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How do I know when I can get off my feeding tube?

Head & Neck Cancer | Last Active: Jun 11 7:51am | Replies (26)

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@johnbonani

Hi @jg99t9 As William said, each case is different. For me, I was apprehensive about removing the feeding tube concerned that I would not be able to get enough calories by mouth but at my doctors recomendation I had it removed at four months post treatment. At that time the pain was slightly better but by no means gone and I still had severe dry mouth. What I did was to find something that I could swallow, in my case vegetable filled dumplings in a mild chicken broth. I'd buy bags of these things at the supermarket and literally lived on them for months until I gradually could introduce different foods into the mix. I still have one bag left but refuse to eat it or get rid of it as it reminds me of what I went through. Weird I know.

Today, one year out I can eat most foods not all but have to wash down each bite with water and my water bottle is with me 24/7. But I feel that's a small price to pay all things considered. As others have mentioned I use Xylimelts nightly. They really work and I found many similar products did not. Just one in my mouth at bedtime has helped tremendously with dry mouth at night. Water bottle every waking hour and Xylimelts when sleeping. That's been my routine.

Stay strong. Seems like it takes forever I know but it will get better and there is quality life after your journey is over. All the best.

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Replies to "Hi @jg99t9 As William said, each case is different. For me, I was apprehensive about removing..."

Thanks John,
I will try to introduce some more foods and I will try the Xylimelts. My ENT tells me that a lot of the time it takes a minimum of 1 year before you feel comfortable enough to eat substantially.
Thanks again,
Al