Constipation in ALS
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 constipated.
Normally food is liquified 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 constipating.
- 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 bowel motility.
- 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
- 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 time.
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. For frequent or chronic constipation common to ALS
patients it is very important to begin with the mildest types. 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:
- 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 similarly.
- 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
- 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 ducosate 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 bowelin preparation for surgery or bowel
- The polymer type is a 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 laxatives.
- 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 Routine
- 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 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
- 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.