ALS Multidisciplinary Clinic

A feeding tube is an essential element of care when ALS has progressed to the point where it interferes with a person’s ability to swallow food and fluids.

Feeding Tubes Why Does a Person with ALS Need a Feeding Tube? A feeding tube is an essential element of care when ALS has progressed to the point where it interferes with a person’s ability to swallow food and fluids. A feeding tube can reduce the stress and exhaustion of trying to swallow when swallowing becomes too difficult. Initially, it may supplement eating, or if swallowing is causing choking, may be used to replace eating. It can reduce the risks of choking and pneumonia by allowing another method of getting sufficient calories. A feeding tube can stabilize weight or help to recover lost weight. When a person has a feeding tube, it permits them to receive most of their nutrition through the tube, allowing them to eat foods that are enjoyable and safe to swallow, in amounts that feel comfortable for them.

How Important is it to Keep My Weight Stable? New research is exploring this question as our understanding of the relationship between good nutrition and improved survival increases. It is clear that a loss of body mass is associated with faster progression of the disease (Jawaid A, et al. Amyotrophic Lateral Sclerosis, 2010: Early Online, 1-7).

How Does a Feeding Tube Work? A feeding tube is a small tube that goes from outside the skin of the abdomen directly into the stomach. Most people who have a feeding tube take a balanced liquid nutritional supplement that comes pre-mixed in cans. Each 240 ml can is identified by a number indicating the concentration that when multiplied by 240 determines the number of calories in the can. For example, a 1.5 concentration had 360 calories. When a large syringe without a plunger is connected to the feeding tube, each can is poured directly into the syringe and by gravity it goes directly into the stomach. This is commonly referred to as a bolus feeding. Some individuals have a slow feeding delivered over a longer period of time with a simple pump connected to the feeding tube that controls the flow. This is frequently set up to occur when the person is asleep at night. The supplement is slowly dripped into the stomach overnight.

Where is a Feeding Tube Placed? The feeding tube is surgically inserted into the stomach through the abdomen beneath the left side of the ribcage and held in place internally in the stomach. The external portion of the tube, which is usually 6 inches long, has a cap or a three-way valve (stopcock) on the end to prevent leakage.

What Else, Besides Supplement, Can Go in the Tube? Nutritional supplements do not provide all the fluid that the body needs. Water can also be given through the tube. Water is usually added after the nutritional supplement to provide additional hydration and to flush any residual supplement from the tube.

Medications can also be given through the feeding tube. Pills can be crushed and mixed with warm water and poured into the tube. Some medications can be ordered in liquid form. However, some medications, particularly long-acting medications, must be taken whole and cannot be crushed. Check with your medical team first about which of your medications can and cannot be given through a feeding tube.

Does Insurance Cover Nutritional Supplements? Insurance generally pays for the nutritional supplement when more than half of the calories a person receives for the day is given through the feeding tube.

Will Others Notice? The feeding tube is easily concealed by clothing. The external portion of the feeding tube can be curled up and taped to the body when not in use.

When Is the Time to Begin Using a Feeding Tube? The best time to place a feeding tube for a person with ALS is when their breathing is not severely impaired and before any significant weight loss occurs. A physician will only recommend inserting a feeding tube when the procedure is unlikely to cause any complications. Generally, the safest time to insert a feeding tube is at or before the forced vital capacity (FVC) – a measure of breathing function – falls below 50 percent of normal. Someone who already has begun having swallowing, choking and other eating concerns should consider having one placed earlier, before starting to lose weight.

What Kind of Feeding Tube Is Best for Me? There are two main types of feeding tubes: the radiologically inserted gastrostomy (RIG), and the percutaneous endoscopic gastrostomy (PEG). Both RIG tubes and PEG tubes are inserted directly into the stomach through the abdomen and held in place internally, however, the procedure for inserting them is different.

The term PEG is often used interchangeably with the terms “feeding tube” and “gastrostomy tube,” but not all feeding tubes are actually PEGs.

Inserting a PEG tube To insert a PEG tube, another tube with a light at its end (endoscopy tube) is inserted down the esophagus (the “food pipe”) into the stomach. The light at the end of this tube shines through the stomach and skin, directing the surgeon to the spot where the PEG tube should be inserted. The surgeon makes a small incision through the skin and the wall of the stomach and inserts the PEG tube through it. The tube with the light is removed from the stomach once the PEG tube has been inserted.

Inserting a RIG tube A RIG tube is inserted with the aid of fluoroscopy, a type of x-ray that allows the interventional radiologist to view real-time moving images of the patient’s internal organs. Fluoroscopy enables the radiologist to find the right spot to insert the RIG tube through the skin into the stomach. To help identify the intestines (so they can be avoided), barium is given the night before. During the procedure a small tube is inserted into the nose and directed into the stomach to inflate the stomach; this tube is removed once the procedure is completed. During the procedure, the stomach is positioned near the surface of the skin. This “gastroplexy” is held in place with sutures called T – tacs. About 14 days after the RIG tube has been inserted, the T-tacs are removed.

Inserting a feeding tube: What are the risks? Inserting a feeding tube is a surgical procedure that requires anesthesia. For most people with ALS, the primary risk during the procedure is respiratory distress. This is due to any respiratory limitation that a person may have from their ALS. Anesthesia affects a person’s regulation of breathing. Lying flat can also make breathing more difficult for ALS patients.

During the feeding tube insertion, the anesthesiologist monitors the person’s breathing. Some individuals with few respiratory limitations may require only light sedation and no assistance with breathing. Others whose breathing is more impaired might need the assist of non-invasive ventilation (NIV) during the procedure. Individuals with more distressed breathing will usually receive only a local anesthesia and not be sedated. Each person is individually assessed by the anesthesiologist and a decision is made with the patient about the type of anesthesia that will be given.

Should a person experience respiratory distress, a tube may be temporarily inserted into the airway through the mouth or nose to help them breath during the procedure. Placing a temporary tube in the airway is called intubation. Intubation allows the airway to stay open and permits a ventilator to assist with breathing while the person is sedated. When the procedure is completed and the anesthesia has worn off, the intubation tube is removed. To prevent the possibility of needing intubation, you will be encouraged to consider having a feeding tube placed before developing significant respiratory concerns.

Other risks that are possible, but more rarely seen include bleeding, perforation of the intestine and infection.

Is One Tube Safer to Place? At MGH, our ALS physicians recommend a RIG tube for most of our patients. A RIG tube is significantly smaller than a PEG tube. A smaller tube requires less anesthesia to inserted. This helps to minimize the risk of respiratory complications that can result from anesthesia. Additionally, the endoscopic tube that is used in a PEG procedure is relatively large and may be more difficult for patients during the procedure, especially those persons who are already having swallowing and breathing issues.

Care and Maintenance of a Feeding Tube Feeding tubes are generally easy to care for. For the first two or three days after the feeding tube has been inserted, the tube may be uncomfortable. Until the incision heals, this discomfort is usually well controlled with medication.

The site where the tube enters the body is cleaned with soap and water. All feeding tubes experience some seepage; small amounts of liquid from the stomach travel along the outside of the tube to the surface of the skin, which can produce a crusty area on the skin around the site where the tube enters the body. This can be removed with soap and water.

Sometimes gastric juices from the stomach can cause irritation or even break down the skin around the feeding tube. Applying an antacid paste to the irritated skin can help prevent further damage and allow the skin to heal. Antacid paste is made by letting a small amount of liquid antacid sit for awhile so that it settles, then pouring off the liquid that rises to the top.

The tube itself is kept clean and clear of clogs by flushing water through it. Water is used so that any residual supplement will be rinsed from the tube. If a clog does develop in the tube, often cola inserted into the tube and left to sit will dissolve it.

Although the feeding tube is secured internally, if pulled hard enough, it can be pulled out. Reasonable care needs to be taken to secure the tube when it is not in use to avoid accidentally pulling it out. Curling it up and taping it to the body will help keep it from being accidentally pulled. If the tube is accidentally pulled out, it should be replaced as soon as possible. Waiting too long will result in the tract from the skin to the stomach sealing off. This can occur in a matter of hours.

Occasionally, as the body tries to heal the tract from the skin to the stomach, it produces extra tissue that extends outside the skin. This tissue may be tender and uncomfortable and can bleed easily. However, it can be removed during an office visit through a simple procedure, cauterizing it with silver nitrate. There is some mild and temporary discomfort associated with this.

Other Types of Feeding TubesWhat is a Mic-Key or Button? Mic-Key is the brand name of a type of feeding tube that is often called a “button” because its opening lies flush with the skin. A cap is used to access the tube.

Many of our ALS patients ask about the Mic-Key because it is less obvious than the RIG or PEG tubes, which extend outside the body. Because a RIG tube requires less anesthesia and poses less of a respiratory risk than inserting a PEG tube, our MGH ALS physicians consider this advantage of the RIG tube to outweigh the improved cosmetics of the Mic-Key.

What is a Gastrojejunal Tube (GJ tube)? A gastrojejunal tube, or GJ tube, is a feeding tube that is inserted into the stomach and continues through the small intestine. The tube is inserted like either the RIG or PEG, but it is directed further down the gastrointestinal tract beyond the stomach and into the jejunum (beginning of the small intestine). This tube is used when there is concern that the person may vomit when nutritional supplement goes directly into the stomach. Vomiting poses the additional risk that the person may inhale vomit into the lungs This can result in choking and/or pneumonia. Because the GJ tube bypasses the stomach, this risk is reduced. Nutrients are supplied through a GJ tube more slowly than through a RIG or PEG and a feeding pump may be required.

What is a Nasogastric Tube (NG tube)? A nasogastric tube (NG tube) is a tube that is inserted through the nose into the stomach. NG tubes are typically intended to remain in place only for a short period (day to weeks). However, NG tubes that are specifically intended as feeding tubes are smaller and made of more supple material. Nasogastric feeding tubes can be used for several weeks at a time.

For a person with ALS, a NG tube may be temporarily used for feeding until a RIG or PEG tube can be arranged to prevent weight loss or dehydration if the individual is becoming malnourished.