Returning to Eating After Feeding-Tube Use

A feeding tube delivers liquid nutrition straight into the stomach or the small intestine. In cancer care it is used when you cannot eat or digest enough food to stay nourished. Staying nourished raises the chance of getting through treatment without unplanned breaks.

The type of tube says something about the plan. A nasogastric tube goes through the nose and down the throat. It is used when support is needed for only a few weeks. A gastrostomy tube, often called a G-tube or PEG, sits in the stomach through a small opening in the belly. A jejunostomy tube goes into the small intestine and is usually used for longer-term feeding.

The tube did not weaken your swallow. Radiation to the head and neck, surgery, chemotherapy, and immunotherapy can all damage the muscles and nerves that move food from mouth to stomach. Weeks of not swallowing then add stiffness on top of that.

The National Cancer Institute is direct on this point: "Some people can still eat by mouth when using enteral nutrition. Before doing so, it is important to ask your doctor if it is safe for you."

A speech-language pathologist, or SLP, is the clinician who answers that. An ear, nose and throat doctor is often involved too. The assessment usually starts at the bedside. The SLP watches how you sit, how you feed yourself, and what happens when you swallow.

Two tests look inside.

• A modified barium swallow study, sometimes called videofluoroscopy. You eat and drink small amounts mixed with barium, a liquid that shows up on X-ray. The X-ray runs as a video, so the team can see where food goes and where it gets stuck.
• A fiberoptic endoscopic evaluation of swallowing, or FEES. A thin tube with a camera and a light goes through the nose to the back of the throat. The SLP watches you swallow real food.

Both tests can be done in an outpatient clinic. Ask which one you are getting and ask to see the pictures. Neither one takes long.

Aspiration means food or fluid goes into the airway instead of the food pipe. It can lead to pneumonia. This is the reason the diet is stepped up slowly rather than all at once.

Signs during or after a meal include coughing or choking, gurgling sounds from the throat, a wet or gurgly voice, and coughing food back up after eating. Some people aspirate without coughing at all. That is called silent aspiration, and it is one reason a video test can show something a bedside check misses.

Many teams describe food and drink using a shared scale called the IDDSI framework, from the International Dysphagia Diet Standardisation Initiative. It has eight levels numbered 0 to 7. Drinks are described by levels 0 through 4. Foods are described by levels 3 through 7. The point of the scale is that "soft diet" means the same thing in the hospital, the rehab unit, and your kitchen.

Ask for your level in writing, for both drinks and food. Ask what has to happen before you move up one level, and who decides.

For the softer end of the range, the National Cancer Institute suggests scrambled or soft-boiled eggs, cottage cheese, macaroni and cheese, mashed potatoes, cooked cereals like Cream of Wheat or grits, creamy peanut butter, soups and stews, pureed cooked foods, and salads made with chicken, egg, or tuna. For desserts and snacks: yogurt, pudding, custard, flan, applesauce, bananas, ice cream, sherbet, sorbet, gelatin, milkshakes, and smoothies. If calories are short, instant breakfast drinks and liquid supplements can fill the gap.

Two practical tricks from the same source: soften dry foods with gravy, sauce, or other liquid, and use a blender to thin what is too thick.

These come from MedlinePlus, the patient library run by the National Library of Medicine.

• Sit up as straight as you can while eating.
• Stay sitting upright for 30 to 45 minutes after you finish.
• Take small bites, under 1 teaspoon of food at a time.
• Chew well and swallow before taking another bite.
• Do not mix solid food and liquid in the same mouthful.
• Do not wash solids down with a sip of liquid unless your therapist says that is fine for you.
• Do not drink thin liquids until your provider or therapist clears them.
• Do not talk and swallow at the same time.
• If one side of your face is weak, chew on the stronger side.
• Keep meals unhurried.

Swallowing muscles respond to use. In one study of people having chemoradiation for head and neck cancer, patients who stuck to a swallow exercise program done three times a day did better than those who did not. Among those who followed the program, 54.4 percent were eating a regular diet a month after treatment, against 21.4 percent of those who did not. A month after treatment, 22.8 percent of the group that followed the program were still dependent on a feeding tube, against 53.6 percent of those who did not.

The exercises in that program included effortful swallows, gargling, tongue exercises, the Mendelsohn maneuver, and Shaker head lifts. An SLP taught them and checked in weekly. Ask for the written set, and ask how often to do them.

Removal is not a reward for feeling better. Teams usually watch three things: how many calories you actually take in by mouth, whether your weight has stopped falling, and whether you are drinking enough. Weigh yourself on the same scale, at the same time of day, and write it down. Bring the log to appointments.

While the tube is still in, keep the site clean. Wash the skin around it with mild soap and water one to three times a day. Flush the tube after every feeding and after every dose of medicine, so it does not clog.

Call 911 or go to an emergency department if:

• You choke during or after eating or drinking, or food or drink will not clear from your airway.
• You have real trouble breathing, are gasping, or your lips or face turn blue or grey.
• You cough or vomit blood.
• A fever comes with breathlessness, chest pain, shaking chills, confusion, or a racing pulse. After aspiration, a chest infection can build quickly.
• You are having chemotherapy and your temperature reaches 100.4 degrees Fahrenheit or higher. CDC treats fever during chemotherapy as a medical emergency, not a call-and-wait.

Call your cancer team the same day if:

• You develop a new cough, or bring up phlegm, in the day or two after starting food by mouth.
• You are losing weight.
• Swallowing is getting harder rather than easier.
• Pain in your mouth, lips, or throat makes it hard to eat, drink, or sleep.
• The feeding tube is pulled out, leaks, or will not unclog.
• There is redness, swelling, an odor, pus, or bleeding at the tube site.

A cough with fever after a meal is how aspiration pneumonia usually announces itself. Do not wait it out, and say on the phone that you have been eating by mouth again after tube feeding, because that changes what gets looked for.

It is worth learning what to do if someone chokes before you need it. Your speech-language pathologist or the tube-feeding nurse can show a family member the back blows and abdominal thrusts, and how to position you if food goes the wrong way.

• Nutrition in Cancer Care (PDQ) Patient Version — National Cancer Institute
• Easy-to-Chew and Easy-to-Swallow Foods — National Cancer Institute
• Mouth and Throat Problems and Cancer Treatment — National Cancer Institute
• Swallowing problems — MedlinePlus, National Library of Medicine
• Swallowing difficulty — MedlinePlus, National Library of Medicine
• Dysphagia and Swallowing Disorders — MedlinePlus, National Library of Medicine
• Jejunostomy feeding tube care — MedlinePlus, National Library of Medicine
• Swallowing Disorders in Adults — American Speech-Language-Hearing Association
• Swallow Preservation Exercises during Chemoradiation Therapy Maintains Swallow Function — PubMed Central, National Library of Medicine
• Fever and Cancer Treatment — CDC
• The IDDSI Framework — International Dysphagia Diet Standardisation Initiative