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Feeding Tube

ilevin
Posts: 25
Joined: Mar 2001

I had two surgeries for tongue cancer (December and March)which was 13 years after my first tongue cancer. After my second surgery I was left with about 1/2 my tongue and was recovering to the point that I could eat soft foods pretty well.
Then I had 33 radiation treatments and the burn to my healthy tissues is one of the worst the doctors have ever seen. During the last two weeks of radiation I was hospitalized and put on TPN (nutrution through IV). Now 6 weeks after treatment the healing is still so slow that the doctors are unanimous is recommending/insisting on a feeding tube. This is something that I had hoped to avoid. Initially none of the doctors thought it would be likely that I'd need it due to my relative good health otherwise and my ability to eat prior to radiation. However this is just the latest in several examples of how nothing they have predicted in my case has turned out as expected.
I am scared about the tube. I am hesitant to have to have another general surgery - not knowing exactly what I will wake up to. I am also upset about admitting that I an not regaining my ability to eat on my own and no one is sure how long it will take.
Some of you have mentioned having tubes and that it isn't so bad overall so I'd appreciate any reassurance or suggestions (one person said to make sure it comes out above my waist line rather than right on it so I can get my pants on) I have also heard stories about tubes falling out. Is the tube painful? Up until now I was trying so hard to eat on my own but there is no way I can take in enough calories plus swallow medication etc. I'm only able to swallow a few spoonfuls at a meal and it takes a long time. After a while it burns my throat and pain radiates into my ear. I can remain on the IV but it means staying in the hospital and the doctors have given several reasons why nutrition through the gut is better. I have become more or less resigned to having to do this although I keep hoping for a miracle that I will suddenly be able to swallow.

ilene

smithd48471
Posts: 2
Joined: Jul 2001

Hi, I have been on the feeding tube for over a year know. I have to take 9 cans of ensure plus every day . I can not eat anything I have to Salvia Glands or Taste Buds left after Radiationl. They say I will be on this tube for the rest of my life.
It does not hurt when it falls out. Scary though. just put a gauze over it and go to the doctor. My biggest problem is not getting my tube shut tight. Then it leaks all over. Can be very embrazing when out in public. It took me a while to eat out in public with it. But I decided if I wanted the fellowship with other people I had to do it., Dave

snwflk
Posts: 16
Joined: Nov 2000

Ah jeez, ilene, this really sucks.

The only problem I had with my tube was the inability to sleep on my stomach. There are different 'tube' types so this may not be a problem for you.

I wish I could offer more comforting thoughts other than the fact that I wish I could be there for you when you feel like beating the crap out of your radiation oncologist. I'd help.

dkeats
Posts: 11
Joined: Oct 2000

Hi Ilene,
Reading your post makes me think back to when they wanted to put a feeding tube in for me. I resisted but they told me they wouldn't begin treatments unless I had it done becuase they knew that I would not be able to keep up my nutrition otherwise. It was the best thing I could have done and I am sure I would not have survived without it. I was treated for a recurrance of salivary gland cancer that had gone to my lymph nodes. Had neck dissection both sides (one a radical) and 8 weeks of twice a day radiation and around the clock chemo. I kept my feedtube for 5 months. It was a little uncomfortable when they first put it in because they went thru my stomach for installation instead of down the throat. It was somewhat sore for about two weeks cause you use the muscles they go thru to get up and down but it's really not bad...I'm a big baby and survived it! Biggest problem is figuring out how to "store" it while you're not using it. I know there are some that disconnect at the insertion site but mine was one long tube (about 10") that was permanently attached you I just coiled it up like a snake and taped it to my belly. The location suggestion was a good one...mine was low enough that clothes didn't bother it. Another post mentioned leaking. That was sometimes a problem so if I was going out, I taped the plug so it didn't wiggle loose. I went for a long time and didn't go out to eat with other people but decided that I could suffer a couple of stares to be able to "eat" with my friends, so I just took my cans of food and a syringe for flushing and got to the point where I could do it right at the table with them without a problem. I probably had the tube taken out too soon because I had trouble maintaining my weight for a couple of months. I still can't eat very many things and I have to drink water with every bite. I didn't realize how easy the feeding tube was until I had to force myself to eat real food. My taste is gone, my mouth is dry and my throat has constricted to the point of gaging me if I take anything other than a small bite. It sounds to me that your body has been though enough and you owe it to yourself to get the tube. It will make your whole life much easier once you get it down to a routine. And one other plus...I had the most beautiful fingernails the whole time I was on the tube...there's some good stuff in there!
Good luck and don't be afraid.
Marilyn

JB150
Posts: 4
Joined: Feb 2003

Hi I have had my feeding tube for a year 1 1/2 years now and do very well. I am not able to swallow anything. I use a product prescribed by the doctor for nutrition and all but one of my medications can be filled in liquid form. I have adjusted to this pretty well. If you need to talk or ask any questions here is my e mail address jbtwelvefan@aol.com

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