Living Well with Your Feeding Tube

Tips for normal living

 

So how is it to have a peg tube? When you reveal that you use a feeding tube, expect a visible reaction and perhaps a step backward. Are people repulsed by feeding tubes because they associate the tube with the terminal patient? Does the tube remind them of their own mortality? Of being bedridden and unable to eat normally?

 

That you can have a full life while using a feeding tube seems an oxymoron. But once you make peace with the tube, you’ll discover that life, though compromised, is still rich. What follows are tips to help you make peace with the peg.

 

#1: for me the tube has never been comfortable. The question is how much discomfort can I endure before seeking medical care. A feeding tube tends to abrade the opening it enters with each movement you make. On busy days the tube may cause the area around it to become inflamed and extraordinarily tender. Because my original tube was about a foot long, it always needed support. I taped the tube to my body with medical paper tape which pulls off painlessly and is readily available at Walmart. I also tucked the end of the tube under the bottom center of my bra. That way it didn’t show through my clothes, most of the time.

 

#2: the tube is going to get in the way of your activities. You must learn to sleep on your back or side. And should you forget, the tube will remind you immediately with a little shock of pain at the surgical site. This site never quite heals, unlike other body piercings. Should you remove the tube, however, the site will heal over within approximately thirty-six hours.

 

#3: your love life will be less spontaneous. Direct, passionate, upper body contact with your lover is impossible because of pressure on the tube. If you’re determined enough, it’s fun to investigate a variety of “work arounds.” I hope your significant other comes from the same mold as mine. If mine is the least bit repulsed by me or the tube, he has never shown it. He is the embodiment of tenderness, concern, and patience. He could have opted for anger or bitterness, considering we had been married only six months when I was diagnosed with this life altering disease.

 

#4: travel is different. You have to pack a “feed bag” Mine contains two or three cans of food, a glass to pour it in, my removable tube from my new “sports model” called a mickey button, a syringe, a towel, a bottle of water, and a small funnel to flush water through the tube when finished. You can learn to feed yourself discreetly if someone else is driving. Or you can stop in a secluded place.

 

If you are flying, I recommend getting a note from your doctor about your feeding tube. In January I flew to Las Vegas. On the way, a TSA agent congratulated me on having “done everything right” when I presented my hand signed medical excuse on an Rx paper to explain the cans, the bottled water, and the fact that my body on an x-ray looks like I’m wired up as a bomb.

 

Your feeding tube is never going to become your friend. I resent mine and yearn for the day that I can eat again. But to those who offer unsolicited sympathy, I say “I choose to eat from a can rather than eat dirt.” Some walk away puzzled; others get it. Eating dirt is a euphemism for being dead, and as long as I’m eating from a tube and I can still dance, what do I have to complain about. I’ve never lost a child, nor a limb, nor a breast. I just have a little different approach to dinner.