They call themselves “tubies” — people with certain medical conditions who accept long-term feeding tubes as the best or only way to nourish themselves. With the feeding tube in place, many resume school, work and social lives once threatened by severe weight loss and malnutrition. For them, getting a feeding tube means getting their active lives back.
Between 150,000 and 300,000 Americans have long-term feeding tubes, says Lisa Epp, a registered dietitian nutritionist with Mayo Clinic in Rochester, Minnesota. Not being able to swallow food because of cancer of the mouth or throat is a major contributor.
Neurologic conditions such as stroke or amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) that impair nerves affecting swallowing are also reasons. Gastric problems in which the stomach doesn’t empty well or a part of the intestine doesn’t work are the third major cause for feeding tubes, Epp says. Less commonly, trauma and paralysis impair the ability to swallow.
In kids, genetic and other disorders that affect their development can compromise their ability to swallow and eat.
[See: 5 Rare Diseases You’ve Never Heard Of (Until Now).]
Initial Resistance
Gunnar Esiason, a cystic fibrosis advocate, program director with the Boomer Esiason Foundation and author of the Own It blog, had his feeding tube placed in 2011 after his sophomore college year. Many people with cystic fibrosis struggle to maintain their body weight, and Esiason was no exception. “I remember being younger and being told to eat four huge meals every day,” he says. “With shakes, with snacks; all this stuff.”
As an avid football and hockey athlete, he felt violent sports weren’t conducive to having a feeding tube and held out as long as he could. (People with feeding tubes can participate in any activity, he later learned.)
Esiason, whose father is retired quarterback Boomer Esiason of National Football League fame, has a relatively large frame for someone with cystic fibrosis. As much as he ate, his body couldn’t fully absorb the calories, protein and other nutrients it needed to thrive. Still, he pushed back against the idea of a feeding tube.
“I do think there’s a stigma attached,” he says. “I do believe when people hear the words ‘feeding tube’ or hear about the device of the feeding tube, they immediately think ‘starving, malnourished person.’ And at least with people with cystic fibrosis, that’s not always the case.”
Feeding-Tube Options
A gastrostomy tube, or G-tube, is often the choice for people who need longer-term feeding tubes. Surgeons use an endoscope to place the G-tube directly into the stomach. The surgery creates a stoma, a visible opening that connects to the feeding tube outside the body. The feeding tube allows people to take specialized liquid nutrition directly into their stomach.
People use a variety of methods to deliver their food, water and medicines. Bolus feedings — larger feedings spread throughout the day like regular meals — can be given with a large syringe. Using a bag connected by tubing to the G-tube allows food to flow into the stomach by gravity. Continuous feedings through a pump give a slow, steady feeding over a period of many hours.
Tipping Points
When children are barely able to eat because of chronic illness, feeding tubes must be considered, Epp says. If children can’t have needed surgery or chemotherapy because their bodies are weakened by malnutrition, parents have to make that difficult choice.
For adult patients who are feeding tube candidates, guidelines exist around certain diseases. With cystic fibrosis, for instance, Epp says, if men keep their body mass index above 23 and women keep BMI about 21, they have fewer hospitalizations because of lung infections and a better prognosis.
“When I did get the feeding tube, it was a direct result of having pancreatitis and losing a ton of weight,” Esiason says. “It was evident to me, my family and my doctors that something was going to have to change in order to continue to live the sort of lifestyle I want to live,” he says.
[See: Dos and Don’ts of Home Medical Devices.]
Early Adjustment
Coming home with a tube in your stomach, a different way of eating, a slew of medical supplies and a new set of responsibilities seems overwhelming.
For the six to eight weeks while his surgical wound healed, Esiason says, he was “definitely unhappy” to have the feeding tube protruding from his belly. He was adamant that doctors eventually replace the outward tube with a button, which caps off direct access to the stoma.
However, buttons aren’t the best option for everyone, Epp says. For instance, people who stay on a pump with continuous feeding throughout the day often prefer a tube, which can feel more secure.
Sleeping while attached to a continuous feeding pump takes adaptation. “I used to be a stomach sleeper, or sleep on one side compared to the other,” Esiason says. “So I had to teach myself how to sleep on my back and sleep on a different side, facing the tube and the pump.”
Tube-Feeding Foodies
Just as consumers of traditional food want more natural, less-processed options, a similar movement is afoot among feeding tube users. Cost poses a significant barrier, however. “A lot of the products on the market that are paid for by insurance cost about $1 a serving or $2 a serving,” Epp says. “Some of the newer [products], which are very well-marketed, or natural, organic whole-food options, can be closer to $8 per serving.”
Blending food at home is gaining popularity among people with feeding tubes, she says. “Looking at nutrition products that come in a can, people think, ‘I don’t want this. I want fruits and vegetables and things my family is making.'”
Change for the Better
Gunnar Esiason still eats regular food when he wants — but now the pressure’s off. His aim is to consume about 5,000 daily calories, starting with a high-calorie, high-protein, high-fat shake through a bolus feeding and other meals during the day. While he sleeps, his feeding pump does the rest.
Esiason doesn’t hesitate to make social plans or take an occasional night off. “I’m definitely flexible after quite a few years of hard work to get my weight to a safe, comfortable level,” he says. His series of blog posts and videos offer an insider’s view of feeding tubes.
[See: 10 Lessons From Empowered Patients.]
Epp has a message for parents of kids who need feeding tubes: “Getting better nutrition is going to help them be stronger, increase their immune system and help children grow to their potential, whatever that potential can be.” As for adult patients, she says, “The No. 1 thing I hear when people come back at six-week and three-month visits is, ‘Why didn’t I do this sooner?'”
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Life With a Feeding Tube originally appeared on usnews.com
