Living With a Feeding Tube

If your doctor tells you that you need a feeding tube, it can be a lot to process. It will change your life.

You may have a condition like Parkinson’s disease that makes it hard for you to chew or swallow. Or you might have a critical illness like cancer and lack the strength to eat enough to stay healthy. If you’re unable to eat and drink like you used to, a feeding tube can help you get the nutrition you need and lower your chances of choking.

Depending on your situation, the tube will run either through your nose or into your stomach or intestines. You don’t need surgery for a nasal tube. They’re often used if the need is temporary. You’ll need surgery for a gastric tube, the most common type, to run it through your belly.

A feeding tube can be uncomfortable and even painful sometimes. You’ll need to adjust your sleeping position and make extra time to clean and maintain your tube and to handle any complications.

Still, you can do most things as you always have. You can go out to restaurants with friends, have sex, and exercise. A feeding tube can remain in place as long as you need it. Some people stay on one for life.

Use and Care

Tubes can deliver food in different ways. Some use a pump or syringe to push the food, while others rely on gravity. Your home care provider -- nurse, dietitian, or other helper -- will show you how to use and care for it.

Key things to keep in mind for most kinds of feeding tubes include:

Clean your hands. Use alcohol-based hand sanitizer or soap and water before you work with the tube. Make sure your hands are dry.

Prevent clogs. This is one of the biggest problems with feeding tubes. Always flush your tube with the suggested amount of water before and after you use it, including when you use it to take meds. You’ll need to flush it even on days you don’t use it.

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Watch for infections. It’s important to keep the spot on your skin where the tube goes into your stomach -- the stoma -- clean and dry. Check it every day for irritation, redness, swelling, or infection. Apply an antibacterial ointment after cleaning the area.

Care for teeth and gums. Even if you get most or all your nutrition from a tube, your oral health is still important. Brush your teeth, gums, and tongue daily, and keep your lips moist with balm or petroleum jelly.

Your Diet

You’ll likely use a special formula with calories and nutrients tailored for you. You can buy what’s called an enteral formula in a can. Most are made to flow well through a tube.

With your doctor’s OK, you can make your own formula in the blender. You’ll need to make sure it has the recommended calories, vitamins, minerals, fiber, and fluids.

Other liquids can go into a tube, too:

  • Almost anything clear, such as water and club soda
  • Enzyme treatments
  • Fluids that replace electrolytes, like sports drinks
  • Juice

Most meds can go through a tube. Some come as liquids. You may be able to crush or dissolve pills and put them into the feeding tube, but talk to your doctor first.

Sometimes you might get nausea, cramps, or stomach problems. If so, your doctor may suggest you check that your tube is placed correctly, switch formula, or she may prescribe medication to help you feel better.

Life With a Feeding Tube

When you can’t eat the same way as everyone else, it can change your social life and make you feel left out. You may miss the taste of food. You may also feel self-conscious about your tube. You might need to rethink how you do everyday things like dining in restaurants and traveling.

Shared meals. This can be a tricky adjustment. If you’re on the road, carry a wallet-sized card to quickly describe why you’re not eating or eating in a different way. If you’re comfortable at social meals, others likely will be, too. Some people hook up their pump and eat along with everyone. Others even travel with a blender and ask the kitchen to blend the dishes.

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If you aren’t comfortable using your feeding tube in public, ask the manager if there’s a private place for you to go. Under the Americans with Disabilities Act, the restaurant legally must fill any reasonable requests.

Intimacy and sex. Open communication and a bit of planning can help you and your partner keep your emotional and physical relationship on track. For instance, schedule a time together for when you’re not taking in food. If your doctor hasn’t discussed sex with you, bring it up.

Stay active. Tube feeding doesn’t need to keep you from most physical activities. You can run or walk, but talk to your doctor about yoga or other exercises that work your abdomen muscles. Even swimming is fine if your incision site has healed and the water is clean. Nasal feeding tubes have no restrictions on swimming, other than making sure the tube is closed, clamped, and not hooked up to a feeding pump. Ocean water and well-maintained private pools are your best bets if you have a feeding tube in your abdomen. Stay away from hot tubs, as they teem with microorganisms that can cause infection.

Seek support. Family and friends can give you confidence to adjust to your new life. You need support, but also encouragement to stay independent. You might want to get advice and help from a specialist who works with feeding tube users. This can be a psychologist, a nurse, or someone else in the community.

WebMD Medical Reference Reviewed by Minesh Khatri, MD on September 15, 2019

Sources

SOURCES:

ALS Association: “Maintaining Good Nutrition With ALS: A Guide for Patients, Families, and Friends,” “FYI … Information About Feeding Tubes.”

The Oley Foundation: “Choosing the Right Tube for You,” “Home Enteral Nutrition,” “Living With Enteral Feeds: An Exploration of Physical and Psycho-Social Issues,” “Restaurant and Bathroom Cards,” “Swimming With IV Nutrition/Tube Feedings,” “I Can Eat in Restaurants.”

Memorial Sloan Kettering Cancer Center: “Tube Feeding With a Pump,” “Tube Feeding Using the Gravity Method.”

Oral Cancer Foundation: “How to Use and Care for Your Feeding Tube,” “PEG Complication Chart.”

Feeding Tube Awareness Foundation: “Tube Feeding Basics: Site Closure.”

The University of Texas M.D. Anderson Cancer Center: “Tube Feeding: What You Need to Know.”

CP Family Network: “DIY Blenderized Diets for Tube Feeding.”

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