Although we joke about constipation, it is a miserable experience and should never be taken lightly in
the ALS patient. Loss of appetite from frequent constipation leads to weight loss, weakness and
dehydration. Constipation can progress to blockage in the intestines and nausea, vomiting, and abdominal
distension. (Vomiting is very dangerous for a person who cannot turn over when lying on his back because it
causes choking.) One early sign of blockage is often overlooked. Repeated small very loose or liquid stools
may be ignored or thought to be sufficient when they are actually the result of a large amount of hard
stool blocking the bowel with only liquid stool being able to pass around it. The blockage can become so
severe as to require hospitalization and possibly even surgery to correct.
What is constipation?
That may sound like a foolish question, but many people think of constipation as having infrequent,
dry, hard bowel movements. It is actually defined simply as having stools that are hard to pass. Many
people have only a couple of bowel movements a week, but if they do so without straining, they are not
Normally food is liquefied in the stomach by digestive juices and moves through the small intestine in
liquid form. Nutrients are absorbed in the small intestine. Waves of muscle contraction called peristalsis
moves the remainder along into the large intestine. In the large intestine, water is reabsorbed from the
left over waste product, leaving just fecal material (stool) which is moved along and passed out of the
body in a bowel movement.
Anything that changes the speed with which foods move through the large intestine interferes with the
re-absorption of water and causes problems. Rapid passage causes diarrhea, slowed passage allows too much
water to be reabsorbed, leaving hard, dry stool that doesn't move easily through the bowel. Common
causes in ALS patients include:
Many medications affect bowel function. Prescription pain medications are especially
Certain foods, a poor diet or changes in diet.
Constipation is very common in anyone with poor mobility because lack of activity and exercise slow
Long delays in getting to the bathroom further complicate the problem by keeping the stool in the
large intestine longer where it becomes drier and harder.
There is some evidence that ALS can affect the autonomic nervous system as well as skeletal muscle
and slow the entire digestive process.
In ALS swallowing problems make getting a good diet and sufficient fluids and fiber difficult and
the problem gets worse.
Breathing problems make it difficult to take a deep breath and bear down, something we don't
even realize is important in having a bowel movement until we cannot do it.
Because so many things contribute to constipation in the ALS patient, the solution may change over
How to Prevent or Treat Constipation
The first - and best - way to approach constipation is by improving your diet.
Drink lots of fluids.
Eat lots of high fiber foods. (Check with your doctor if you have other digestive or bowel
problems or are on a special diet.) There are many high fiber cereals available and granola
bars are convenient and easy to handle when feeding yourself begins to be difficult. Raw fruits
and vegetables are also easy to eat sources of fiber if swallowing is not a problem.
If you are using tube feeding, fiber is added to most tube feedings formulas. Check the
label to see if your brand has added fiber.
When diet alone isn't quite enough, try the old remedy of prunes or prune juice for
occasional constipation. It really does work!
There are many types of laxatives available without a prescription.
Everyone's bowel pattern is different. Very few people need to have a daily bowel movement.
Every other day or every third day is probably most common. Insisting on a daily bowel movement and
using laxatives to try to attain it is asking for trouble!
There are 5 basic types of laxatives. For the frequent or chronic constipation common to ALS
patients it is very important to begin with the mildest types, in this order:
Fiber laxatives supply the fiber necessary to add bulk which holds water and makes
it easier to move the stool through the bowels.
Today's over-processed foods are low in fiber to begin with and when swallowing
problems begin there is usually even less fiber in the diet.
Fiber laxatives are very slow acting and are taken daily to prevent constipation
rather than for relief of existing constipation.
Generally the first laxative recommended for frequent constipation, fiber laxatives
are also ideal for long term use because the fiber is not absorbed.
Two well known brands are Metamucil and Citrucel. Available without a prescription,
some use natural fiber (agar, psyllium, kelp and plant gum.) Others are synthetic
cellulose (methylcellulose). Natural and synthetic bulk-forming laxatives act
Fiber laxatives are available as a powder (which is mixed with water or juice and
generally needs to be swallowed fairly quickly before it thickens to a goo, though
newer brands without that problem are available.), a tablet, or a wafer.
It is possible to be allergic or sensitive to flavorings or other additives. Some
brands may also contain enough sugar as to cause problems for diabetics.
For the ALS patient there are two concerns with this type of laxative;
It is essential that fluid intake be very good. 8 ounces of fluid
must be taken immediately with each dose and more throughout the day is needed for safe, effective use. Taking fiber
laxatives without enough fluid can cause intestinal blockage.
They are not to be used when swallowing problems begin. Failure to
drink enough water to wash down the fiber might allow it to begin to swell in
the esophagus and this requires immediate medical attention. Fiber laxatives
can safely be given through a feeding tube, but the fiber needs to be promptly
followed by flushing the tube with water to prevent clogging.
Stool softeners, also called emollient laxatives, also keep the water content of
the stool higher which keeps it softer and allow it to move more easily through the
bowels. Stool softeners are often ideal for ALS patients. Not only do they help keep
the stool soft when fiber and fluid intake is difficult, but they also are very helpful
when breathing problems make it difficult to bear down and push. They do not cause
frequent bowel movements, cramping or urgency but greatly reduce the amount of
straining needed to have a bowel movement. Stool softeners are taken daily as a
preventive measure rather than to force a bowel movement on a certain day.
Stool softeners are available in pill or liquid form. Colace is the most commonly
prescribed stool softener, but there are many non-prescription brands of the active
ingredient, docusate, available, such as Surfak. Liquid docusate is also available
without prescription but the pharmacist will probably have to special order it for you
as it is seldom stocked by drug stores. (Note: liquid docusate needs to be diluted in
juice for drinking or it burns all the way down!!!!)
Hyperosmotic laxatives draw water into the bowel from surrounding
body tissues, softening the stool. There are three types of hyperosmolar laxatives.
The saline type is the most well known -- and disliked! Saline laxatives are harsh,
fast acting, and total in effect. They are primarily used to completely clear the bowel
in preparation for surgery or bowel exams.
The polymer type is a large molecule that causes water to be retained in the stool
to soften it and increase the number of bowel movements. It is not used long term.
Of the three types of hyperosmotic laxatives only one, lactulose, is useful for
preventing constipation. It's action is so much less rapid and harsh than the
saline that it is often used for long-term treatment of chronic constipation. Because
it has sugar-like properties it may not be suitable for diabetics. Lactulose is
available only by prescription.
Lubricants use mineral oil to coat the stool for easier
passage. Mineral oil should not be taken by patients with even the slightest swallowing
problem. Aspiration of oil into the lungs causes chemical pneumonia.
Stimulant Laxatives increase the muscle contractions (peristalsis) of the bowel
which moves the stool along. Most are intended to be fairly gentle and result in a
bowel movement within 6- 12 hours, but even these can cause cramping. If constipation
is already making you uncomfortable, stimulant suppositories will provide relief within
a hour but are likely to cause cramping.
Stimulant laxatives are not for continuous or long term use! Even in ALS, they
should be reserved for occasional use until other methods fail. Frequent use of
stimulant laxatives can actually aggravate constipation because the bowels become
dependent on them for the stimulation for even normal peristalsis. These laxatives work
by irritating intestinal nerve endings, which in turn stimulates muscle contractions
that move the irritant through the gut and out of the body. After a while the nerve
endings no longer respond to this mount of stimulation and larger doses are needed. For
long term ALS patients, after years of frequent use, the nerves of the colon slowly
disappear, the colon muscles wither, and the colon becomes dilated and unresponsive to
The majority of non-prescription laxatives are stimulants and contain senna, castor
oil, cascara, aloe, bisacodyl, or combinations. These laxatives are often marketed as
being safe, "natural" remedies because the active ingredients come from
plants. That makes them " natural" but does not make them safe, because like
many other plants, they are basically poisonous. That is why the body finds them
irritating and reacts so quickly to get rid of them.
Another medication sometimes ordered is Reglan. Reglan works primarily in the stomach to empty it
faster in order to reduce nausea, vomiting, or esophageal reflux. It's value in treating
constipation is minimal.
Enemas are the last resort as a routine method of bowel management. The
repeated distension of the bowel will eventually cause loss of bowel tone which aggravates the
problem. This "eventual" problem is not a concern for the ALS patient who does not plan
on going on a vent, but should be considered when planning a bowel program for long term use.
Establishing a Bowel Program
Very few people need to have a daily bowel movement. Every other day or third day is typical. Having a
routine time when you can spend a longer period of time on the toilet is helpful. Although choosing a time
is probably going to be more a matter of convenience for your caregiver, if you already have a certain time
of day you are more likely to have a bowel movement, try to arrange for that time.
If having a bowel movement at a consistent time of day is important because you want to leave home or
don't always have the necessary help to get to the toilet the rest of the day, you can encourage that
schedule. Begin by using a stimulant laxative suppository to promote bowel movements on the scheduled day
at the chosen time. After 2 weeks, use the suppository only if you can't have a bowel movement on your
own. Within a month, you should be able to reduce reduce the stimulant laxative use to infrequent.
An unrushed and private bathroom trip is ideal, but safety and security need to be assured. Having some
type of buzzer or doorbell type button (available from Radio Shack) to call for help works well. Arm rests
and a seat belt might be necessary for safety. (The correct and safe angle for a seat belt is diagonal as
they are in cars: The belt is around the hips and anchored lower. A belt anchored behind you at stomach
level will allow you to slide down through it and end up tight around your chest.) Sitting upright and as
comfortably as possible is also important. A padded toilet seat can be a life saver! Using a footstool will
help put you in the most natural position for a bowel movement, a squatting position. It really does make a
difference! Leaning forward over a pillow can help provide the necessary intra-abdominal pressure for
Drinking a cup of coffee or other hot beverage before or while in the bathroom will often help. Warm
water through a feeding tube works as well.