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Emotional implications of having a feeding tube
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
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Glad l saw this! I am having a stomach feeding placed this week, April 30th 2026. I’ve been told everything will be explained to me day of installation but l didn’t want to wait to the last minute to get answers so l went to Web. Md. sorry you are having such difficulty. I will take your issues and bring them up with radiology intervention doctor or nurse. Especially your issue of vomiting and gerd. I had non B cell lymphoma 2 1/2years ago and the chemo and radiation has limited my swallowing. It takes an hour and half to finish a meal and my weight is still low. Hence the feeding tube. I’ll post something after l have the procedure. Hope you find answers as well. God bless you.
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1 ReactionHello I am 2 years post chemo and radiation for basenof tongue C.
It has been a long road to recovery. I could jotbeat for the first 3 months l so a feeding tube was inserted. I started with using Boost 224 for nutritional support 3x per day. I then decided to just cook a meal and using my Ninja, blend it. I do regular foods as if I were sitting down to dinner. I felling give me more than Boost as I am heavy on the veggies and lean clean protein. Make sure they are blended well or ot will clog the syringe.
I do a full dinner this way.
As for breakfast and lunches..I try to eat small amounts. However, a lack of saliva and swallowing issues from.the radiation, I need to chew chew chew amd chase with water for it to go down. It is not enjoyable and I have almost zero taste buds so can be frustrating.
So over time if you keep trying and really push, you will be able tk eat again.
So what I am trying to say is, it gets better over time. I still have some Gerd after certain foods.
I also learned that if you go slowly with the feed, it is less vomiting.
Just wanted to share my experience. Good luck all!