The PEG and Tube Feeding: Who Needs Them?

 Individuals with ALS who have trouble swallowing (dysphagia) often can benefit from placement of a feeding tube.  Dysphagia can make eating frustrating and tiring.   When swallowing dysfunction worsens, food or liquids can “go down the wrong pipe”, resulting in aspiration pneumonia.  In addition, depression associated with chronic disease can reduce appetite and food intake.  It is not uncommon for ALS patients with dysphagia to have severe weight loss, dehydration, and extra weakness because of poor nutritional intake.  A feeding tube makes achieving or maintaining good nutritional status easier. 

What is a PEG?

 The most common type of feeding tube is called a PEG (Percutaneous Endoscopic Gastrostomy).  This tube goes through the skin and muscle of the abdominal wall directly into the stomach.  Some individuals can have a PEG placed as an outpatient, although those with breathing problems will require a short hospital stay.  Since other types of feeding tubes are much less common, this discussion will be limited to PEG tubes. 

What goes into the tube?

 Liquid nutritional formulas delivered through the tube provide complete nutrition.  Your doctor and dietitian will determine which formula is best for you, and how much you’ll need to meet your nutritional needs.  In addition, water and medications can be given through the tube.  This can help in the avoidance of serious medical problems resulting from dehydration or skipping medications. 

Does having a PEG mean I’ll have to be hooked up to a machine?

 No.  Liquid nutrition can be given by bolus (one large quantity pushed in with a syringe) or by hanging a bag of liquid feeding and allowing the liquid to drip by gravity.  These 2 means of feeding do not require “a machine” (i.e., an electric pump). 

Can I still eat if I have a PEG?

 That depends on your swallowing function.  Your speech therapist will determine what dietary consistency is most appropriate for you, and if you should rely solely on the PEG for nutrition.  Often, people rediscover the joy of eating following a PEG placement since there is less pressure to eat for sustenance, and food can be taken for pleasure. 

Will my ALS get better with a PEG?

 Not exactly.  The ALS disease – the progressive death of the motor neurons and the muscles they activate – will continue to progress.  However, the nutrition and fluids provided through the PEG can improve the weakness, tiredness, and susceptibility to infections that are often caused by malnutrition and dehydration. 

Should I think about getting a PEG? 

 It is good to think about having a PEG placed if you have “bulbar” (speech/swallowing) problems.  Even if you are not having difficulty eating at present, there is a good possibility that this may develop in the future, due to the progressive nature of ALS.  The better your nutritional status, the stronger your muscles, including your breathing muscles, will be.  Placement of a PEG and tube feeding will require a major adjustment in lifestyle; however, the “pros”, both physical and psychological, of good nutrition will outweigh the “cons” of such an adjustment for most people.