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

@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.

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@douger

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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Hello, i was prescribed with Isosource 1,5 with fiber too but it was not processed in my body well and 6/10 I vomited and 10/10 times I was nauseous. I ended up replacing it by a home blended diet. How does your wife react to Isosource ?

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Hi – no she never did experience any extreme reaction from IsoSource so it appears each body probably reacts differently. She always said she never felt hungry at any time but recognized the need to nourish the body.

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@patriciagsr and @luckyhunterjs, I wanted to reach out and see how you are both doing?

Patricia, how are you managing with the feeding tube and finding the right diet? And how about the emotional toll? Are you able to consider ways to reduce the social isolation and be with people more?

John, how is the swallowing coming along and working with the speech/swallow therapist?

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@colleenyoung

@patriciagsr and @luckyhunterjs, I wanted to reach out and see how you are both doing?

Patricia, how are you managing with the feeding tube and finding the right diet? And how about the emotional toll? Are you able to consider ways to reduce the social isolation and be with people more?

John, how is the swallowing coming along and working with the speech/swallow therapist?

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Hi Colleen, The swallowing seems to be doing better and I believe by working with a speech/ swallow therapist has been a help.

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The formula , Jevity , is a death sentence, I make my own food , with every healthy ingredient you can think of , and add about two Jevity per day to it , I am eating healthier than ever , I eat a lot of fiber , and and I feel about 85 % of my old self .

Yes , do not rely on Jevity , etc , 54% of calories from corn syrup !

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