When to Consider a Feeding Tube for Cystic Fibrosis Weight Loss

People with cystic fibrosis (CF) often require more calories per day than those without the disease and commonly have problems with digestion and absorption of nutrients. Malnutrition (lack of proper nutrition) is a common complication of the condition and can lead to weight loss, poorer outcomes, and a reduced quality of life.

While some people with CF can address their nutritional needs with medications such as pancreatic enzyme supplements, others may require a feeding tube. Feeding tubes are a common treatment for malnutrition and can lead to necessary weight gain, improved quality of life, and better lung function.

Cystic fibrosis (CF) is a genetic condition that affects the glands that produce mucus and sweat. Mucus is a slippery substance that helps to protect the organs and linings of the lungs and digestive tract.

In CF, the mucus produced is thick and sticky. It can build up in the body, leading to complications such as damaged lungs or blocked intestines.

In this article you will learn how CF affects the digestive system, how a feeding tube can help with nutrient deficiencies and malnutrition, and how to live with a feeding tube.

Cystic Fibrosis and Appetite 

People with cystic fibrosis often have a poor appetite. This lack of hunger or wanting to eat can be caused by nausea associated with swallowing extra mucus produced in the lungs, infection in the airways, or side effects of medications. It can lead to weight loss and malnutrition.

Effect on Pancreas 

The pancreas is also commonly affected by CF and can cause problems with digestion. The pancreas is responsible for releasing enzymes that help the body break down food into absorbable nutrients. The pancreas does not secrete enough of these enzymes in CF, leading to malabsorption (difficulty absorbing nutrients from food) and malnutrition.

Common Nutrient Deficiencies

Poor appetite and an improperly functioning pancreas can lead to nutrient deficiencies in people with CF.

People with CF are commonly deficient in these nutrients:

• Vitamin A
• Vitamin D
• Vitamin E
• Vitamin K
• Iron
• Calcium

What Is Tube Feeding?

Tube feeding is a way to provide nutrition and medication directly into the stomach when a person has difficulty eating or their digestive system is not functioning properly.

A feeding tube helps provide adequate nutrition and can help people with CF gain weight. Weight gain is especially important for children who are still growing.

 Placement 

Tubes can either be placed through the nose, in which they connect to the stomach, or they can be surgically placed directly into the stomach through the skin.

In Children 

Children with CF have higher nutritional needs due not only to the condition itself but also to the fact that they’re continuously growing. Tube feeding in children may be recommended to help ensure that a child with CF grows and develops in an expected manner for their age.

Types

There are two main types of tube feeding used for CF: nasogastric and gastrostomy. Both types allow for either continuous feedings that typically occur overnight or the administration of a specific formula inserted into the tube at different times throughout the day.

Nasogastric feeding tubes are small tubes that run from the nose directly to the stomach. These types of feeding tubes can be placed by the person with CF or a caretaker daily, weekly, or monthly.

Gastrostomy feeding tubes, or G-tubes, are small tubes that go directly into the stomach through the skin on the torso. For children, these tubes are usually placed while asleep under general anesthesia.

In adults, gastrostomy feeding tubes may be placed under local anesthesia using specific imaging instruments to guide the insertion. Conscious sedation (or twilight sleep, in which the person is awake but groggy and still able to breathe on their own) is sometimes used when tubes are placed in adults.

Side Effects 

Side effects from tube feeding are usually minor and easily treated.

In nasogastric feeding tubes, side effects can include irritation of the nose, a blocked tube that needs to be changed frequently, and a tube that becomes displaced due to coughing.

In gastrostomy feeding tubes, side effects can include infection around the insertion point of the tube and leakage.

A small number of people who have overnight feedings may experience vomiting or acid reflux, when stomach acid flows back into the esophagus.

Other side effects include:

• Constipation
• Regurgitation
• Cramps or bloating
• Diarrhea

Does It Hurt?

Nasogastric feeding tubes may be irritating but do not usually cause pain. Some people with a gastrostomy feeding tube may feel pain right after the tube is placed in the body, but this pain typically does not last long and can be relieved with pain medications.

Dietitian Consult, Supplements, and Timing 

The healthcare provider who oversees treatment of your CF may have you consult with a dietitian (a nutrition professional), to help formulate the types of supplements and nutritional liquids that will be administered through the feeding tube.

Depending on nutritional needs, feedings through the feeding tube may be administered at typical meal times, overnight, or on a constant basis.

CF Feeding Tube Aftercare 

Caring for your feeding tube depends on the type of tube.

Nasogastric Tube

To care for your nasogastric tube, you will need to flush or clean the tube often and take care of the skin around the nose and tube.

Flushing the tube requires adding warm water to the syringe after feeding and inserting it into the tube. After each feeding, be sure to clean the tube and nose area with warm water and mild soap.

Contact your healthcare provider if the tube continues to become clogged, there is redness and irritation in both nostrils, or you experience vomiting or bloating.

Gastrostomy Tube

After the insertion of the G-tube, you may experience drainage for a couple days. The skin around the tube should heal within one to two weeks.

Gently clean the skin around the tube one to three times a day using mild soap and water, or another sterile solution recommended by your healthcare provider.

To keep the tube from coming out, you can tape the tube to your abdomen or use a provided device to keep it in place. If you experience any signs of infection, such as redness, bleeding, and irritation, contact your healthcare provider.

Summary

A feeding tube can be a good option to help people with CF meet their nutritional needs since CF often causes malnutrition. There are two types of feeding tubes, one that goes through the nose to the stomach and one surgically inserted directly into the stomach. Side effects for both are usually minimal and easily treated.

A Word From Verywell 

A feeding tube can be a great option to help you meet your nutritional needs while living with CF. However, it is not without concerns. It is normal to feel burdened or embarrassed by a feeding tube. If you have questions or concerns, talk to your healthcare provider about your best options for taking care of your nutritional health.

If you are the parent of a child who requires a feeding tube, talk to them about it and explain how it can help their health. Do your best to normalize the experience by including the child in mealtimes as you would if they were consuming their meals orally.