Information About Feeding Tubes
What is a feeding tube?
It is a small, flexible tube, about ¼” in diameter that is an alternative route for nourishment and hydration.
Types of Tubes
The kind of tube recommended for people with ALS is the PEG - (Percutaneous (through the skin) Endoscopic (into the GI tract) Gastrostomy (hole in the stomach.)
Other kinds of tubes - Nasogastric – NG tube, Jejunostomy – J-tube
When should I consider getting a feeding tube?
- When nutrition is insufficient, as documented through lab values, patient’s own report or clinical signs
- When hydration is insufficient
- When ALS affects the muscles involved in eating: i.e. chewing, moving food in your mouth and swallowing.
- When eating leads to fatigue and one has difficulty eating enough to sufficiently nourish your body.
- When noticeable weight loss, malnutrition and dehydration are present.
- When decreased energy and increased fatigue accelerates the progression of weakness.
- When dysphagia (difficulty swallowing) occurs on a consistent basis.
- When aspiration (food or liquid taken through the mouth going down the windpipe and into the lungs) is suspected. Patients who aspirate are at a higher risk for pneumonia or infection.
What are the advantages of getting a feeding tube?
- To maintain hydration and a safe way to administer medications.
- To have a decreased risk of aspiration pneumonia.
- To decrease the risk of choking, chewing or swallowing problems when eating.
- To help you maintain weight, reduce fatigue and improve your resistance to infection.
- To conserve energy and time getting your food by mouth, simplify your meals, and reserve energy for other activities.
What are some reasons people don’t want a feeding tube?
- Insertion of a tube is a surgical procedure.
- Fear of potential side effects:
- A slight risk of infection at the tube site.
- Pain or discomfort at site of insertion
- It does not prevent the progression of ALS.
- Lack of control over the disease.
How will I know if a PEG tube is right for me?
- If you feel that the advantages of a PEG outweigh the disadvantages, the tube may be right for you.
- If you are spending more than an hour for your meals; if you feel like meals are a struggle (choking, gagging).
- If you have lost more than 10% of your weight or if you are dehydrated it may be a good time to consider a PEG.
When is the right time to have a PEG placed?
- Most doctors recommend getting a PEG early – before you absolutely need one.
- At a FVC 50% or greater
- Those considering a PEG should know that the sooner you have a PEG placed, the better your body will be able to recover from the procedure.
- When nourishment and respiratory function is better, the procedure can be done with less difficulty and decreased risk of respiratory problems during or after the procedure.
- When Food intake drops below the recommended levels of the following servings per day
- Three or more servings of meat or protein alternative.
- Two or more servings of milk or yogurt.
- Five or more servings fruits and vegetables.
- Six to Eleven servings of grains and starches.
- Four to Seven servings of fats.
When Food intake drops
- 6-8 8oz glasses of water or non-caffeinated beverage is usually required per day.
- Certain foods that are liquid at room temperature may also contribute to hydration such as sherbet, gelatin and ice cream.
- Fluid intake also helps relieve constipation, maintains bladder function and keeps the lungs clear.
Can the PEG be removed?
- The PEG can be removed at any time, for any reason.
- The tube is simply removed from the opening and the skin closes up in time.
- The removal of the PEG is virtually painless.
Can I still eat with a PEG?
- This depends on your ability to swallow safely.
- Your speech pathologist and nutritionist will discuss with you what kinds of foods you can safely eat.
- Many people initially use the tube solely for liquids and medication and as problems with swallowing progress, the PEG is more utilized.
- Ultimately, the PEG can be used as the sole method of nutrition.
Can I take medications through the tube?
Yes, these are your options:
- Some medications come in liquid form and they can be easily put down the tube.
- Some medications come only in pills, most can be crushed, dissolved in water and put through the PEG
- Verify with your pharmacist which medications can be crushed, dissolved or are available as liquid
How is the tube placed?
- Usually done by endoscopic technique
- The procedure is usually done under mild sedation (so you are in a twilight sleep state) with a local anesthetic.
- Rarely the placement of the tube is done under general anesthesia.
- Placement of the tube takes less than thirty minutes.
- A long endoscope is passed through the mouth, and into the stomach for visualization. There is a light at the tip of the endoscope that can be seen through the abdominal wall. A small incision is made externally at the location of the light and then the tube is threaded into the stomach and secured.
Recovery from tube placement
- Recovery from the sedation is usually within hours and the feedings begin within a day or two.
- An overnight stay to assure the patient’s tolerance to the feeding and for teaching of tube care to be started.
- Home care options are also put into place
- Formulas may contain different calorie concentrations so that feedings may be accomplished with less volume (Jevity or ultracal are 1Calorie per ml vs. Pulmocare or Respalor which is 1.5 Calories per ml)These are just a few examples.
- Many formulas now contain fiber to prevent constipation.
- Disease specific formulas may also be prescribed
- How many Calories are necessary to maintain proper nutrition?
- 25 Cals/kg =weight maintenance
- 30 Cals/kg=weight gain
- 35 Cals/kg=Calories for a highly stressed individual (i.e. recuperation from surgery etc)
- For example, a 127 lb woman or 58 kgs x 25 Cals =1440 Cals.
How is the formula administered?
- Bolus – A large quantity of formula is sent through the tube in a short period of time
- Gravity feed – One can of formula given at a time, is placed in a bag and allowed to flow in over 30 minutes
- Continuous Feed – a pump delivered a constant amount of formula over a long period of time.
What goes down the tube?
- Most medications
- Carbonated beverages (club soda, but never cola)
- Enzyme treatments
- Electrolyte replacement solution-under medical supervision
Written by: Theresa Imperato, RN and Lorraine Danowski, RD
The ALS Association Greater New York Chapter and Certified Center at Stony Brook
May 10, 2010
Last update: July, 2011