Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder associated with the death of motor neurons. These are nerve cells that control the voluntary muscles, which are essential for movement.
As the condition progresses, the muscles weaken and waste away, resulting in a loss of muscle control. Although ALS can progress differently in each person, many find it increasingly difficult to eat and drink as the condition progresses. In severe cases, one option could be tube feeding to ensure that the person gets enough nutrients.
What is tube feeding?
Tube feeding involves implanting a device that can be used to deliver essential nutrients and liquids directly into the patient’s stomach. The content can be tailored to their needs and can include certain types of oral medications.
After having a feeding tube inserted, the patient can still choose to eat normally.
Types of feeding tubes
People with ALS may be recommended one of two types of feeding tubes: a percutaneous endoscopic gastrostomy (PEG) or a radiologically inserted percutaneous (RIG) tube. Both tubes are surgically inserted through the skin and into the stomach, leaving an external section that can easily be sealed to prevent leakage.
When a PEG tube is inserted, the patient will usually be sedated and a local anesthetic applied to the site of the surgery. An endoscope — a small, flexible tube with a light on the end — will be passed through the mouth and into the stomach. This light will be visible through the skin once in the correct location, enabling the surgeon to see where the incision should be made to ensure the PEG tube is safely inserted. Once the PEG tube has been secured, the endoscope is removed.
A RIG tube is inserted using a type of real-time X-ray, called fluoroscopy, to visualize the internal organs and insert the tube into the stomach without damaging other organs. Normally, the patient will be given barium the night before, allowing it to reach the intestines before the procedure. During the procedure, a tube will be passed through the patient’s mouth to slightly inflate the stomach with air and place it nearer the surface of the skin. Once the incision has been made and the RIG tube is inserted, a dye that can be visualized by X-ray will be flushed through the tube to confirm that it has been correctly placed.
There are three more types of feeding tubes that are less commonly used. They are:
- Mic-Key, a type of discreet feeding tube that lies flat against the skin. However, the procedure to insert it may be associated with a higher risk of respiratory failure in ALS patients.
A gastrojejunal (GJ) tube, which is inserted in a similar way to a PEG or RIG tube, but it extends beyond the stomach and into the small intestine. This is normally only used if there is a high chance of the patient vomiting if the nutrients are delivered to the stomach.
A nasogastric (NG) tube, which may be used as a temporary measure before receiving a PEG or RIG tube. This is a feeding tube inserted through the nose and passed down into the stomach.
Risks of feeding tubes
The procedure of implanting a feeding tube generally carries little risk. People normally recover from the procedure within a few hours and will be able to go home from the hospital on the same day unless they were significantly dehydrated or malnourished prior to the surgery.
People may experience some pain at the insertion site, and there is a chance that the site can become infected. It is important to follow guidance on keeping the tube and insertion site clean to reduce this risk.
When is a feeding tube recommended
A feeding tube is normally recommended when a person is struggling to eat and drink to the point where he or she is not getting enough nutrients or is becoming dehydrated. This can result in weight loss, and normally a feeding tube is considered when someone has lost more than 5 to 10 percent of their normal weight.
It can also be recommended if the patient has a high risk of choking or aspiration, where food enters the airways and increases the chance of pneumonia.
A patient may also opt to get a feeding tube when eating becomes a significant chore; taking over an hour to eat a meal, for example.
As ALS can cause progressive breathing problems, it is recommended that a feeding tube be inserted before respiratory function has declined too much. If the person is below 50 percent forced vital capacity (FVC), a measure of lung function, this can increase the risks associated with the procedure and recovery could be slower.
Ultimately, the choice to get a feeding tube is a personal one and should be made after discussing all options with a medical professional.