When to consider a feeding tube
Consider getting a feeding tube as soon as your weight goes 10% to 15% below normal. An important advantage of a feeding tube for people, who are unable to drink, is the ability to have liquids again, and avoid dehydration. Having a feeding tube does not mean that you have to stop eating normal food. If you decide to have a feeding tube, do it while you are still relatively healthy, and able to maintain a diet of normal meals, supplemented by tube feeding, thereby minimizing weight loss and maintaining better health. Also, it may take time for your body to get used to significant dietary changes, such as a high volume of nutritional supplements, and it is better to go through that change when you are relatively healthy.

What type of tube should you have?

There are three main places to insert feeding tubes:

• through an incision into the stomach;
• through an incision into the side of the neck;
• through the nose.

Each route has its own advantages and disadvantages. Also, there are different types and diameters of tubes. Tubes wider in diameter are less likely to clog with food. The decision regarding which route to choose should be made in conjunction with your family and doctor.

Stomach Tube
To install a stomach feeding tube requires a simple 30-minute operation under mild sedation. There are several types of stomach tubes. Discuss which type is best for you with your doctor. Unlike neck and nasal tubes, a stomach tube remains in place, and is unplugged and plugged at each feeding. Initially, a dressing is required around the incision. A small amount of leakage around the incision is not unusual. When the incision heals, leaving it open to the air may be the best way to keep it healthy.

An Adjustment Period
After the operation, you will probably have to stay in the hospital for a few days so that healthcare professionals can assess your body's ability to get the nutrition it needs. They will prescribe the quantity and type of nutritional supplements you should receive through tube feedings. During this period, learn how your new tube-feeding system works, how you initially react to liquid food, and how to control the flow, particularly if you start coughing.

Feeding Pump
When you first get a feeding tube, a feeding pump may be necessary. However when your body gets used to tube feeding, gravity feeding from an IV pole without a pump will probably be sufficient.

Nasal Feeding Tube
No surgery is required for nasal feeding. Some nasal tubes can be taken out after each feeding, while others are left in place for weeks. Changing nasal tubes requires special training and cleanliness. Nasal tubes must be relatively thin, and therefore are only suitable for thin liquids. Nasal tubes are generally only used for people who are immobile.

Excessive Coughing
You may find that tube feeding causes excessive coughing. This may happen for a number of reasons, including excess saliva, not sitting up enough, the feeding rate is too fast, or because of various other stomach problems.

If this happens to you, consult your dietitian who may suggest reducing your feeding rate. Another option is to lower the height of the feeding container to just above the height of your stomach and fully open the valve. This will allow your stomach to take in the food at its natural rate rather than a rate determined by higher gravity or a pump. The ability to digest liquid nutrients varies greatly from person to person.

Lying Down
After tube feeding you should not lie down for at least one to two hours. When lying down it is best to lie on your right side. The stomach empties into the intestines through the right side of the stomach cavity; therefore when lying on your right side, liquid that has remained in your stomach will more likely flow into the intestines, rather than back up the throat.

Home care
After you have a feeding tube installed, and before leaving the hospital, arrange for appropriate home care assistance while you are getting used to tube feeding. You will probably have some questions regarding tube feeding, cleaning procedures, supplies, suppliers, government assistance programs, etc. Also, hooking up the feeding bag requires a few tricks to prevent sending a tube full of air into your stomach before the food.

Dehydration
It is a serious mistake to assume that you are getting enough liquid because you are living on liquid nutrients. Concentrated liquid nutrients do not have much liquid! Take lots of water or other liquids to avoid dehydration, which will cause a lot of problems you don't need.

Choosing Tube-Feeding Equipment
When you first have your feeding tube installed, you can learn in the hospital what your equipment needs will be. When you are at home you may first be using equipment supplied by your regional ALS Society Unit or home care for a few weeks, after which you will need to get your own equipment. You will need a method to hold up the container while feeding, such as an IV pole, a supply of feeding containers, some feeding syringes and a supply of liquid food.

Tube-Feeding Diet
A dietitian at the hospital will usually work out your tube-feeding requirements based on what you can still eat normally and your estimated calorie requirements. Because your eating abilities will change, your tube-feeding requirements will probably increase over time. When this occurs, increased feeding tube requirements should be recalculated by a dietitian. Note that most dietitians, and many doctors, are not familiar with the effects of ALS and may prescribe volumes of food in excess of your body's ability to absorb it. This can cause severe coughing if the liquid is increased to a level beyond what your system can tolerate. If you find the liquid nutrition you are taking causes thick mucus in your throat, try mixing some thinner milk with it.

Commercial Prepared Food
You should discuss the various commercially prepared alternatives with a dietitian.