How Long Wearing Feeding Tubes?

I have read posts where some people have had their feeding tubes in for 5 mos. or longer, one was 8 mos. Since radiation therapy is only approx. one month. Does it really take 4 - 7 mos. after radiation before people can eat?

-Just wondering what I have to look forward to as time goes by.

Thanks

My Husband used the tube all the way through his treatment. In the last week of treatment and the two weeks following, he could only swallow a little water. He started eating ice cream or other very soft food about 6 wks after his radiation ended. By the third month after treatment, he was not using the tube at all and had it removed soon after. All the way through treatment, no matter how bad it was, he swallowed water at least, through out the day. That was one of his goals – to keep swallowing no matter what. I think the taste of food and mucus was worse than pain for him. His head and neck sur. told him that most of the people he’s treated get their tubes out between 5 – 7 months after treatment ends. As bad as the tube looks, it saved his life and I am convinced allowed him to get enough nutrients to finish his treatments.

I had mine for 5 months. I hadn't swallowed anything for about 2 months so I kind of lost the swallowing reflex. I taught myself how to swallow again but it was tough. What made it so tough was the lack of saliva and the fact that the radiation actually changed my physiology somewhat. I went for a swallow test and they discovered that my throat had closed to a smaller diameter. It was, and still is, difficult to get food down that isn't chewed to a liquid state. Every bite is also accompanied by a sip of water to help lubricate it. It took me a while to develop the technique so the PEG supplemented my diet until I could get enough calories without it. It's different for everybody. Some lucky folks have been able to go through their whole treatment without one although I can't even imagine that.

The day it comes out will be a happy day for you. It'll be like a graduation, as if you are leaving a trying part of your life behind. And you will be. Mine, embarrassingly enough, came out on its own in a laundromat. After I had carried a basket of clothes in and set them down I went out to park my car. My wife came running out and threw it on the floor of the car saying, "Look what I found". It didn't register in my head at first and I thought to myself that it looked like a feeding tube. Then it dawned on me that my PEG had decided to make an unplanned exit. My poor wife had to pick it up off the ground in front of the horrified launderers and carry it out of the laundromat. Her first thought was, "What if it isn't his". We both sat in the car and laughed for a while after that. Luckily I wasn't really using it by then.

Anyway, even though your life depends on the PEG when you're using it, it's one device you won't miss when it's gone.

Joe 

I had mine for about 4 months, and actually used it for about  2 1/2 months. I had 7 weeks of radiation, and started using the tube after about 3 weeks ( my oncologist insisted I have the tube put in before starting rad.).

Everyone is different, not only in how much radiation they get, but in how they react to it and recover from it. Just make sure you swallow a little bit each day so your body "forgets" how to. Just keep a glass of water ( orange or mango gatorade worked better for me) handy to sip on throughout the day and you'lll be fine.

Best of luck with your treatments....

Mike

Joe, great story, I got a good chuckle out of it!

Mike

I had mine for 4 months. I made the mistake of not having one put in before treatment started. I thought I could "tough it out". Huge error on my part. After two weeks I was begging for one. I had mine removed 3 months, to the day, after the end of radiation.  At that time I was only able to drink a small amount of liquid each day. I had to force 2000 calories of Ensure down my throat each day.

As an earlier posted said, force your self to drink a little water each day. I did and retained most my ability to swallow.  Of course I was on enough pain meds to drop a horse :)

Oh, and don't laugh or cough when you've got the end of the tube open. On a couple of occasions I shot stomach contents out of my tube, about 20 feet. It was a mess to clean up, but funny as hell looking back on things. There's a small stain on the wall. When I see it, I smile. Don't ask why, but I think it's because at the time I was sure I'd never feel normal again.

Keep your chin up. You'll get through this.

Tom

You had the feeding tube for 3 mos. after radiation ended? You couldn't eat for 3 mos. after radiation? Wow, I guess I'm living a pipe dream. I just had my 13 treatment today and so far I'm still able to eat (modified) and drink water. Haven't lost any weight.

So, the worst is yet to come? I can look forward to a feeding tube for 3 mos. after radiation.

Great!!

I had my PEG put in 2/28 (2007)and started TX 3/05. Done 4/24 but didn't have the tube removed until 7/10. and that was too early! (didn't know then about the dissection 8/4) Due to my (lack of) taste issues, couldn't really make myself eat anything of substance for mos. Lived on Ensure & smoothies. I had always drank water, tho, so no loss of swallowing. Now, 9 mos later, the taste thing is still a big problem even tho I seem to be in the minority. Also-no saliva (yet?!) so eating is hard, a frustration and not enjoyable. I've lost 60#'s to date but I am healthy & recovering very well. A note-since I had an unknown primary w/mets to lymph nodes-they radiated a bigger field than if they could have focused on an area. I was warned it would be very tough and of the probable side effects. My Dr's were very honest. No one knows what'll it be like for THEM until they go thru it-that's the interesting thing about this board-so many different stories and experiences! Gayle

Thanks for sharing. Sounds like your radiation was much worse than mine. They are only radiating one side. It's weird, there is like a redline on the roof of my mouth dividing the sides. The right side is fine, the left side is all white and beat up. Since they found the primary and only source of my cancer was inside the left tonsil, they can be very specific in where to shoot. Since it is an IMRT machine, they are able to pinpoint where to blast away. To date I just feel like I have a bad case of tonsillitis type pain. I'm able to drink water no problem and eat soft foods, haven't lost taste yet. I've only lost 5 lbs. (after 13 treatments) and that is because I gave up my daily beer.

So, I'm hoping to skate by w/o the tube. If I don't get much worse than I am today. I can make it. But, I have 20 more treatments. We'll see??

Rick

I'm afraid I received bad counsel, as I still have the tube and have been unable to drink or eat anything since the 3rd week of radiation back in April 2007 (it is now January 24, 2008). Someone should have told me to force myself to swallow, even if it hurt (which it did back then). I am now going through swallow therapy to relearn swallowing technique and to build up some of the 26 muscles that are required in the course of swallowing. Now I am quite depressed and not too optimistic, but I keep on keepin' on. I have another swallow test in a week or so. 

I repeat though: Keep on swallowing through your radiation treatment and during recovery. If necessary get some of that lidocane stuff for your mouth and throat. I tried it, and it so deadened my mouth and throat that I thought it was ineffective as I couldn't taste anything. The point is, don't strive for taste; strive to keep your swallow. You'll lose it without using it.