Feeding Tubes for ALS |
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As ALS progresses, it can become harder to eat well and stay hydrated. If you notice that you are coughing or choking on food or liquid, having trouble swallowing, getting fatigued while chewing, or losing weight, you may want to consider receiving some or all of your nutrition and hydration through a feeding tube.
A feeding tube is a short, flexible tube inserted into your stomach that can help you safely get the calories, nutrients, and hydration your body needs. Getting a feeding tube can help you live longer and have a better quality of life. |
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What are the benefits of feeding tubes?
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A feeding tube can help you maintain your weight and strength and have more energy throughout the day. It can also help you stay well hydrated, which can thin your saliva and make swallowing easier.
From a safety standpoint, a feeding tube can reduce your risk of choking or having food or water go down the wrong pipe (into your lungs instead of your stomach), which can lead to life-threatening pneumonia for people living with ALS. |
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Once you have a feeding tube, you can enjoy eating by mouth as long as it is still safe. Sitting down for a meal knowing that your body will already get the nutrition it needs can alleviate mealtime stress and make eating more pleasurable.
If pills and vitamins are hard to swallow, you can crush and administer them through the feeding tube as long as they are crushable. Talk with your doctor to make sure your pills are crushable or discuss alternative ways of taking your medication.
If pills and vitamins are hard to swallow, you can crush and administer them through the feeding tube as long as they are crushable. Talk with your doctor to make sure your pills are crushable or discuss alternative ways of taking your medication.
What is the procedure like?
Placing a feeding tube is generally a safe, simple procedure that can take as little as 30 minutes. If there are no complications, you may go home the same day. You may experience mild pain and discomfort.
For people with diminished breathing capacity, receiving anesthesia while lying down can raise the risk of respiratory distress. To minimize surgical risks and complications, it is recommended that ALS patients have feeding tubes placed before their Forced Vital Capacity (lung function measurement) falls below 50%.
At the hospital or surgery center, a dietitian will show you how to use and care for your feeding tube and prescribe the correct liquid nutritional supplement, which should be covered by insurance. Your supplements and supplies should arrive shortly after you get home and will be delivered monthly after that. A nurse should visit your home shortly after your surgery to check your PEG feeding tube and answer any questions you may have.
For people with diminished breathing capacity, receiving anesthesia while lying down can raise the risk of respiratory distress. To minimize surgical risks and complications, it is recommended that ALS patients have feeding tubes placed before their Forced Vital Capacity (lung function measurement) falls below 50%.
At the hospital or surgery center, a dietitian will show you how to use and care for your feeding tube and prescribe the correct liquid nutritional supplement, which should be covered by insurance. Your supplements and supplies should arrive shortly after you get home and will be delivered monthly after that. A nurse should visit your home shortly after your surgery to check your PEG feeding tube and answer any questions you may have.
How does a feeding tube work?
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If you can still eat safely without choking or having food or liquid go down the wrong pipe, you can use your feeding tube to supplement what you eat orally. As eating becomes more difficult, your feeding tube can become your primary source of nutrition.
Pre-made liquid nutritional supplements can either be poured through the tube into the stomach all at once or delivered as a slow, gradual drip. Instead of taking these nutritional supplements, you can use an industrial-strength blender to liquefy homemade foods. |
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When you are done with each feeding, you or your caregiver can disconnect the longer external tube from your PEG tube and rinse it out. Your PEG tube button will be flush with your skin, under your clothing, and not visible to others.
Should I get a feeding tube?
This is a personal decision that will likely align with your long-term goals and advance directives. Talk with your ALS clinic or local medical team about the pros and cons of getting a feeding tube.
Before getting a feeding tube, you may be able to implement a variety of other strategies that can help you safely get the nutrition and hydration your body needs. Your speech language pathologist can do a swallowing evaluation and recommend swallowing techniques, your dietitian can conduct a nutrition assessment and help modify your diet, and your occupational therapist can recommend adapted feeding tools like built-up utensils and modified plates.
Learn how you can increase your calories, modify your food, stay hydrated, and conserve energy on our ALS Nutrition page.
Before getting a feeding tube, you may be able to implement a variety of other strategies that can help you safely get the nutrition and hydration your body needs. Your speech language pathologist can do a swallowing evaluation and recommend swallowing techniques, your dietitian can conduct a nutrition assessment and help modify your diet, and your occupational therapist can recommend adapted feeding tools like built-up utensils and modified plates.
Learn how you can increase your calories, modify your food, stay hydrated, and conserve energy on our ALS Nutrition page.
