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My Feeding Tube Experience (or "Wishing I’d Gotten It Sooner”)
I have had a G-tube since October 2013. It was something I was very reluctant to do. I was "Mr. Macho” and I was only sixty-seven years old—way too young to have a feeding tube. I thought only eighty- and ninety-year-old people on their deathbeds in nursing homes had feeding tubes.
Getting a G-tubeI had tongue and throat cancer in 2005 and endured seven weeks of radiation treatments twice each day, along with three chemo sessions. I was declared cancer free and everything was fine for a few years, until I started developing numbness in my lower lip and tongue. My throat doctor thought I might have had a minor stroke so he ordered tests. It was determined that I had nerve damage from the radiation.
My ability to swallow was also diminishing. It began to take me longer and longer to complete a meal, so my doctor referred me to the local medical school for evaluation and therapy. I was given a swallowing test in January 2013 and failed it. After a few more months of therapy I was given a second swallowing test in May. I failed that one so miserably that they stopped the test after just a few minutes; I was aspirating badly. They still could not convince me, Mr. Macho, I needed a feeding tube, so I continued on through the summer eating more and more slowly and coughing and gagging for an hour or so after each meal.
Finally, in September 2013, I came to my senses. I told my doctor I was ready to get a feeding tube. In October, my life made a definite change for the better. The day after I got my G-tube I was a new person. I told my son, who is a paramedic, I should have had a G-tube put in a year or two before, as it made my life so much more tolerable. No more choking and coughing! Wow, that is a great feeling.
Life with a Tube
Does a feeding tube change your lifestyle? Yes, it changes it as much as you allow it to. My wife and I still go out to eat with friends. I just tube feed before we leave home and then go along to enjoy the social interaction. All our friends know I am a tube feeder, so it is not a problem.
I even try to have a little fun with my inability to eat. A friend and fellow tube-feeder whom I met through the Oley Foundation–Inspire forum told me a few things he has tried at restaurants, and I have enjoyed using them to lighten up a situation. Just a few days ago my wife and I went to a steak restaurant with about a dozen friends. The waitress was taking everyone’s orders. After she got my wife’s order for a nice steak, she turned to me and politely said, "And sir, what would you like to order?” I put on my "sad” eyes and looked up at the waitress and said, "Ma’am, we can only afford for one of us to eat each night, and tonight is my wife’s night.” You should have seen the look on the waitress’s face. Of course I quickly told her why I would not be ordering and she got a good laugh about the trick, as did all of our friends. I have found that putting a little levity into the situation makes being a tube feeder much more tolerable.
There have even been a few situations where we have been on road trips with friends and have gone to restaurants that were not crowded, where we were able to get a corner booth so I could tube feed right in the restaurant. Whenever I do this, I go in the restroom to hook up my bolus connector tube and syringe, and to close the shutoff valve. I leave it all inside my shirt until I sit down at the table with my back towards the serving area, so only my friends can see my tube.
This has worked well with no problems, as the world we live in is now much different than it used to be. When I was younger, I could not imagine a mother breastfeeding her baby in public, but now that that is widely accepted, I can’t see any difference in us tube feeding in public, as long as we are discreet about it.
I am sitting at our breakfast bar as I type this and I am hooked up to my feeding tube having my breakfast. Always a do-it-yourselfer, I’ve taken an old microphone stand and adapted it so it will hold my 5 oz. syringe, which I use while I gravity feed via a 12-inch-long bolus connector tube that I connect to my feeding tube.
We still travel some so I made a syringe holder for use in our car, and I also made an attachment for it to hold my syringe while feeding in a motel room. I have difficulty lifting my arms above my head for long periods of time, also due to the radiation damage.
I carry a complete feeding kit in my car trunk at all times as you never know when you might be away from the house when meal time arrives. I use a small black leather bag about the size of a woman’s make-up bag to carry my syringe, bolus connector, two or four cartons of formula, a bottle of water, my cleaning brushes, etc. I used it just the day before yesterday in the car while my wife was in the beauty shop.
Replacing a Tube
My first G-tube pulled out of my stomach about four months after I got it. Being a newbie, I went to my doctor’s office. She was not there, and I was sent to the emergency department to have it replaced. Six months later the balloon on tube #2 broke, and the whole tube came out. It was late on a Friday. I told my wife I wasn’t going to go sit in the ED all night.
I removed the remnants of the broken balloon, washed my old tube thoroughly, put a dab of K-Y Jelly on my stoma and on the end of the tube, and reinserted the old tube myself.* I taped it to my belly so it would not fall back out, since it had no balloon to hold it in place. The next morning I called the home health care duty nurse and she brought me a new tube; she allowed me to remove and replace the old one myself. I now have an extra feeding tube, which I carry with me any time we travel.
In closing I will say that having a G-tube is not really a big problem for me and the biggest regret I have is waiting sooooo long to take my doctor’s advice to get one. If your doctor tells you to get a tube, I strongly recommend that you listen to him or her and not be stubborn like I was. You, too, will be saying, "Why didn’t I do this sooner?”
My First Oley Conference
Last year I was a first-time attendee at the Annual Oley Foundation Conference, which was held in Orlando, Florida. I had a wonderful time. When I signed up to go I had no idea what to expect. I was really impressed with the knowledge, dedication, and professionalism of the Oley staff and the medical professionals who conducted the seminars/workshops. One thing that really impressed me was the chance to ask questions that related directly to my tube feeding in an open forum and also on a one-to-one basis with some of the nation’s top medical personnel.
I was shocked to see the wide array of attendees with varying degrees of feeding difficulties. There were little kids and people of every age—all the way to senior citizens—present. I came away feeling truly blessed to have only my G-tube and learned a lot about the other nutrition support methods, like parenteral nutrition, J-tubes, and GJ- tubes, of which I previously had had no knowledge.
This year the Oley Foundation Annual Conference will be held in Saratoga Springs, New York, from June 29 to July 3, and I strongly encourage you to attend. You will gain so much information that can improve your quality of life. There will be a large number of medical product specialists who will have educational displays of the various products and services that they offer.
An added bonus for attendees is that you will have the opportunity to meet many of the people you see posting on the Oley-Inspire forum. It is always great to put a face to a name. The conferences are always well planned and offer something for everyone with any sort of nutritional issue.
*Editor’s note: Please have a discussion with your health care provider, before the situation arises, about what he or she would like you to do if your tube comes out. Ask them if they will show you the proper way to reinsert your tube, if you feel you would be comfortable doing it. If you have a J-tube, or a GJ-tube, you should not try to reinsert it on your own.
This article, slightly revised, also appeared in the SPONHC newsletter.
LifelineLetter, May/June 2015