by 6-months out I was enjoying onions, etc., with enough flavor to really register to the new taste buds.

    kcass
  • Hq18
    Hq18 Member Posts: 24
    #7
    MarineE5 said:

    Time range
    Hq,

    I can understand your desire to get back eating what you once did. Unfortunately, our bodies/face/neck take a beating from the Radiation we go through. Each of us recover at a different pace, age and health play a part of it, but what I was told is this. Even though you complete your radiation on a certain date, the radiation is accumlative and continues to work on us. We go thru the " Cooking " period for roughly 4-8 weeks after the final radiation treatment.

    With that said, you may still be in the " Cooking " stage for another week or two. My taste buds started to wake up roughly in week 5. I tasted milk first, Ketchup burned my throat for nearly a year. Trial and error will continue for some time when eating. What doesn't work one month will work another month. Please take it slow, as I had 4 choking episodes in my first year. The swelling in our neck takes some time to go down and the passageway is still a bit narrow. Start with soft foods and work your way up once again. Keep fluids at hand to wash down your foods, even if it is yogurt you are eating.

    My Best to You and Everyone Here

    Thank you for the input
    Thank you for the input MarineE5!
  • Hq18
    Hq18 Member Posts: 24
    #8
    Pam M said:

    Welcome to Our BIG Club
    Hq,
    I got rid of my PEG last summer. Like you, a month out, I was not eating enough for my tube to be removed - it took me like three months BUT I was eating VERY WELL before the removal - I felt like I could have had it removed sooner (yet the doc with years of education and experience disagreed with me - hmmmm). I started out regaining taste the way I lost it - slowly at first, then quickly. Are you on pain meds? I took pain meds for a while to help me be able to eat - I had to plan eating, and take medicine over an hour before I wanted to eat, but the medicine helped. At two months, I'd say my taste was almost completely recovered. I think I may have been a little ahead of the curve on that one.

    The bad news is some foods will probably burn for quite some time. It took a while for me to be able to eat my beloved catsup again. Same for salad dressing and citrus fruits. Now, I can eat mild salsa and all fruits. A year a three months out, some foods still burn, but not enough to keep me from eating them. I still can't eat medium salsa (used to eat LOTS of it), but I'm OK with that. Some days, some salad dressings are a little harsh, too.

    I had to watch textures for a while. Smoothies were my friend part of the time - my goal was just to hit my calorie goals, and you can really load up calories in smoothies and/or nutrition drinks. So I would eat what "normal" food I could, and fill in caloric gaps with smoothies. I wouldn't do normal milkshakes for calories - milk adds to your phlegm issues.

    I think it sounds like you're "normal" here - I think the vast majority of us here were frustrated at our rate of recovery after treatment, even though we'd been told it was normal. Nothing like biting into something warm with substance, and gobbling it up.

    I still have a few eating issues, but they are very minor. I can eat well enough so that I have actually gained 25 pounds in the past year, and now find myself needing to eat LESS - what a welcome switch.

    Here's hoping your mouth and throat kick into recovery overdrive. The wait is irritating, though - I'll give you that.

    Oh - and on the phlegm - I've read that club soda helps break it down a lot. I didn't try that, because of what I called "carbonation burn", but several people recommended it. Several folks also recommend glutamine powder to help cut the burn. I made sure I drank lots of water, and also did netti pot nasal rinses.

    Pam-Thanks! Yes they gave
    Pam-Thanks! Yes they gave me oxocodone for pain and some numming meds called Benmylid to take before meals. The problem I am having is that I dont want to take the oxocodone all day because it does make me drowsy and I feel pain is not bad enough to warrant that, so only take that at night when go to bed. I take the Benmylid some times but less dosage because when I take full dosage I find it difficult to feel if even swallowed everything because of how num it makes it. The smoothies sound fantastic but I find that alot of those things burn my throat. It almost seems like anything with milk in them burns my throat as well. I think I will look for some of that glutamine powder to see if that helps, so thank you! I know my patience is being tested and I cannot wait for that day that I can any of the foods I like :)
  • Hq18
    Hq18 Member Posts: 24
    #9
    sweetblood22 said:

    I agree with some of the other comments. At a month out, you're
    Barely done cooking or peaking. I'm not going to talk time frames with me, because mine were dire. Every one is so different. As far as the burn goes, I would really recommend the L-Glutamine powder. 1 heaping tsp in a glass of water. Swish and swallow. You can get it at a vitamin store like GNC. Right now, just bought more yesterday, they have a buy one get half off another. This can help with the burning and the mucositis. As far as that frustrating gritty feel that foods have, I know how that sucks. I didn't start to eat until 9months after because my mouth was so bad and everything even then, felt like sawdust, BBs and glass shards. Even mashed potatoes and scrambled eggs felt gritty on my tongue.

    Smoothies, cream soups, poached eggs, puréed vegetables, avocados, bananas and soft foods to start are best. I found giving my mouth less to chew and handle, the better. After I could struggle through those, I put everything in the mini chopper and made my soups and foods that consistency. Then after I could get through the mini food processor minced foods, I moved to using my knife skills, and did a 1/4 x 1/4 inch brunois dice. I can now just chop most veggies. Maybe an inch x an inch. I can cook my vegetables less also.

    I found that if I modified the way I cooked and prepared my foods, and listened to my mouth (and my stricture :-/ ) I had much better success, instead of trying to eat the 'normal' food that I used to eat. I have had to completely change my way of thinking, what I ate, and how I prepped and cooked my food. Despite my eating issues, I am eating better foods and have a better diet now, than I ever have in my life.

    I know you are impatient to eat again. Believe me!!!!! I know. It does require some patience tho. Wishing you normal eating quickly! In the meantime, take the baby steps, and then before you know it you will be at a walk- then run.

    Thank you for the input
    Thank you for the input Sweetblood22! I really appreciate the insight. I am usually a pretty patient person but with this I am running out of patience really fast because I do want different foods : )

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