Living With a Feeding Tube

After 5+ years of chronic diarrhea, my body was malnourished. I’d lost interest in eating because the less I ate, the less mess I had to clean up. But then one of my doctors discovered that my left lung had been destroyed by Valley Fever, and had to be removed. The surgeon said I wouldn’t survive the surgery unless I gained some weight, so I was put on Total Parenteral Nutrition, TPN, which is intravenous feeding. It was administered from a bag containing all the nutrients I needed through tubing attached to a catheter in my subclavian vein. Every night I connected a tube to my catheter, which was attached to a bag that held 1000ml of TPN formula. As I slept the fluid was infused by a pump that sat next to my bed. In three months I’d gained 10 pounds and was ok for the lung surgery.

I survived the surgery and learned to live with one lung, but still had diarrhea, so I stayed on the TPN for 4 more years. I would have stayed on it longer, but got really sick from sepsis and the catheter had to be removed. At that point, my doctors thought it would be less risky for me to get a feeding tube put in my stomach. This would also give my stomach and intestines a chance to work again.

So, I got my G-tube, a 5” long rubber tube that sticks out from my stomach and attaches to a bag of formula, which I infuse day and night with a pump, like the TPN pump. The tube is secured in my stomach with 1” inflatable balloon. This keeps it from coming out.

I’ve been on the G-tube for three years now, and although I sometimes resent all prep and procedures, it’s keeping me alive. I carry a 500ml bag and pump in a small back pack, and appear pretty normal except for the thin tube that comes out from the neck of my shirt and attaches to the pack.

The reactions I get about the tube from people who don’t know me are varied. To many I’m sure it looks like a wire connected to a cell phone or MP3 player. Some people get curious looks on their faces, and I can tell they suspect it’s something medical, but don’t say anything. The reaction I appreciate the most is when a person politely asks if I’m on a feeding tube. Then they tell me the story of how their mother is on one, but won’t leave the house. The commend me for being out in the world with my little back pack, living in spite of it. One man told me the story of his nine-year-old daughter, who’d been on a tube since age three. He said it’s amazing how kids adapt to their circumstances and don’t feel sorry for themselves. I need to hear things like this to keep myself adaptable.


What is tube feeding?

Tube feeding is a liquid food mixture given through a tube when a person is not able to take in enough nutrition to meet their body’s needs. It is also called enteral nutrition.

Tube feeding may be temporary or permanent. Some people need tube feeding while they are getting better during an illness. Other people may need to have tube feedings for the rest of their lives.

Why tube feeding?

If a person cannot eat in the usual way and is not getting enough nutrition for good health.

It is used for people who cannot swallow safely due to a disease or injury to the mouth or throat, like cancer or a stroke.

It is also used for people who are getting medical treatment, like chemo or radiation therapy, or an illness that makes it hard to eat enough food.

How does a person receive tube feeding?

One can take bolus feedings, which is large formula doses several times a day, similar to eating at mealtimes. The formula is then pushed through the tube by a pump or a syringe.

There are also continuous feedings, where the formula steadily is steadily infused with a pump in small amounts over several hours or all the time.

types of tubes

  • Nasogastric tubes: This tube is inserted into the nose or mouth and gently push it down into the stomach or past the stomach to the small intestine. Nasogastric tubes may be used when tube feeding is needed for only a short time (days or weeks).
  • Gastrostomy tubes: For this type of tube feeding, one is given an anesthetic so they do not feel the pain during placement. The doctor inserts a feeding tube into the stomach through an incision in the belly. A balloon or rubber cap keeps the tube in place in the stomach. Gastrostomy tubes are used when tube feeding is needed for months or more. They are more comfortable than nasogastric tubes.