Nutrition: Feeding Tubes
If you are choking and/or losing a significant amount of weight in spite of the suggestions given in the “Practical Swallowing Tips” section, it is time to discuss other treatment options, such as a feeding tube, with your doctor. It is time for a feeding tube when you experience accelerated weight loss due to insufficient caloric intake, dehydration, choking and/or aspiration on foods/liquids, and ending meals prematurely because of swallowing difficulties or lack of energy to complete a meal.

The first time you think or hear about a feeding tube, can be frightening. Many times it is the unknown that is the most frightening. It is recommended that you discuss this with your doctor, as he or she can provide you with all the information you need in order to make an informed decision. Getting a feeding tube will likely improve your nutrition and provide you with the best chance of maintaining strength and health. Also, it is important to know that you can still talk and eat for pleasure once the tube is in place. The tube will provide a route for your main nutritional needs and medicines. Sometimes your doctor may suggest a feeding tube before you think it is necessary. If your breathing is beginning to be affected by ALS, placement of the feeding tube is usually recommended because surgical complications rise significantly if your lungs are weak (you can not undergo anesthesia safely).

The main type of feeding tube placed is known as the PEG (percutaneous endoscopic gastrostomy). It is placed by making a small hole in the skin over the stomach and then a soft tube is place into the stomach. Two types are available. The typical one extends a few inches outside the abdomen. It allows you to see that the nutritional supplement is flowing the way it should. The other form is know as a button PEG, and sits flush against you abdomen. A small removable tube is inserted into the button each time you are ready for nutrition and/or medicines. A good site to view feeding tubes is www.rileypediatricsurgery.com

The surgical procedure to place the tube takes on average approximately 30 minutes. It is generally outpatient surgery. You will be shown how to use it. It is very easy to do and hard to “mess up”. If you need extra help, your doctor can arrange for a home health agency to work with you for a few days. Also, your doctor or a nutritionist will develop a nutrition plan using any one of several liquid nutritional supplements (such as Ensure, Jevity, Isocal, Promote, etc.). If you have stomach cramps, diarrhea, or constipation with one product, changing to another product frequently helps. Most people have little problem with their tube. Rarely, it can leak a little, be sore, or get clogged and/or have to be changed. The best thing about having the feeding tube is that now you can enjoy living again! The effort and time you spent trying to eat can be spent more enjoyably!

Troubleshooting the Feeding Tube Formulas - We found that straight bolus feedings (pouring a can of formula into a large syringe that then goes into the feeding tube that drains directly into the stomach) was too much for Jeff. It caused nausea. We had to switch to a 24-hour continual feeding pump that pumped the prescribed amount of calories (cans) of formula at a set rate all day and night. This stopped the nausea. Other people we have spoken to have not had this problem, others have.