Consider Tube Feeding

Tube feeding can be a great way to get the calories and nutrients that you or your child with cystic fibrosis need to gain and maintain a healthy weight. Far from a “last resort,” tube feeds can also relieve the stress of mealtime.

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Weight gain can increase your energy, possibly reduce exacerbations of your lung disease and allow you to have better exercise workouts to increase your endurance and strength.

If you or your child with CF are struggling to achieve or maintain a healthy weight, or if you dread mealtime, tube feeding might be the tool you need to meet your nutritional goals. Parents of children with CF often say that tube feeding removes the stress and tension at mealtimes, increases their child's weight faster and helps the family focus on better things, such as strengthening family relationships.

Remember: Tube feedings supplement eating during the day. They don't replace it.

When Should I Start Thinking About a Feeding Tube?

You may want to consider a feeding tube if you have:

Poor appetite: Your appetite can be reduced for many reasons, but when you do not have the desire to eat, your calorie intake goes down. CF lung disease may make your lungs expand and get in the way of your stomach being able to stretch after a meal; therefore eating large portions may be difficult for you.
Nausea or vomiting: If you often vomit from coughing or have severe heartburn, you may want to consider getting extra calories with a feeding tube.
Worsening lung function: You may be unable to regain weight that was lost when you were sick, or you may be trying to reach a good weight for lung transplantation.
Difficulty gaining weight: Even though you may eat a high-calorie diet, you could still have trouble gaining weight and need some help. Remember your calorie needs are 1 ½ to 2 times higher than those of people without CF, and it can be hard to eat that amount of food in one day.

For more information on the benefits of using a feeding tube, watch, “Own Your Feeding Tube With Gunnar EsiasonEpisode 2, Episode 3, Episode 4, and Episode 5.

What Kind of Tubes Are There?

Gastrostomy Tube (G-tube): The most common feeding tube is the gastrostomy tube, also called a G-tube or a percutaneous endoscopic gastrostomy (PEG) tube. It is a flexible tube that is inserted directly into the stomach through an incision in your abdomen. This allows nutrition to be delivered directly into your stomach.

“Button” G-tube: After you have healed for a few months from the G-tube placement, your doctor may recommend replacing the tube with a "button." This device is flatter and lies against the skin of your abdomen. It can be placed easily once the G-tube site is healed, usually about 8 to 12 weeks after surgery. The button can be opened for feedings or medications and closed in between. For many, the transition to a button makes tube feedings and care easier and more convenient. Some hospitals may place the button without inserting the G-tube first.

Nasogastric Tube (NG Tube): A nasogastric tube is a thin, flexible tube that goes in your nose, down your throat and into your stomach. An NG tube is the least invasive type of feeding tube because inserting it does not require a surgical incision. These tubes can be inserted each night and then taken out in the morning.  

Jejunostomy Tube (J-tube): A jejunostomy tube, also called a J-tube, is inserted through an incision in the abdomen directly into the section of your small intestine called the jejunum. It bypasses the stomach. A J-tube would be used if you cannot tolerate feedings directly into the stomach.

Gastrostomy-Jejunostomy Tube (GJ-tube): A gastrostomy-jejunostomy tube, also called a GJ-tube, is a tube that is inserted through the abdomen into the stomach and then into the jejunum, delivering the feedings directly into the small intestine.

What Goes Through the Tube?

Usually the same supplements that your health care team has prescribed for you to drink can go through the tube. You can use brand-name products and generic supplements that are found over the counter or through your home care or medical equipment company. You can also use specialized tube feeding products depending on your individual needs. Your CF care team can help you pick the tube and the supplement that is right for you.

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