getting off the peg tube
I need help! I have finished treatment now 6 weeks 30 radiation sessions for tongue base cancer and am doing well I am told, but I am having a heck of a time getting back to eating. I can swallow and some foods are going down, but it seems like it is all trial and error.
It is too easy to use the Peg tube. I live alone so i am doing this myself. Can anyone give me some suggestions on what to do and any plan that worked for them. I can do things like bananas and cottage cheese, soup, shakes, very small amounts. What is a realist time frame?
Any help you can give me is greatly appreciated.
What seems so simple is incredibly hard!
Comments
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Take time
Not sure if this will help but mom had throat cancer and it took her about 3 months to get back to "normal" eating, she at first did potatoes, soups easily swallowable foods and then went into chicken, pizza, hot dogs etcc.
Its very hard and it takes time but it will all come around for you think it depends on your healing and scar tissue also, sounds like your doing great once you start to eat things may tatse different but in time it will be okay i think it took mom about 6-8 months before things were "GREAT" for her she ended up back on peg tube before long she was only able to eat "normal" for maybe 2 months:(
I wish you best of luck and i hope this helped some what just wanted to give you an idea about how long. It seems like forever but just keep eating the simple things to give you a taste at least and try small small tiny baby pieces of differnt things mom used to cut up her chicken into the smallest pieces becasue she was so anxious to eat but it didnt taste right so she just waited and would try again.
Best Wishes1 -
take timehunpot said:Take time
Not sure if this will help but mom had throat cancer and it took her about 3 months to get back to "normal" eating, she at first did potatoes, soups easily swallowable foods and then went into chicken, pizza, hot dogs etcc.
Its very hard and it takes time but it will all come around for you think it depends on your healing and scar tissue also, sounds like your doing great once you start to eat things may tatse different but in time it will be okay i think it took mom about 6-8 months before things were "GREAT" for her she ended up back on peg tube before long she was only able to eat "normal" for maybe 2 months:(
I wish you best of luck and i hope this helped some what just wanted to give you an idea about how long. It seems like forever but just keep eating the simple things to give you a taste at least and try small small tiny baby pieces of differnt things mom used to cut up her chicken into the smallest pieces becasue she was so anxious to eat but it didnt taste right so she just waited and would try again.
Best Wishes
thanks so much for your encouragement, I know it will take time, I just did not know it would be so hard. I have done a lot of hard things in my life, but this tops them. But I know I can do it.
Thanks for taking time to comment.
happy New Year0 -
Josie,
No I am not using
Josie,
No I am not using that drink, I am using osmalite, a complete food in the can Yuk Will look for Jevity.Thanks for giving me your suggestions.
Nancy0 -
Peg tubesanctuario said:Josie,
No I am not using
Josie,
No I am not using that drink, I am using osmalite, a complete food in the can Yuk Will look for Jevity.Thanks for giving me your suggestions.
Nancy
Here's my story for what it's worth. After extensive neck surgery from MTC, I was left with a trache and a peg tube. The first few months I concentrated on breathing. I didn't worry too much about eating. After close to a year, I began to experiment with different things, textures etc that I could swallow without aspirating into my lungs. I never worried about the canned liquid I was drinking, I left that to the nutritionists. What was the difference, I couldn't taste it anyway?
I went to the U of Mich Hospital Speech-Pathology dept. and was taught various tongue exercises as the tongue is very important in swallowing. What a difference.
After about 4 weeks began to eat a variety of foods, made steady progress and 3 months ago, the PEG tube was removed. (Hold your breathe for that one,) They just yank it out. Sounds worse than it really is.
Anyway the moral of the story is be patient. Try different textures and see what you can eat. See if you can find a speech therapist that can help with swallowing techniques. I/m sure it will all resolve itself in time. Good Luck. Tom0 -
Hello,
Thnaks so much for
Hello,
Thnaks so much for your words of encouragement, I know I should be able to do it, it is getting out there and getting the food mix to try. Three months is fantastic!0 -
Tubesanctuario said:Hello,
Thnaks so much for
Hello,
Thnaks so much for your words of encouragement, I know I should be able to do it, it is getting out there and getting the food mix to try. Three months is fantastic!
I had mine removed after 2 months of use. Once I was allowed to start food by mouth, it was my goal to get it out as fast as possible. I would start with some food by mouth and finish off with the cans to keep up with the amount of calories required.
When it was time to have it removed I did ask the doctor for a bullet to bite on, but all he had to offer me was a stick to bite on. I bit right through the stick.0 -
NEW TO BOARD. CAREGIVERSASH said:Tube
I had mine removed after 2 months of use. Once I was allowed to start food by mouth, it was my goal to get it out as fast as possible. I would start with some food by mouth and finish off with the cans to keep up with the amount of calories required.
When it was time to have it removed I did ask the doctor for a bullet to bite on, but all he had to offer me was a stick to bite on. I bit right through the stick.
I am a caregiver for a base of tongue cancer patient who is now two years after surgery and radiation having trouble keeping up the calories and swallowing in general. I was wondering if anyone had a lead on:
1. Treatments or ideas about swallowing.
2. Best liquid diet and how to prepare it.
3. Any other ideas.
Thanks in advance!
Lee0 -
soft foods and eatingsolodoc said:NEW TO BOARD. CAREGIVER
I am a caregiver for a base of tongue cancer patient who is now two years after surgery and radiation having trouble keeping up the calories and swallowing in general. I was wondering if anyone had a lead on:
1. Treatments or ideas about swallowing.
2. Best liquid diet and how to prepare it.
3. Any other ideas.
Thanks in advance!
Lee
Welcome solodoc,
As for the swallowing see if the one you are caring for can see a speech pathologist that specializes in swallowing. You can check with http://www.swallowingdisorders.org and see if there is someone in your area that might be able to help.
As far as recipes and liquids, there is a book called "Easy to Swallow, Easy to Chew Cookbook" and "The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties". Both are available at Amazon.com. The first is written by several speech pathologists that specialize in swallowing disorders. I'm not sure about the author of the second, but it might help.
Good luck you the both of you.0 -
thank you for the cookbookSASH said:soft foods and eating
Welcome solodoc,
As for the swallowing see if the one you are caring for can see a speech pathologist that specializes in swallowing. You can check with http://www.swallowingdisorders.org and see if there is someone in your area that might be able to help.
As far as recipes and liquids, there is a book called "Easy to Swallow, Easy to Chew Cookbook" and "The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties". Both are available at Amazon.com. The first is written by several speech pathologists that specialize in swallowing disorders. I'm not sure about the author of the second, but it might help.
Good luck you the both of you.
thank you for the cookbook suggestions, my dad hasn't been able to chew since his surgery 7 months ago. it has been difficult finding/making food that is easy for him to eat. i'll try this too, we're trying to keep his weight and strength up for radiation treatments
elaine0 -
Keeping weight upbany said:thank you for the cookbook
thank you for the cookbook suggestions, my dad hasn't been able to chew since his surgery 7 months ago. it has been difficult finding/making food that is easy for him to eat. i'll try this too, we're trying to keep his weight and strength up for radiation treatments
elaine
The other thing you might want to look into is weight gain powder. I used one that I could add to my liquid nutrition to add up to 700 calories.0 -
Peg Tube
I still have my PEG tube in place. It took me 4 months before I slowly started eating by mouth, small portions, soft foods, and because of my dry mouth from radiation knocking out my salivary glands, I must have something to drink to wash things down. My doctors are not in a hurry to take the tube out due to the radiation damage and it being cold and flu season. The thought is that my throat can become irritated and swell not allowing me to swallow. Up until 4 months after radiation I would gag, throw up, or choke when I tried to eat. Some foods still burn so I'm careful what I eat. I am now 7 months after radiation and can eat just about anything but still need to eat slowly and wash it down with a drink of some sort, and also choose foods that are not too spicy. Definitely cannot talk and eat at the same time now. My mother would be proud. You will need to experiment as to what's best for you, but do not be in a hurry. That was a big mistake for me and I fear I did a little more damage to my throat by trying too much too soon. The PEG tube I look at as my emergency friend for now. I went from 225LBS to 175LBS so was glad it was there to rescue me after I tried to tough it out without having a PEG tube. It does not bother me at all. I won't miss it when it's gone, but I'm glad I finally got one. That's just my experience - Hope it helps - (Patience)is key.0 -
My pegtube experience
Hi, I am a cancer survivor from base of tongue. A friend in our support group used her peg tube for over 5 months, and when I last heard she was barely able to eat anything solid after that time. I was encouraged to eat solid food "as soon as possible" after radiation by the oncologist. This was a mistake! I had a lot of difficulty and did not realize that my recovery from radiation would be long term (4 months now). This was mainly due to the weakness to my throat. I stopped using the tube about 1 week after radiation was discontinued. The long term effect is that my throat was not yet ready and I now must deal with a large infection very near my larnx. But after all this I would not go back to my tube due to the problems I had with "priming my intestines" to accept solid food. That, for me was worse than anything else. If I had to start over I would have used my peg tube for at least 2 months in order to feel confidant that my throat was ready. I hope that this hepls you. Sincerely, Craig Griffin, Munster, IN.0 -
Looking for caregiver supportsolodoc said:NEW TO BOARD. CAREGIVER
I am a caregiver for a base of tongue cancer patient who is now two years after surgery and radiation having trouble keeping up the calories and swallowing in general. I was wondering if anyone had a lead on:
1. Treatments or ideas about swallowing.
2. Best liquid diet and how to prepare it.
3. Any other ideas.
Thanks in advance!
Lee
Lee, I am a recent base of tongue cancer survivor. I still have my tube, but do not use it. The doctors are not all convinced that I am cancer free yet. I began eating solid food 5 days after radition treatment ended. That was a mistake. But the oncologist encouraged me to eat solid food "as soon as possible". For your concerns I would say: 1) Swallowing comes back very slowly. The most important thing for me was to get a deep breath before swallowing. That way if I choked, I was better prepared for it. I had the best results with scrambled eggs, and french toast. I still have to swallow sometimes 4 times to get it down. 2) Other than "Insure" I don't know. 3) It is good to gain confidence very very slowly. Don't try and make progress with building back the muscles too fast. When I really felt ready, I tried a Subway meatball marinara sandwich. It was the closest thing to my "pre-cancer" diet that I tried, and I felt as though I had made progress. I have a question also for you- Do you have any experience with a lot swelling in the neck area during recovery. I no longer have the upper lymph nodes or salivary glands working (4 months after radiation). Most sincerely, Craig Griffin.0 -
Swelling/ScarringCraig_Griffin said:My pegtube experience
Hi, I am a cancer survivor from base of tongue. A friend in our support group used her peg tube for over 5 months, and when I last heard she was barely able to eat anything solid after that time. I was encouraged to eat solid food "as soon as possible" after radiation by the oncologist. This was a mistake! I had a lot of difficulty and did not realize that my recovery from radiation would be long term (4 months now). This was mainly due to the weakness to my throat. I stopped using the tube about 1 week after radiation was discontinued. The long term effect is that my throat was not yet ready and I now must deal with a large infection very near my larnx. But after all this I would not go back to my tube due to the problems I had with "priming my intestines" to accept solid food. That, for me was worse than anything else. If I had to start over I would have used my peg tube for at least 2 months in order to feel confidant that my throat was ready. I hope that this hepls you. Sincerely, Craig Griffin, Munster, IN.
I have resisted responding to this because I did not want to put a damper on the generally pro-active, positive, go-for-it attitude of early respondents, an attitude I support 100%.
But I have been reading this, and other posts regarding the same subject, and have wondered what the heck is wrong with me. I came out of the hospital after a 15-hour surgery and was ready to drink water and eat a lot of things almost immediately, some that my primary caregiver frowned upon.
I DID have a PEG tube, and I used that for the most part, but I had hopes to be back to eating regularly in very short order, and some of the things I was eating in small pieces were very encouraging in that regard.
Then I had radiation treatment for seven weeks. And things changed.
It has been perplexing to me for some time that while I had half of my tongue replaced, I can not seem to eat as well as others who have lost MOST of their tongues. And because I am rather competitive, it REALLY annoyed me.
The fact is that the radiation created some swelling and scarring, some of which went away (I had surgery in October of '05, followed by chemo and the rads beginning in November), while some of it, some of it crucial, did not.
It is hard for me to swallow even a large pill. I had an endoscopy following additional surgery for lung cancer, and its purpose was twofold, one to remove any doubt that I had a leak in the gastro path, the second to see if a dilation would widen my throat. The answer to both was No. Good news, bad news.
I do eat. I eat many things. Steak is not one of them, and while that is a goal, I can live without it.
I bring all of this up to suggest to some of you that you should NOT be in a hurry to get rid of your PEG tube. Yes, you WANT to get rid of it, and I certainly wouldn't want to dissuade anyone from that goal: it is MY goal. But do not be frustrated if you are not done with it in two months, or five months, or even a year. As someone has suggested, it is a nice safety blanket or whatever, to assure that you continue to get nutrition while your ability to eat on your own is still borderline for whatever reason.
You all have my best wishes with respect to getting rid of the tube, and for good health. There are some great testaments to willpower and determination among the responses to this post. Remember, though, that no two cases are the same. Do what YOU have to do to get healthy, while taking the advice of others only as it truly applies to you.
Take care,
Joe0 -
peg tube
my husband was on the PEG tube for 9 months. All during treatment and 6 months after. He was in pain and
could not swallow so well. I feed him whey protein mixed with flax oil and fish oil and a multitude of vegies or fruit
blended in the blender. He lost 53 pounds during treatment going from 160 to 107 lb.
But good news is he is 7 years in remission from SCCH&N stage IV.
He is regaining saliva and a healthy appetite ...it took a good 5-6 years to be able to eat most fruits.
and he says foods never taste the same as he remembered them.
Life is good! WE wish you the best....and a little advice stay off SUGAR ...Cancer feeds on sugar. Try stevia or Xylitol or Agave syrup.
They are all low on the glycemic index.0 -
peg tube
my husband was on the PEG tube for 9 months. All during treatment and 6 months after. He was in pain and
could not swallow so well. I feed him whey protein mixed with flax oil and fish oil and a multitude of vegies or fruit
blended in the blender. He lost 53 pounds during treatment going from 160 to 107 lb.
But good news is he is 7 years in remission from SCCH&N stage IV.
He is regaining saliva and a healthy appetite ...it took a good 5-6 years to be able to eat most fruits.
and he says foods never taste the same as he remembered them.
Life is good! WE wish you the best....and a little advice stay off SUGAR ...Cancer feeds on sugar. Try stevia or Xylitol or Agave syrup.
They are all low on the glycemic index.0 -
jevityjosie_5 said:Peg Tube
i have a tube also. sometimes its ok; sometimes it hurts. Are u using the protein drink "Jevity"? has a lot of vit. and protein. Also scrambled eggs, jello, whip cream, (soup by mouth)applesauce, ice cream, 7 up, and sort of thing that help any? josie
Josie
make sure the Jevity is not loaded with sugar ...cancer feeds on sugar . Try a high protein whey and make your own liuid foods in the blender. Mix whey protein with your flaxoil and bananas ,strwberries etc.There are protein drinks that are sweeten with stevia or Lohan or xylitol which are all low on glycemic index. You want to starve your cancer by staying off sugar, and processed carbohydrates.0 -
jevityjosie_5 said:Peg Tube
i have a tube also. sometimes its ok; sometimes it hurts. Are u using the protein drink "Jevity"? has a lot of vit. and protein. Also scrambled eggs, jello, whip cream, (soup by mouth)applesauce, ice cream, 7 up, and sort of thing that help any? josie
Josie
make sure the Jevity is not loaded with sugar ...cancer feeds on sugar . Try a high protein whey and make your own liuid foods in the blender. Mix whey protein with your flaxoil and bananas ,strwberries etc.There are protein drinks that are sweeten with stevia or Lohan or xylitol which are all low on glycemic index. You want to starve your cancer by staying off sugar, and processed carbohydrates.0
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