Please help me understand how one survives on a feeding tube for the rest of your life I am 58 and very down. I had squamous cell head & neck cancer with chemo and radiation it took it;s toll. I cannot eat by mounth How does one travel for business or vacatioon with all the supplies needed just to stay alive I would love to talk to someone on the phone too 847-274-8043 jim w

Hi Jim

It's not easy, but certainly not an insurmountable problem. I had to travel while still fully dependent on my PEG tube. One trip was easy since we went by auto, just packed several cases in the truck and went on our merry way. Traveling by air was a little more challenging. I packed some (up to the weight limit) in my checked baggage, what I needed to get by that day in my carry-on, and shipped a couple of cases to the place we were staying by UPS.

Takes more advanced planning, but I did it and did fine.

Kevin

Are you off the tube now mine looks like it will be with me for the duration of my days? Do the exercises help?

I am off of the tube now. Still have some food that do not cooperate but those are getting fewer and farther between.

I threw so much stuff at it, exercises, acupuncture, and chiropractic care that I can not say if any one of these helped more than the other. Net result, I am doing ok so far!

Kevin

Jim, I am hoping I won't be on the g tube for the rest of my days but I have been on it for over two years, have flown on a couple of business trips in that time (but before the most recent regualtions about liquid carryon stuff) and have taken lots of trips via car.

This website has a lot of helpful information:

http://www.oley.org/lifeline/95-041.html

Nelie

You may have some problems travelling with your nutritional liquids. We were interviewed about a year ago for a newspaper article about this problems and the reporter said that TSA wasn't being very helpful or understanding on this issue (he had spoken to them directly). If you go to the TSA web site they do have a description of what may be carried aboard, and "medically necessary" liquids are allowed.

It might be worth calling and getting guidance but it appears you need to turn these materials in to be screened at check-in, that is, not when you go through security. You should have a letter from your oncologist (on letterhead) saying that you receive all your nutrition and hydration by gastric feeding tube and that the amount of nutritional fluids taken aboard are medically necessary for the duration of the flight (or something to that effect.)

Re exercises etc., assume you have been to swallowing therapist etc. and this has not helped. (I ask because, amazingly, some hospitals still do not include this as part of their standard operating procedures for head/neck cancer patients.) Have also heard that acupuncture has helped some. Is it a matter of saliva or a matter of damage to your swallowing mechanism?

Gail

That Oley.org website actually has a form you can print out and fill in with help from your doctor to use when you fly. I agree it also helps to have a letter on letterhead. The TSA website has changed quite a bit since that newspapaer article in terms of now explicitly saying you can take aboard medically necessary liquids.

And of course, if you have a g tube sticking out of your stomach that's also pretty good "evidence" that you need those liquids. I worry more about what will happen to me if they pull the tube but I still take all my nutrition orally in liquids (so will still need to carry aboard Boost or Ensure or something).

Nelie

So Nellie as I understand you have a tube but do not use it as you drink all your liquids at this point? Why have they not removed your G tube? Thanks for all the information. Would you be willing to talk via phone my number is 312-421-6132 or I will call you if you give me a number.

Gail very helpful info I have been doing exercises from a swallowing therapist just got asome new ones last week. I will look into accupuncture too. Thanks.

Jim, I am working towards drinking everything right now. It's a slow process for me partly because I wasn't able to swallow much for a long time because of strictures in my esophaugus. It takes a lot of time each day and often I just don't have the time. So on any given day I get between 50% and 100% of my nurition orally. I also have issues because I can't swallow pills and I am, taking medication (including tamoxifen to prevent a recurrence of breast cancer) that I now grind up and flush through the tube.

Actually, my MO just prescribed me a new form of liquid Tamoxifen to see if I could use that. However, it's in an alcohol solution and it completely set my mouth on fire when I tried drinking it. So that doesn't work too well.

So anyway, they aren't going to remove the tube until they and I are abolsutely totally sure that I can get adequate nutrition each and every day without it. And to me, adequate nutrition is not 4 cans of Carnation VHC, though I don't mind using some of that sort of thing every day, I want to be able to have adequate amounts of fruit and veggies every day, and fiber, and protein, and it's just hard putting it all together right now. My mouth is also still very sensitive and usually quite sore by the end of the day so there's a fair amount of stuff I cn't eat because it stings or burns.

Which is why I hope you won't take this the wrong way but talking on the phone, after a full day of talking (I am advising entering students right now at work) is pretty hard for me right now. If you want to send me a private message, though, please feel free. I am quite busy at work right now, though, as well as I have a relative not ding too well in the hospital so if I don't answer right away that's why.

Also, if I were you, I would not post my phone number anywhere that's a public site on the internet. You might want to erase that post up there.

Nelie