About Feeding Tubes
Most ALS patients at some point lose the ability to swallow food safely. This is when a feeding tube can be helpful. A feeding tube can allow you to receive the calories, water, and medicine you need without having to worry about choking.
Many people with ALS choose to have a feeding tube. It will not prolong your life significantly. But, the use of a feeding tube may improve your quality of life.
Some advantages to having a feeding tube include:
No choking, chewing, and swallowing problems
Can improve nutrition which helps to maintain weight, prevent deficiencies, and fight infection
The disadvantages may include:
The idea of a feeding tube may be intolerable
The insertion of a feeding tube is a surgical procedure requiring a hospital stay
Possible infections or discomfort with the opening for the tube
When should I get one?
Doctors recommend getting a tube early. If you wait until your respiratory system is compromised, the risk of choking, pneumonia, and the inability to cough increases.
Consider a feeding tube if you are experiencing any of the following:
Spending more than an hour for your meals
Lost 10% or more of your weight
Frequently choking when you eat
Dehydrated from lack of sufficient fluids
Excessive time and attention spent getting adequate food and water
If you get a feeding tube early, you can still enjoy eating by mouth for a while. Eventually, eating by mouth will become a lengthy, unpleasant chore. Having a tube in place will make things easier.
Types of feeding tubes
The PEG tube is used more often. The tube is approximately 10 inches long. A long instrument (endoscope) is passed through the mouth and down into the stomach. The feeding tube is threaded down and out through an opening in the belly (abdominal) wall. One of the strongest advantages of this method is that general anesthesia is usually not needed, only heavy sedation. This procedure can be done quickly with few problems. And you may be able to come home the same day.
A disadvantage of PEG tubes include aspiration pneumonia. This is when fluid gets into the airway and lungs, causing infection. Aspiration can be lessened by elevating the head at least 45 degrees during and after feeding, for a period of 30 to 60 minutes.
This tube is placed during a complicated surgery. During the surgery, an opening is made in the abdominal wall leading into the stomach. This procedure usually means a longer hospital stay. You may need to be under general anesthesia.
The jejunostomy (J-tube) is a long thin tube placed through the stomach ending in the small intestine (jejunum). The J-tube feeding tube may have less problems from aspiration pneumonia. If aspiration pneumonia becomes an uncontrollable problem, a J-tube may be recommended.
The disadvantages include:
A greater incidence of diarrhea, clogging, and abdominal swelling (distention)
Formula must be infused at a much slower rate, requiring the use and added expense of a pump
May interfere with your quality of life if you want to remain active
Placement is more expensive
Requires a more expensive product for problem-free digestion
The button tube is a new short tube that lies even with the skin. An extension tube is attached for feedings. The advantage to this type of tube is that there is no tubing left hanging on the abdomen.
You should remain in a semi-upright position for 30 to 60 minutes after each feeding. If you are able to walk, a short, slow stroll will help prevent regurgitation and aspiration problems.
While this is the fastest and simplest method, it can be the most dangerous. The bolus method uses a large syringe which is attached to the feeding tube. Liquid is poured into the syringe and allowed to flow in as fast as gravity will allow.
Serious problems do occur more often with the bolus method. They include respiratory depression, cramping, regurgitation aspiration, and overexpansion of the stomach. The bolus method is not the best method to use in the first few weeks. Time should be allowed for you to adjust to a liquid diet.
A person with ALS has the right to make their own decisions about feeding tubes. If problems with swallowing happen early on in the disease, it may make more sense to have a feeding tube placed. It can be emotionally difficult for the caregivers to watch a loved one losing weight and health due to inadequate nutrition.