FEEDING TUBES ARE NOTHING TO FEAR, SAYS MDA CLINIC DIRECTOR
Q: What is a feeding tube? Why does it have so many confusing names?
A: A feeding tube is a small, flexible tube, about the diameter of a
pencil, used to allow liquid nourishment to enter the stomach directly,
bypassing the mouth, throat and esophagus. The feeding tube is often called
a PEG tube, which stands for percutaneous (through the skin) endoscopic
(into the GI tract) gastrostomy (hole in the stomach) tube. It's also
simply called a gastrostomy tube, or g tube.
Q: Why consider a feeding tube in ALS?
A: Many people who have ALS will develop dysphagia (difficulty swallowing)
at some point. Swallowing can go from adequate to significantly impaired
in months. This can lead to malnutrition and weight loss from inadequate
protein and calorie intake. When this occurs, the body uses muscle as
a source of energy and protein. This accelerates the progression of weakness.
A feeding, or PEG, tube can restore adequate protein and calorie intake.
One of the risks of dysphagia is that food or liquid taken through the
mouth may go down the trachea (windpipe), rather than down the esophagus
to the stomach. This is called aspiration. Aspiration causes a high risk
of infection in the lungs (pneumonia). Thin liquids and foods that crumble
are especially likely to be aspirated.
Q: What's the right time to put in a feeding tube?
A: Because of the nutritional deficiencies and the risk of aspiration,
I prefer placing a PEG relatively soon after dysphagia symptoms begin.
Another reason for placing the PEG early is that progression of respiratory
weakness often parallels the dysphagia. When respiratory function is
better, the procedure can be done with less difficulty and less risk
of respiratory problems immediately following tube placement.
Q: Can you still eat and drink if you have a PEG tube?
A: The gastrostomy tube creates an alternate route of entry into the
stomach but doesn't affect oral intake. In the early stages of dysphagia,
it can be used to supplement oral intake of food and fluids. Later on,
when it's dangerous or impossible to consume any food or drink orally,
it can be used as the sole method of nutrition. Many readily available
liquid pre- parations designed to provide a complete and balanced diet
can be used as the sole source of nutrition. Q: Can medication be given
through a PEG? A: When a person has trouble swallowing, he may be unable
to swallow pills. Many medications can be crushed, dissolved and given
through the PEG. Some capsules can be opened and sprinkled into water
or liquid food. Medication taken this way should be well mixed with
water, so that it doesn't remain in the tube, where it might get hard
and block it. If there is a liquid preparation of a medication, it can
easily be administered through the tube. Some medications come in patches
and are absorbed through the skin. These include certain hormone supplements,
some heart medications (nitroglycerin) and one blood pressure medication.
Check with your doctor or pharmacist about alternative preparations
Q: What about heartburn?
A: When gastroesophageal reflux (movement of food or liquids up from
the stomach into the esophagus) is a problem, drugs to reduce acid release
are useful. Drugs to reduce acid release are useful if there is any
problem with gastritis (stomach inflammation) or reflux. Gastritis and
reflux aren't caused by ALS, but they're very common and can result
in stomach pain or heartburn when using a PEG tube.
Q: What's involved in placing a PEG tube?
A: Placement of a gastrostomy tube generally takes about half an hour.
The procedure can be done with heavy sedation and local anesthesia,
or under general anesthesia. Most people experience moderate pain for
up to several days after tube placement. This pain can generally be
relieved well with pain medication. I prefer to admit patients to the
hospital a day in advance of placing the PEG. This permits me to use
intravenous fluids to correct dehydration and to give respiratory treatments
to maximize lung function. Generally, I don't begin tube feeding until
the day after placement of the PEG tube. Keeping the patient in the
hospital after placing the PEG also permits teaching the patient and
family how to use the PEG. The insertion procedure is generally performed
by a gastroenterologist (stomach specialist).
Q: Is the PEG tube noticeable?
A: The PEG tube is cosmetically good. Most people use it several times
a day, the same as taking meals. When not being used, the PEG tube can
be placed into a loop and taped flat against the abdomen. It's easily
concealed by clothing.
Q: What happens if the PEG tube accidentally comes out?
A: If the PEG tube is accidentally pulled out, it can usually be replaced
easily at an emergency room with a Foley catheter, the commonly used
bladder catheter. Because of the way the PEG tube is designed, it's
not possible to push it back in from the outside. The Foley catheter
has a bulb at the tip that is inflated after it's inserted to hold it
in, so it can be inserted from the outside. This is easy to do, and
no anesthesia or sedation is needed. However, it should be done within
hours of a PEG or Foley coming out; if you wait until the next day,
the small hole from the skin to the stomach may already be sealing up
and it may not be possible to insert a Foley from the outside. If the
hole does seal up, a new PEG can be put in by the same method as the
Q: How do most people like the PEG tube?
A: My experience has been that after receiving a PEG, most people decide
that it was a good decision.
Q: Are there alternatives to the PEG tube, such as dilating the
A: You may have heard about esophageal dilation. Some neuromuscular
diseases affect the muscles of the esophagus enough to cause the food
bolus (chunk) not to travel down the esophagus well. Myotonic dystrophy
and polymyositis are examples of conditions that can do this. Also,
some muscle diseases can affect the smooth (involuntary) muscle of the
lower esophagus. Sometimes, in these conditions, dilating the esophagus
helps. Dilating the esophagus is not likely to help people who have
ALS, as their swallowing problems are in the mouth and the throat, rather
than the esophagus.
HARD TO SWALLOW by Phil Ivory
If you've ever gulped a cup of coffee while simultaneously searching
for car keys, packing lunch for a 5-year-old and giving directions over
the phone, you probably didn't notice that a miracle was occurring literally
underneath your nose. Swallowing is a seemingly simple but extraordinary
act, one we usually take for granted at least until something goes wrong
with the process. Dysphagia-which isn't a disease in itself but the medical
term for a disruption to the normal swallowing process-can lead to a number
of serious effects, some gradual and some that are immediately life- threatening.
Various diseases in the muscular dystrophy family have been known to cause
dysphagia, including the oculopharyngeal, myotonic, facioscapulohumeral
and limb-girdle forms and possibly Duchenne in its later stages. Dysphagia
is a common feature of amyotrophic lateral sclerosis (ALS) and occurs
in some of the spinal muscular atrophies as well as in polymyositis, myasthenia
gravis and Friedreich's ataxia. In some cases, swallowing difficulties
may be the first sign that a neuromuscular disease is present. Head injuries,
strokes and other conditions also may cause dysphagia.
AN EVERYDAY MIRACLE
Normal swallowing, although it seems to take place quickly and without
any special planning or conscious effort, is a complex, multistage process
requiring the seamless cooperation of both voluntary and involuntary
muscles. In the first stage, food matter, whether solid or liquid, is
introduced into the mouth and chewed, manipulated and consolidated into
a mass called the bolus. The lips, the tongue and the jaw each play
a part in controlling the bolus and moving it toward the region at the
back of the mouth called the pharynx. The pharynx gives way to two openings.
One goes into the esophagus, the tube leading to the stomach. The other
opens into the larynx and leads to the "windpipe," or trachea, which
delivers air to the lungs. Swallowing enters a critical phase here:
The aim is for all of the bolus to enter the esophagus and not the larynx.
Muscles in the pharynx contract and push the food down as a valve at
the top of the esophagus relaxes and opens. At the same time, the larynx
closes and rises to form a seal against a piece of tissue called the
epiglottis, momentarily cutting off the air supply and preventing any
matter from entering the lungs. As soon as the bolus has moved safely
into the esophagus, the airway reopens and breathing is allowed to resume.
Though complicated, this pharyngeal phase of swallowing may only take
a few seconds to get the bolus from the mouth to the esophagus. The
next part of the swallowing process, the esophageal phase, may be the
longest. The esophagus, a tube of muscle, relaxes at first to allow
the entry of the bolus. Then muscle contractions called peristaltic
waves push the bolus down the tube. These contractions are so efficient
that it's possible to defy gravity and swallow while standing on one's
head. Once the bolus passes through another valve at the bottom of the
esophagus and enters the stomach, the normal process of swallowing is
complete. An important but generally unnoticed function of normal swallowing
is the removal of secretions such as saliva and phlegm that can accumulate
in the mouth and the throat.
SERIOUS REPERCUSSIONS ARE POSSIBLE
Dysphagia can disrupt any or all stages of the swallowing process and,
in turn, can interfere with two vitally important body processes: nutrition
and respiration. Muscle weakness affecting the oral area (including
the tongue) can cause difficulty with such tasks as chewing, keeping
all the food in the mouth and moving the bolus to the back of the mouth.
In the pharyngeal stage, weakened muscle may lead to problems propelling
the bolus into the esophagus. Some particles may remain in crevices
in the pharynx, and can later fall into the airway. Muscle weakness
may also cause an incomplete covering of the entrance into the larynx.
Then coughing or choking results as unwanted material enters the larynx
and/or trachea. "With neuromuscular weakness, there is a generalized
slowing as well as diminished muscle force, which just throws everything
off," says Jeanne Thomson, who works with ALS patients at the Eleanor
and Lou Gehrig MDA/ALS Center at Columbia Presbyterian Medical Center
in New York. Thomson is a speech language pathologist (SLP), a professional
who focuses on speech and swallowing problems. Other professionals who
may be involved in evaluating swallowing problems may include a gastroenterologist
(an expert in the stomach and intestines) and an otolaryngologist (an
ear, nose and throat expert), as well as a neurologist. In a person
with neuromuscular slowing and weakness, solid matter or liquid (especially
liquid, because it travels more quickly) may reach the larynx before
the protective mechanisms have had time to take effect. If coughing
fails to dislodge a blockage in the trachea in order to free up the
airway, death can result. Those who care for a person affected by dysphagia
may wish to take a CPR or first aid course that includes instruction
on the Heimlich maneuver, a technique that, when done correctly, can
quickly clear the trachea of obstruction. Anyone can experience choking,
so this training is a good idea in general. If food, saliva or phlegm
enters the larynx without causing coughing or choking, it may then go
into the lungs. This event, called aspiration, can breed bacteria, which
can cause aspiration pneumonia. Like other forms of pneumonia, this
can be fought with antibiotics and may require hospitalization. "If
someone develops aspiration pneumonia and the immune system is weakened
to the point where they can't fight it, the person can die," Thomson
says. Food matter reaching the esophagus can get stuck there because
of weakness of the esophageal muscles or inefficient chewing in earlier
stages that leaves unmanageable particles. Although most people are
unaware of the esophageal stage of swallowing, people with dysphagia
may experience spasms as the muscles have to work extra hard to move
the bolus along. Food that gets stuck in the esophagus can sometimes
go back up, resulting in acid reflux (heartburn). In a person with dysphagia,
fatigue and muscle weakness, especially if they're coupled with breathing
problems while eating, can be so discouraging that the person pushes
his plate away at mealtime. Malnutrition and dehydration can result.
Dysphagia can also contribute to social isolation, since so many social
and family activities revolve around eating. As an added complication,
when malnutrition occurs, the body uses muscle as a source of energy
and protein, accelerating weakness.
SCOPING OUT THE PROBLEM
Weight loss may be one of the first signs that a swallowing problem
exists. Other signs of dysphagia include changes in voice quality after
eating, anxiety about eating, taking a longer time to finish meals,
frequent bouts of pneumonia, coughing, heartburn, drooling and discernible
tongue weakness. Some medications can contribute to dysphagia, so all
medication information should be shared with health care providers.
An evaluation done by an SLP at bedside or during mealtimes may provide
some insights as to what's going wrong, but it's not a reliable way
of determining if aspiration is taking place. A fiberoptic swallowing
study, in which a tiny camera descends through the nose and down the
patient's throat, may be useful in some cases, and is done by an otolaryngologist
in conjunction with an SLP. A full evaluation can highlight the point
at which swallowing goes awry and show where food particles are being
trapped and whether aspiration is occurring. This involves a modified
barium swallow, also called a videofluoroscopy. This X-ray study of
the patient swallowing various consistencies of food combined with liquid
barium is performed by an SLP in conjunction with a radiologist and
is captured on videotape. Afterward, the SLP and patient may examine
the videotape together to identify swallowing problems. "That's a very
personal thing, so it differs from person to person," Thomson says.
"Hopefully, the family will be there, too. We look at the point of breakdown
and see what needs to be done to accommodate it."
TREATMENT OPTIONS FOR DYSPHAGIA
In milder cases of dysphagia, the SLP may suggest muscle exercises
to help in the oral and pharyngeal phases, such as lip exercises and
strengthening exercises for the tongue. A number of swallowing techniques
may be useful. Consciously holding one's breath during swallowing, or
consciously looking at one's toes, are techniques that may reduce risk
of aspiration, depending on the individual case. Postural modifications
can sometimes help. If one side of the throat is weaker than the other,
a person can turn the head so food doesn't go down the weaker side.
Mealtime habits may have to be altered. When chewing becomes difficult,
taking small bites may be advisable. Having six small meals a day instead
of three large ones may be a good idea. People with dysphagia must take
in sufficient liquids to avoid dehydration, but liquids are likely to
cause aspiration, since they travel quickly down the throat. Commercial
thickeners are available to give liquids a more manageable consistency.
They're supposed to be tasteless, although, Thomson says, some patients
detect an unpleasant taste. There are also prethickened liquids available
that don't require any mixing. The SLP may also advise about the use
of medications or portable suction machines to deal with problems handling
saliva. Papaya juice or hot teas may be useful in reducing saliva thickness.
Thomson points out that people with ALS don't, in fact, produce excess
saliva. "They're making the same amount of saliva," she says. "But they're
not swallowing frequently enough or effectively enough to clear it."
In progressive conditions such as ALS, patients should be informed in
advance that the ability to swallow may deteriorate and that certain
food consistencies may become hard or impossible to manage. A nutritionist
should be consulted. Special cookbooks such as the MEALS book for ALS
which is available from MDA (see "Resources," below) can help caregivers
prepare foods that are palatable and pleasing to the eye as the patient
progresses from hard to soft consistencies.
If all other methods fail and the patient isn't getting sufficient
nutrition and hydration, a percutaneous gastrostomy tube (PEG), also
known as a feeding tube, may be necessary. Dr. Robert McMichael, a neurologist
and MDA clinic director in Arlington, Texas, believes that with diseases
such as ALS there are advantages to performing a PEG placement soon
after dysphagia symptoms appear. One reason is to stop the debilitating
effects of malnutrition. Also, the patient may have greater tolerance
for the procedure early in the disease process, before respiratory problems
have become advanced. Although it's possible for the procedure to be
done on an outpatient basis, McMichael likes to have patients stay in
the hospital a day or so before and after the procedure. This allows
him to correct dehydration and offer respiratory therapy before the
surgery, and gives him a chance to teach the patient and family how
to use the PEG after the tube is in place. The decision to get a PEG
is highly personal. Patients are understandably reluctant to undergo
an invasive procedure that bypasses the normal eating process, yet some
are ultimately relieved after the surgery and find they get some of
their strength back after receiving adequate nutrition again. There's
also a procedure to help control excessive saliva production, which
involves cutting the nerves to the major salivary glands. Another surgical
procedure that may be considered in some cases of dysphagia is the cricopharyngeal
myotomy, which involves cutting one of the muscles of the pharynx. This
muscle is meant to serve as a kind of gatekeeper as food passes from
the pharynx into the esophagus. However, if the muscle fails to relax
properly and allow food passage, it may become more of an impediment
than a help. In such cases, the muscle's surgical removal may cause
marked improvement in the ability to swallow.
RESOURCES FOR DEALING WITH DYSPHAGIA
The American Speech-Language-Hearing Association can help direct you to
an SLP. Write to ASHA Action Center, 10801 Rockville Pike, Rockville,
MD 20852; call (800) 638-TALK; or e-mail to firstname.lastname@example.org. Communication
Independence for the Neurologically Impaired (CINI) is a nonprofit organization
that serves as a resource for patients and professionals about communication
and swallowing problems. Write to CINI, 116 John St., Suite 1304, New
York, NY 10038; call (212)-385-8045; or go on-line at www.cini.org. CINI
offers a book called Communication and Swallowing Problems for the ALS/MND
Community: A CINI Manual. For people with ALS who're experiencing dysphagia,
MDA has prepared a cookbook called MEALS, which offers nourishing recipes
for easy-to-swallow foods. To obtain a copy, send a check for $6 made
payable to MDA, to MEALS Recipe Book, Muscular Dystrophy Association,
Publications Department, 3300 E. Sunrise Drive, Tucson, AZ 85718-3208.
It can also be ordered on MDA's Web site at www.mdausa.org. Precision
Foods offers various products for people with dysphagia, including starch-based
thickeners and fiber supplements. Call Precision Foods at (800) 333-0003
or go to www.precisionfoods.com on the Internet. The company also offers
free booklets about swallowing difficulties, including "Dysphagia: A Review
for Health Professionals." Menu Direct offers a variety of fully prepared
meals for people with dysphagia that arrive on your doorstep frozen and
ready for the microwave. Call (888) MENU123 or visit the Web site at www.menudirect.com.