Getting Rid of Peg
Comments
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Have you had your swallowing checked?
The ENT can look down and make sure you are not having restriction issues, you can do barium swallows while a radiologist watches on the scope, or you can have a speech therapist feel/watch while you swallow and let you know how it's going. Soft solids can get caught on a swollen epiglotis, so it's possible you are still too swollen to go there.
BTW, mashed potatoes are pretty abrasive, and fruit acids might be irritating to a sore throat - it differs among folks. Plain scrambled eggs are a bit dry for Doug, but he can handle ones made with cream or half-and-half, with a slice or two of Velveeta melted in during scrambling. A diet nightmare, I'll admit, and it would never have been allowed in the house before cancer.
The superthread has, I think, a bunch of good milkshake recipes - check those out, as you will probably need to get a bunch of your calories from liquids as you transition. Keep trying until you find something that works - I was amazed that Doug was able to drink Boost Plus, as I think it tastes like crap, but it doesn't bother him.
As far as encouragement - you've made it this far, so congratulations! We ate at a Portuguese restaurant last night (Doug's 6 months and a bit out) and he could eat AND taste the food (everything was well lubricated with olive oil) as well as drink wine (vinho verde, a mild white, served very cold). Five months ago, that seemed so far away - you'll get there soon, I hope.0 -
Hi teacuplady
For being a month out, at least you are eating/drinking some things by mouth. I had a peg tube for 18 months, which is a very long time. Most people get rid of theres in a few months.
First, mangos, can be very irratating. (any fruits, really- but especially, pineapple, mango, kiwi, and citrus. I cannot eat the first three at all, but I can do oranges at this point. I also had terrible mouth sores, and I really believe L-Glutamine powder has helped my mouth a great deal. I still add it to my smoothies everyday. One heaping tsp full. Bananas and avocados are great. Mashed potatoes, are not that easy either. Also scarmbled eggs aren't easy. You have to make them very creamy, low flame, a gob of butter and keep them soft. Poached eggs slide down much better. Keep the yolks soft, egg whites cooked through and tender. I am a pro at making them over easy this way, with no crispness, just tender white and perfect viscosity on the yolk.
Creamed and pureed soups go down nicely. I have a HealthMaster, some others have a Vitamix, or some other very high speed blender. I make fruit and veggie smoothies to drink with my meals. Thicker beverages with a little body, go down better than thin liquids.
I had to be stretched out three times for strictures in my esophagus. Once before cancer and twice after radiation because of the damage that did. I still have a stricture and I struggle with eating. It takes perseverance, and a new way of cooking and prepping my foods, but i am getting it down to a science. I still drink at least 50% of my calories. But the last couple days, I have actually eaten fried chicken thighs! So there is hope!
So, definitely let your doctor know, and see about taking a swallowing study to see what if anything may need to be dialated. It could be that you are just very swollen at this point, as you may be just about done cooking at this point. You peak a couple weeks after treatment and you are just a month out.
On the first page on this board, is a thread entitled:
HNC Superthread. A collection of links with answers to frequently asked questions. EXCELLENT INFORMATION FOR THOSE NEW TO CSN.
I would encourage you to check it out, since there are links to info on things that could be helpful to you, like swallowing exercises, juicing and smoothie recipes, peg tube info...
In the meantime keep trying to swallow easy items, and maybe try something new every day or so. It takes time, patience, trial and error, and a lot of wasted food.0 -
Eating
You are doing great! Buzz at 1 month out was only drinking liquids. Maybe you are not ready for solids and should stick to milkshakes. Buzz really liked the Scandishakes which yield 600 calories when mixed with whole milk. Puddings also work well. When your throat is sufficiently healed, you will be able to swallow better. Buzz still coughs a bit when he drinks thin liquids. So you will get there but you need to be patient with yourself. Karen0 -
Hi teacupladysweetblood22 said:Hi teacuplady
For being a month out, at least you are eating/drinking some things by mouth. I had a peg tube for 18 months, which is a very long time. Most people get rid of theres in a few months.
First, mangos, can be very irratating. (any fruits, really- but especially, pineapple, mango, kiwi, and citrus. I cannot eat the first three at all, but I can do oranges at this point. I also had terrible mouth sores, and I really believe L-Glutamine powder has helped my mouth a great deal. I still add it to my smoothies everyday. One heaping tsp full. Bananas and avocados are great. Mashed potatoes, are not that easy either. Also scarmbled eggs aren't easy. You have to make them very creamy, low flame, a gob of butter and keep them soft. Poached eggs slide down much better. Keep the yolks soft, egg whites cooked through and tender. I am a pro at making them over easy this way, with no crispness, just tender white and perfect viscosity on the yolk.
Creamed and pureed soups go down nicely. I have a HealthMaster, some others have a Vitamix, or some other very high speed blender. I make fruit and veggie smoothies to drink with my meals. Thicker beverages with a little body, go down better than thin liquids.
I had to be stretched out three times for strictures in my esophagus. Once before cancer and twice after radiation because of the damage that did. I still have a stricture and I struggle with eating. It takes perseverance, and a new way of cooking and prepping my foods, but i am getting it down to a science. I still drink at least 50% of my calories. But the last couple days, I have actually eaten fried chicken thighs! So there is hope!
So, definitely let your doctor know, and see about taking a swallowing study to see what if anything may need to be dialated. It could be that you are just very swollen at this point, as you may be just about done cooking at this point. You peak a couple weeks after treatment and you are just a month out.
On the first page on this board, is a thread entitled:
HNC Superthread. A collection of links with answers to frequently asked questions. EXCELLENT INFORMATION FOR THOSE NEW TO CSN.
I would encourage you to check it out, since there are links to info on things that could be helpful to you, like swallowing exercises, juicing and smoothie recipes, peg tube info...
In the meantime keep trying to swallow easy items, and maybe try something new every day or so. It takes time, patience, trial and error, and a lot of wasted food.
Welcome to the family here on CSN. I agree with Sweet on trying to eat fruit that is something you might be able to do in a year or so. You may be finish with treatment but inside you are still burning from the effect of the radiation and chemo and that might continue for a few weeks after treatment stops. Give it time and keep trying little by little and don’t overdo it in time you will notice your taste coming back and your throat getting better to where you will be able to start eating again.
All the best to you
Hondo0 -
Getting Rid of PegDrMary said:Have you had your swallowing checked?
The ENT can look down and make sure you are not having restriction issues, you can do barium swallows while a radiologist watches on the scope, or you can have a speech therapist feel/watch while you swallow and let you know how it's going. Soft solids can get caught on a swollen epiglotis, so it's possible you are still too swollen to go there.
BTW, mashed potatoes are pretty abrasive, and fruit acids might be irritating to a sore throat - it differs among folks. Plain scrambled eggs are a bit dry for Doug, but he can handle ones made with cream or half-and-half, with a slice or two of Velveeta melted in during scrambling. A diet nightmare, I'll admit, and it would never have been allowed in the house before cancer.
The superthread has, I think, a bunch of good milkshake recipes - check those out, as you will probably need to get a bunch of your calories from liquids as you transition. Keep trying until you find something that works - I was amazed that Doug was able to drink Boost Plus, as I think it tastes like crap, but it doesn't bother him.
As far as encouragement - you've made it this far, so congratulations! We ate at a Portuguese restaurant last night (Doug's 6 months and a bit out) and he could eat AND taste the food (everything was well lubricated with olive oil) as well as drink wine (vinho verde, a mild white, served very cold). Five months ago, that seemed so far away - you'll get there soon, I hope.
Thanks so much for your comments and help! I went to my ENT today, and she said everything was healing fine and I could start taking thick liquids and then soft foods. I have had two speech therapy sessions to learn swallowing exercises. It has really been helpful to hear from other people who have gone through this. I'm going to start with a homemade chocolate milkshake tonight.0 -
PEG tubesweetblood22 said:Hi teacuplady
For being a month out, at least you are eating/drinking some things by mouth. I had a peg tube for 18 months, which is a very long time. Most people get rid of theres in a few months.
First, mangos, can be very irratating. (any fruits, really- but especially, pineapple, mango, kiwi, and citrus. I cannot eat the first three at all, but I can do oranges at this point. I also had terrible mouth sores, and I really believe L-Glutamine powder has helped my mouth a great deal. I still add it to my smoothies everyday. One heaping tsp full. Bananas and avocados are great. Mashed potatoes, are not that easy either. Also scarmbled eggs aren't easy. You have to make them very creamy, low flame, a gob of butter and keep them soft. Poached eggs slide down much better. Keep the yolks soft, egg whites cooked through and tender. I am a pro at making them over easy this way, with no crispness, just tender white and perfect viscosity on the yolk.
Creamed and pureed soups go down nicely. I have a HealthMaster, some others have a Vitamix, or some other very high speed blender. I make fruit and veggie smoothies to drink with my meals. Thicker beverages with a little body, go down better than thin liquids.
I had to be stretched out three times for strictures in my esophagus. Once before cancer and twice after radiation because of the damage that did. I still have a stricture and I struggle with eating. It takes perseverance, and a new way of cooking and prepping my foods, but i am getting it down to a science. I still drink at least 50% of my calories. But the last couple days, I have actually eaten fried chicken thighs! So there is hope!
So, definitely let your doctor know, and see about taking a swallowing study to see what if anything may need to be dialated. It could be that you are just very swollen at this point, as you may be just about done cooking at this point. You peak a couple weeks after treatment and you are just a month out.
On the first page on this board, is a thread entitled:
HNC Superthread. A collection of links with answers to frequently asked questions. EXCELLENT INFORMATION FOR THOSE NEW TO CSN.
I would encourage you to check it out, since there are links to info on things that could be helpful to you, like swallowing exercises, juicing and smoothie recipes, peg tube info...
In the meantime keep trying to swallow easy items, and maybe try something new every day or so. It takes time, patience, trial and error, and a lot of wasted food.
Sweetblood22,
your post was very informative! My doc really did not want me to have a tube inserted but when I went from 134 to 103 pounds in 3 weeks during radiation it had to happen. I have had the PEG in for 8 months and am happy to say it comes out on the 15th of July. I struggled with all foods. Had two stretches and 2 months of treatment with a speech therapist where they did the electrodes on my neck. What a difference!
Some things I will never eat again but I try everything and some things I wash down with either milk or water. I am very very fortunate that my taste buds came back 100%! My dry mouth is almost completely gone so eating is better.
And remember to those who are having treatment that when your radiation is done, you still are being radiated for about 12 weeks after. Don't freak out and don't give up. Just know that your life has been altered and adjust.
I tell my friends that we all take swallowing and eating for granted! Ah, radiation; the gift that keeps on giving. BUT: It saved my life!0 -
PEG tubesweetblood22 said:Hi teacuplady
For being a month out, at least you are eating/drinking some things by mouth. I had a peg tube for 18 months, which is a very long time. Most people get rid of theres in a few months.
First, mangos, can be very irratating. (any fruits, really- but especially, pineapple, mango, kiwi, and citrus. I cannot eat the first three at all, but I can do oranges at this point. I also had terrible mouth sores, and I really believe L-Glutamine powder has helped my mouth a great deal. I still add it to my smoothies everyday. One heaping tsp full. Bananas and avocados are great. Mashed potatoes, are not that easy either. Also scarmbled eggs aren't easy. You have to make them very creamy, low flame, a gob of butter and keep them soft. Poached eggs slide down much better. Keep the yolks soft, egg whites cooked through and tender. I am a pro at making them over easy this way, with no crispness, just tender white and perfect viscosity on the yolk.
Creamed and pureed soups go down nicely. I have a HealthMaster, some others have a Vitamix, or some other very high speed blender. I make fruit and veggie smoothies to drink with my meals. Thicker beverages with a little body, go down better than thin liquids.
I had to be stretched out three times for strictures in my esophagus. Once before cancer and twice after radiation because of the damage that did. I still have a stricture and I struggle with eating. It takes perseverance, and a new way of cooking and prepping my foods, but i am getting it down to a science. I still drink at least 50% of my calories. But the last couple days, I have actually eaten fried chicken thighs! So there is hope!
So, definitely let your doctor know, and see about taking a swallowing study to see what if anything may need to be dialated. It could be that you are just very swollen at this point, as you may be just about done cooking at this point. You peak a couple weeks after treatment and you are just a month out.
On the first page on this board, is a thread entitled:
HNC Superthread. A collection of links with answers to frequently asked questions. EXCELLENT INFORMATION FOR THOSE NEW TO CSN.
I would encourage you to check it out, since there are links to info on things that could be helpful to you, like swallowing exercises, juicing and smoothie recipes, peg tube info...
In the meantime keep trying to swallow easy items, and maybe try something new every day or so. It takes time, patience, trial and error, and a lot of wasted food.
Sweetblood22,
your post was very informative! My doc really did not want me to have a tube inserted but when I went from 134 to 103 pounds in 3 weeks during radiation it had to happen. I have had the PEG in for 8 months and am happy to say it comes out on the 15th of July. I struggled with all foods. Had two stretches and 2 months of treatment with a speech therapist where they did the electrodes on my neck. What a difference!
Some things I will never eat again but I try everything and some things I wash down with either milk or water. I am very very fortunate that my taste buds came back 100%! My dry mouth is almost completely gone so eating is better.
And remember to those who are having treatment that when your radiation is done, you still are being radiated for about 12 weeks after. Don't freak out and don't give up. Just know that your life has been altered and adjust.
I tell my friends that we all take swallowing and eating for granted! Ah, radiation; the gift that keeps on giving. BUT: It saved my life!0 -
Nwasen - peg tube removalnwasen said:PEG tube
Sweetblood22,
your post was very informative! My doc really did not want me to have a tube inserted but when I went from 134 to 103 pounds in 3 weeks during radiation it had to happen. I have had the PEG in for 8 months and am happy to say it comes out on the 15th of July. I struggled with all foods. Had two stretches and 2 months of treatment with a speech therapist where they did the electrodes on my neck. What a difference!
Some things I will never eat again but I try everything and some things I wash down with either milk or water. I am very very fortunate that my taste buds came back 100%! My dry mouth is almost completely gone so eating is better.
And remember to those who are having treatment that when your radiation is done, you still are being radiated for about 12 weeks after. Don't freak out and don't give up. Just know that your life has been altered and adjust.
I tell my friends that we all take swallowing and eating for granted! Ah, radiation; the gift that keeps on giving. BUT: It saved my life!
Good for you, glad it's coming out. I am happy that you found my posts informative.
That is true, we all do take swallowing for granted, until we go through this nightmare. I know I no longer take it for granted, and I am thrilled to be eating so many foods again. It may take me 2 hrs to eat, but at least I'm eating it and it ain't through a tube anymore.
Wait till that thing isn't poking you in the gut 24/7 anymore, you will feel so much better and comfy. Can sleep on your belly.
Plus you will have a new cool scar that looks like a second belly button. Can invent all kinds of stories how you got it. Lol 0 -
Hello Teacuplady, I really
Hello Teacuplady, I really don't have any advice to offer, it seems like everyone has given you great advice already. I did want to comment about your saying something is in the back of your throat because my wife is 3 months post treatment and she says the same thing. It's frustrating for her because she can't cough it up, spit it out or swallow it. I just tell her it will get better with time. I can't wait to tell her tomorrow that she is not the only one to experience that uncomfortable sensation. Anyways it's good you found this website because the help and advice you will receive here is free but the benefits are "priceless". Don't be too hard on yourself and give it time, you are going to be fine. Wishing you the Best, Homer & Connie0
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