Emotional implications of having a feeding tube

Posted by patriciagsr @patriciagsr, Jun 12, 2019

Hello, I have been trying to find a support group for people like me…After a skull base paraganglioma removal surgery I have disfagia and disfasia, can't swallow and my voice was gone. Still don't know if these will be permanent or will recover. Having 2 hours of swallowing daily.
I have a Gtube since Dec and have been through an emotionally rollercoast since then. Loosing the ability to eat means loosing social life in many aspects. I feel I wont be able to eat again, even though I should do but cant see the light at the end of the tunnel.
The formulas were a disaster to me, ended up vomiting and feeling bloated so I started a blending diet some weeks ago. I feel and tolerate food much better but it is very complicated because I have to do the diet everyday, feed myself 5 times a day, feed myself even if I am not hungry.
So…anyone feeling similar ??
I hope we can support each other
Thanks

Liked by Leonard, walisky, capausz

@patriciagsr, I have never experienced what you have. My battles are different. However, I recognize your pain and frustration and want you to know you have my support. I will be watching for updates from you and, hopefully, you will find some answers from this wonderful group of warriors.

Liked by Leonard, patriciagsr

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Great topic, Patricia. I'm bringing in fellow members @jeffk @deborahe @alpaca @puprluvr and @beanglow, who know first hand about the emotional implications of having to have a feeding tube and all that comes with that, such as the loss of socialization and food. I hope they'll share their experiences and tips for seeing the light at the end of the tunnel.

@patriciagsr, I can imagine it must be hard to maintain the discipline to feed yourself even when you're not hungry. Do you also miss the feel and pleasure of having food? Are you the personality type that "lives to eat" or "eats to live"?

Liked by Leonard

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@colleenyoung

Great topic, Patricia. I'm bringing in fellow members @jeffk @deborahe @alpaca @puprluvr and @beanglow, who know first hand about the emotional implications of having to have a feeding tube and all that comes with that, such as the loss of socialization and food. I hope they'll share their experiences and tips for seeing the light at the end of the tunnel.

@patriciagsr, I can imagine it must be hard to maintain the discipline to feed yourself even when you're not hungry. Do you also miss the feel and pleasure of having food? Are you the personality type that "lives to eat" or "eats to live"?

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@colleenyoung it is VERY difficult to feed myself with discipline. I have a nutritionist who makes my diets so I make my blend in the mornings and know that by the end of the day all of it should have been "eaten". I dont suceed everyday (like today that I am struggling) but try to. I have swallowing therapy 2 hours per day so the therapist is working with me so I can eat again. Very difficult but she makes me taste things and try to swallow, some days better than others, but 100% of my nutrition is through the feeding tube.
My personality used to be "lives to eat sweets", now I dont have any and to be honest I feel much better without sugar.

Liked by Leonard, walisky

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@patriciagsr

@colleenyoung it is VERY difficult to feed myself with discipline. I have a nutritionist who makes my diets so I make my blend in the mornings and know that by the end of the day all of it should have been "eaten". I dont suceed everyday (like today that I am struggling) but try to. I have swallowing therapy 2 hours per day so the therapist is working with me so I can eat again. Very difficult but she makes me taste things and try to swallow, some days better than others, but 100% of my nutrition is through the feeding tube.
My personality used to be "lives to eat sweets", now I dont have any and to be honest I feel much better without sugar.

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@patriciagsr My heart goes out to you although it sounds to me as if you will be able to eat again. There is hope. I have had head and neck cancer and can eat only wet, mushy food. Yesterday I had a fit of self pity. I was hungry! But most of the time I'm grateful that I can eat anything at all. Many of my friends are tube fed or went through a long period on the peg.
No more social eating is a nightmare at first, you get used to it and for me a big frothy coffee while other people eat is my solution. I can eat some cafe food but it is messy. I had a coffee a couple of days ago with a woman who is tube fed. I had a coffee, we sat outside, we talked, someone came up and joined us with a big container of chips and offered us some. We explained why we couldn't eat them and an interesting conversation ensued. I hope this friend will one day be able to sip a coffee through a straw!
I'm very interested in your account of the formulas. I was on one for about 7 weeks and had no problem but some people hate them and would like to learn how to use an alternative.
Also interesting is what you say about sugar.
Go well. keep persevering, try to do the non-eating things you enjoy . I hope for a good outcome for you.

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@alpaca

@patriciagsr My heart goes out to you although it sounds to me as if you will be able to eat again. There is hope. I have had head and neck cancer and can eat only wet, mushy food. Yesterday I had a fit of self pity. I was hungry! But most of the time I'm grateful that I can eat anything at all. Many of my friends are tube fed or went through a long period on the peg.
No more social eating is a nightmare at first, you get used to it and for me a big frothy coffee while other people eat is my solution. I can eat some cafe food but it is messy. I had a coffee a couple of days ago with a woman who is tube fed. I had a coffee, we sat outside, we talked, someone came up and joined us with a big container of chips and offered us some. We explained why we couldn't eat them and an interesting conversation ensued. I hope this friend will one day be able to sip a coffee through a straw!
I'm very interested in your account of the formulas. I was on one for about 7 weeks and had no problem but some people hate them and would like to learn how to use an alternative.
Also interesting is what you say about sugar.
Go well. keep persevering, try to do the non-eating things you enjoy . I hope for a good outcome for you.

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Thank you very much Maureen. I have to start going out. I get so stressed that I prefer not to….all the best and thanks again for your words

Liked by Leonard

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@alpaca

@patriciagsr My heart goes out to you although it sounds to me as if you will be able to eat again. There is hope. I have had head and neck cancer and can eat only wet, mushy food. Yesterday I had a fit of self pity. I was hungry! But most of the time I'm grateful that I can eat anything at all. Many of my friends are tube fed or went through a long period on the peg.
No more social eating is a nightmare at first, you get used to it and for me a big frothy coffee while other people eat is my solution. I can eat some cafe food but it is messy. I had a coffee a couple of days ago with a woman who is tube fed. I had a coffee, we sat outside, we talked, someone came up and joined us with a big container of chips and offered us some. We explained why we couldn't eat them and an interesting conversation ensued. I hope this friend will one day be able to sip a coffee through a straw!
I'm very interested in your account of the formulas. I was on one for about 7 weeks and had no problem but some people hate them and would like to learn how to use an alternative.
Also interesting is what you say about sugar.
Go well. keep persevering, try to do the non-eating things you enjoy . I hope for a good outcome for you.

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My name is John Schrader I went thru treatment for head and neck cancer what a nightmare haven't eaten a real meal for 8 months can't taste what little I do eat I live in Brained MN absolutely no support group around Dr are limited at what suggestions to give because they don't have the answers either.

Liked by Leonard, patriciagsr

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@luckyhunterjs

My name is John Schrader I went thru treatment for head and neck cancer what a nightmare haven't eaten a real meal for 8 months can't taste what little I do eat I live in Brained MN absolutely no support group around Dr are limited at what suggestions to give because they don't have the answers either.

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@luckyhunterjs, I have no answers for you, but I want you to know my heart goes out to you. So hard to understand some of what happens in our lives. Best of luck to you. Stay strong.

Liked by Leonard, patriciagsr

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@capausz

@luckyhunterjs, I have no answers for you, but I want you to know my heart goes out to you. So hard to understand some of what happens in our lives. Best of luck to you. Stay strong.

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Thank you capausz

Liked by Leonard

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@luckyhunterjs

My name is John Schrader I went thru treatment for head and neck cancer what a nightmare haven't eaten a real meal for 8 months can't taste what little I do eat I live in Brained MN absolutely no support group around Dr are limited at what suggestions to give because they don't have the answers either.

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Hi @luckyhunterjs, welcome to Mayo Clinic Connect. It can be a challenge to not have a local support group to meet with other people going through similar things. That's why I'm especially glad that you found Connect and this welcoming online support group.

John, you'll notice that I removed your personal phone number from your message. Connect is a public forum. So we recommend that you don't share your personal contact information or use the private message function to share it securely. But I'd like to point out the benefits of sharing here in the group. By posting here like you did, you have the advantage of getting responses from different people and perspectives.

I'd also like to invite you to follow the Head & Neck Cancer group here: https://connect.mayoclinic.org/group/head-neck-cancer/
I think you'll find others going through similar experiences.

What type of cancer did you have? How long will you have the feeding tube?

Liked by Leonard

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Probably unwanted but in all the years I participated in forums I frequently gave out my information as did other members. Some people find it easier to talk one on one. Only one member here has my personal information and we enjoy talking on the phone very much. I have found through the years that usually people with more serious ailments come to these forums. There have been trouble makers but they have always been very obvious.
Jake

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This may not be too helpful in the support area but could help in the food intake area.. Following considerable radiation treatment for a tumor at the base of her tongue my wife was informed that nothing further could be done. 2 years ago she could no longer swallow, even water. She had a stomach G tube installed and for 2 years all of her intake of medicine, food and hydration were by tube. Her prescribed food was 5 250ml containers of IsoSource with fibre per day.. She would take 1 1/2 for breakfast, 1 1/2 for lunch and 2 for dinner, all by way of a gravity feed bag.. In each case water was inserted before and after feed. I usually handled preparation but she was also quite able to do it herself if I was not available. She was also still able to speak reasonably well and was able to enjoy family and friends Showering and getting everything in place was always accompanied with some eloquence. This diet allowed her to maintain her weight without any other additives. The main thing is to try and be positive about your situation.

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@luckyhunterjs

My name is John Schrader I went thru treatment for head and neck cancer what a nightmare haven't eaten a real meal for 8 months can't taste what little I do eat I live in Brained MN absolutely no support group around Dr are limited at what suggestions to give because they don't have the answers either.

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John, my husband also went through head and neck cancer, losing an eye, etc., a few years ago and is still on a feeding tube. He also cannot taste anything except salt and sugar. Has anyone ever told you why the sense of taste is gone and if it can return? He has no sense of smell because of prior sinus surgery.

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@luckyhunterjs

My name is John Schrader I went thru treatment for head and neck cancer what a nightmare haven't eaten a real meal for 8 months can't taste what little I do eat I live in Brained MN absolutely no support group around Dr are limited at what suggestions to give because they don't have the answers either.

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Hi John, I am a speech therapist in Israel. Just wanted to suggest that, if you haven't already done so, you search for speech therapists in your area who have experience in head and neck cancer. I have some experience, and have done home visits with people in your situation. Haven't always been able to help too much, but the clients seem to appreciate a good listening ear. Maybe a support group for sufferers of chronic illness, in general, would be of help? Wishing you only well.

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@motek

Hi John, I am a speech therapist in Israel. Just wanted to suggest that, if you haven't already done so, you search for speech therapists in your area who have experience in head and neck cancer. I have some experience, and have done home visits with people in your situation. Haven't always been able to help too much, but the clients seem to appreciate a good listening ear. Maybe a support group for sufferers of chronic illness, in general, would be of help? Wishing you only well.

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The term "speech therapist" can be confusing for patients. When one was suggested, we said no until months later someone finally explained that a speech therapist would work with my husband to help him swallow. The delay put him months behind and he could have been drinking the "thickened water" that she told us about. Now he can swallow some foods.

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@walisky and @motek

I so agree with what you said about speech therapists/pathologists. I have had vocal cord surgery and I understand the swallowing problems. Speech therapists can do so much to help you strengthen those muscles involved with swallowing. Speech generally improves as a by-product of the speech therapy process.

Liked by patriciagsr

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