The following excerpt is taken from Chapter
4 of Life on Wheels: For the Active Wheelchair User, by Gary Karp,
copyright 1999, published by O'Reilly & Associates, Inc.
To order, or get more information about Gary's book, call
(800) 998-9938. Permission is granted to print and
distribute this excerpt for noncommercial use as long
as the above source is included. The information in this
article is meant to educate and should not be used as an
alternative for professional medical care.
The ability to evacuate your bowels and bladder depends on the particular
disability. For example, the ability depends on the level of a condition which
otherwise affects your nervous system, such as a brain injury, MS, or ALS; the
level of a spinal cord disability; or the strength of surrounding muscles of
the bladder, such as the urinary sphincter.
Normal, reflexive emptying happens when the bowels or bladder become full
and send a message to a particular area of the spinal cord. The message then
goes to the brain, which can send back the instruction to relax the sphincter
muscle or to hold on until later.
Injury or disease can interfere with this communication process. For
example, in a spinal cord injury, if the spinal cord is damaged above T12, the
message will reach the reflex arc, but not the brain. This is known as a reflex
or spastic bladder or bowel; you will not be able to control when they will
empty. If the cord obstruction is below L2, the message will not reach the cord
at all, and your body does not know it is time to respond. This is known as a
nonreflex or flaccid condition, sometimes referred to as a frozen bladder.
Management of these neurogenic conditions is central to the degree of
independence possible in your life. Tremendous amounts of time can be spent
dealing with your bowels and bladder. A poor bladder program can invite nearly
constant infections. Surgeries could become necessary, such as installation of
a suprapubic catheter through the abdomen, or cutting the sphincter muscle to
allow urine to flow. Hospital stays for severe infections can compromise your
independence and your ability to make commitments to a job.
A poor bowel program can allow constipation, making evacuation very
difficult. You might spend hours dealing with evoking a bowel movement,
inserting suppositories, stimulating the area, manually cleaning out the stool
with a gloved hand, or relying on a personal assistant to do so. For some,
bowel management unavoidably takes some time, but you have some control over
how much time it takes, depending on your habits and discipline. Severe
constipation, impaction, or diarrhea will certainly occupy your time.
A good bowel program starts with avoiding constipation and maintaining a
good consistency in your stool. When your feces becomes too dry and firm, not
only will you have more difficulty in emptying your bowels, but you are
allowing bacteria to remain in your body for a longer period of time. Bacteria
can multiply and become the cause of infections and other problems.
Firm stool is irritating to the colon and can cause hemorrhoids. It might
also require you to apply more aggressive manual stimulation in your bowel
program which can further irritate those delicate tissues. Diarrhea can be an
indication of constipation, since the runny stool can be from the water lost
from the fecal matter farther up the intestines. The more severe the diarrhea
becomes, the more likely you can become impacted. You need to drink more water
to replace the fluids lost with diarrhea.
Avoid becoming reliant on laxatives, which dull the nerves of the bowel and
compromise whatever reflex activity you might have retained. If you continue to
have chronic constipation, there might be another medical issue involved, and
you should see your doctor. Enemas are also a poor standard method. They
stretch the colon and compromise its tone. Your body can develop a dependency
on these measures if they are overused.
Diet plays an important role in managing stool softness. Before relying on
drugs to manage your bowels, start with food. Foods that prevent or cure
constipation include fluids, wheat bran, rice bran, vegetables, and
fruits--especially prunes, figs, and dates.
The advice you have heard for years is true: include fiber and bulk in your
diet. Fibrous food absorbs and retains water, keeping your stool at an
appropriate softness. Fiber remains in the intestines because it is not
digested, being too coarse to either be broken down by digestive enzymes or
absorbed into the body. Fiber helps stimulate the nerve reflexes in the colon
wall which trigger bowel movement. Fiber also reduces your chances of
developing hemorrhoids, varicose veins, or diverticulitis, which results from
the formation of small pockets in the intestines where stool becomes trapped,
allowing bacteria to grow.
Fiber can be overdone. Add fiber gradually, making note of how it affects
your stool, and work your way up to a consistent level, allowing the body to
adapt. Because fiber absorbs water, you must increase fluid intake as you
increase bulk in your diet. Too much fiber without enough fluid can cause hard
stools--and eventually impaction. Diuretic medicines, designed to remove fluid
from the body, will also affect the amount of fiber you can accommodate.
The modern diet in general is much lower in fiber than in the past. To add
fiber to your diet, choose whole grain, coarse breads, or use a bread machine
to make high-fiber breads. Miller's bran and rice bran are available in
powdered form to sprinkle on cereals, salads, and other creative alternatives.
Whole fresh fruits and vegetables provide bulk and fiber.
The age-old belief in prunes is true. Prunes are high in fiber and Vitamin
A, have no cholesterol or fat, and have a laxative effect. A glass of prune
juice each day can help manage your bowels. Or keep a supply of pitted prunes
around to pop one in your mouth now and then during the day.
Don't use coffee as a tool to manage your bowels or health. For some people,
a cup of coffee has a laxative effect, but not because of the caffeine, which
can be a cause of constipation. If you have chronic problems, either with
constipation or diarrhea, look at your coffee habits. Too much coffee also
Dairy foods, by virtue of their calcium content, contribute to constipation.
Milk should not be too large a part of your diet.
Medications influence your diet and how you process foods. Ask your
physician how drugs he prescribes for you will affect your stool consistency
and bowel program.
Most of you will have received guidance in a rehabilitation program or been
advised by your physician on what bowel and bladder management program will
work best for you. However, sometimes a doctor or program will simply apply a
given model that doesn't take individual abilities and needs into account.
Experience will show what your individual capabilities are and guide you in
determining the best management program. Many brain or spinal cord
traumas--whether from injury, infection, birth defect, or disease--are not
complete, so some messages from the nerves might be getting through. Although
you might be diagnosed as having no control or sensation, you might retain some
manual control of the sphincter muscles or have some capacity to sense when
your bowel or bladder is full.
Rehab had me use a leg bag attached to a condom to continuously collect drips
from my weak bladder. I found that I had enough control to only need to put a
cap in the condom, assuming I used the bathroom before my bladder would fill.
That is when I experience involuntary urination. This continues to surprise
doctors, given my level of spinal cord injury.
A neurogenic bladder has a difficult time emptying itself completely. Urine
left behind in the bladder will stagnate and cause infection. A very full
bladder eventually backs up into the kidneys, disrupting the important
filtration task they perform, and leading to infection and disease.
You must drink plenty of water, as much as three quarts per day or a glass
every hour. All of this fresh fluid keeps flushing you out, and reduces the
risk of bacteria remaining in place long enough to cause trouble. But chair
users face a contradiction in drinking extra fluids. For many chair riders,
using the bathroom is time consuming, and involves a lot of mechanical or
physical effort. You must find a balance for yourself, putting a priority on
your safety and health, while reducing inconvenience.
I was avoiding going to the bathroom because I didn't want to have to do all
the work of getting my pants off and back on. I have some control, but it is
not a reflex. That means I have to push continuously to urinate, and it can be
tiring. But I discovered that I wasn't drinking enough and so got infections
more often. Or else I would delay going, and my external catheter would slip
and get me all wet. Now I know I have to drink enough. I do my best to stay
calm in the bathroom and do the whole routine with the least possible strain.
It turns out I didn't have to push as hard to urinate after
With a flaccid bladder, some ability is lost to know when it is time to
empty. The bladder cannot develop enough pressure to overcome the resistance of
the sphincter muscle, so urine is held in. If the bladder fills too much, it
begins to stretch, known as "overdistention," and urine begins to
back into the kidneys. Remaining muscle tone will be damaged, and what bladder
function you have can be lost. Since your body is not giving you the sensations
to know when these events are happening, you must practice a regular bladder
program and be very conscious of how much fluid you take into your body and how
it determines when you need to void.
It might be possible to empty a flaccid bladder if you use the
Credé technique--pressing against your bladder with your fist
to overcome the resistance of the sphincter. Discuss this method with your
doctor to ensure that it is safe for you. This technique is likely to leave
behind residual urine, but depending on your fluid intake this does not have to
be a problem. It might be necessary on occasion to catheterize yourself.
A spastic bladder might try to void itself at any time; the amount can be
small, leaving behind residual urine. The reflex is most likely when the
bladder is full, but can also be triggered by contractions from muscle
spasticity in your legs, if that is an issue for you. Spasms in the bladder
will increase with the presence of an infection or stones. The spastic bladder
can be triggered by massaging the abdomen, by leaning forward or doing pushups
from the sitting position, or by stimulating the rectum with a gloved finger.
Once the reflex begins, it will continue so you need either to be sitting on a
toilet or commode or have an appropriate collection system in place. Many women
rely on medication, urine absorbing pads or, as a last resort, bladder
With either a flaccid or spastic bladder, you will want to limit your fluid
intake in the evening to reduce your need for emptying during the night.
Catheters are used to empty the bladder. A catheter is a narrow tube
inserted through the urethra, beyond the sphincter muscle, and into the
bladder, allowing it to drain. There are two kinds of catheterization,
indwelling and intermittent. Which kind you use depends on the bladder
condition you have and other considerations such as convenience, lifestyle, and
cost. An indwelling catheter is usually attached to a drainage bag which straps
onto the leg and collects urine. With intermittent catheterization, urine is
emptied into a plastic urinal or container or directly into a standard
A flaccid bladder typically must be emptied with an indwelling catheter,
since the sphincter muscle is frozen and cannot be relaxed consciously. A
spastic bladder might not be capable of emptying itself completely, so
occasional use of a catheter might be necessary to remove residual urine. Males
with spastic bladders or some control of the urinary sphincter can often manage
well with male urinary condoms.
This woman who uses intermittent catheterization describes her routine:
I prefer to cath in bed, because it's easier for me to pull my pants up and
down. I do clean cath, I don't do sterile. I don't use gloves or Betadyne. I
boil my catheters to clean them. I use a mirror which makes it easier for me to
find the spot. I don't want to be poking around because I'm so prone to UTIs
[urinary tract infections], and I don't want to chance causing
Catheters come in various sizes, identified in French units, which indicate
the outside circumference--16 and 18 Fr. are common sizes. The overall size
does not indicate the size of the inside channel, so it is important to learn
more about the design of the product you choose. You might want to cut open a
used catheter to become familiar with its design. The size of the inside
channel will determine how quickly the catheter might become clogged. A larger
catheter is not always a good solution, as it can still plug up and cause
complications in the urethra.
Catheters are made of latex or silicone. Some latex catheters are coated
with Teflon to ease their passage. However, latex catheters will generally be
smaller inside because of the extra surface layer. Some people develop latex
sensitivity and so must use the more costly silicone type.
Either intermittent or indwelling catheters entail a risk of chronic
Indwelling or Foley catheters
An indwelling or Foley catheter remains in place for up to a month, allowing
the bladder to empty continuously into a leg or bedside drainage bag.
Indwelling catheters include a small balloon at the internal end which is
filled with water and keeps the catheter from pulling out. An indwelling
catheter is also the solution for quadriplegics who cannot perform intermittent
catheterization for lack of hand dexterity.
A suprapubic catheter is a type of indwelling catheter inserted surgically
through the abdomen into the bladder because of conditions that prevent entry
through the urethra. Some people experience leakage around the opening where
the catheter enters. There is a chance of having to relocate a suprapubic
catheter after some years; the previous opening could take a while to close,
leaving you to deal with leaking from the opening until it heals.
With indwelling and suprapubic catheters, there is an increased risk of
infection from the continuing presence of a foreign object in the body.
Catheters can become clogged in time if the urine contains sediment or is
cloudy from a persistent infection.
Indwelling and suprapubic catheters empty the bladder continuously. As a
result, the bladder shrinks and loses muscle tone. Eventually, bladder walls
can become firm. Carefully consider whether to go ahead with either of these
two options, since they can result in a change to your bladder which might not
be reversible. Consult with your physician on the reasons to use them. Despite
these permanent changes, one of these options might be the right thing for you
to do. In particular, those without the hand dexterity for self-catheterization
benefit from continuous drainage. The logistics of getting assistance or the
difficulty of trying to do it alone when it challenges your ability might not
be worth the effort to avoid the possible complications. If you will continue
to use an indwelling approach, a smaller bladder might not matter to you.
Spasms can cause leakage around a catheter, since the strength of the
muscular contraction may force more urine into the tube than it can
accommodate. The excess will flow around the tube instead. Some spasms can be
powerful enough to force out an indwelling catheter even with its balloon
inflated, which can stretch the bladder and cause damage to the urethra. This
is more of an issue for women, whose urethras are shorter than in men. There
are two commonly recommended anti-cholinergic medications for this problem,
Probanthine and Ditropan, which relax the bladder to minimize spasms.
If you are having to change your catheter more often than usual, take time
to find out why. Not drinking enough fluid is the most common reason for a
catheter to become prematurely clogged. Water is the best fluid to drink. Tea,
lemonade, and fruit juices are also good. Cranberry juice has long been thought
to be healthy for the bladder and even part of a treatment program for
infections, although there is no hard research to support it. Do not choose
products that rely heavily on sugar, corn syrup, or artificial flavors and
A clogged catheter might also be an indication that you are developing
stones. Stones do not develop when your urine maintains a sufficient acid
level, rather than becoming too alkaline. Carbonated drinks and certain foods
make the urine more alkaline, noticeable by a stronger odor. The best way to
get your urine back to an acid level is simply to drink more water. You can
test this yourself with pH paper found at any pharmacy. A good pH level is from
5 to 6.5.
With intermittent catheterization, you insert a catheter when it is time to
empty the bladder, performing the process several times per day. A nurse or
therapist trains you in the proper techniques for self-catheterization. In the
hospital, a fresh catheter is used each time. After discharge, the same
catheter can be reused, assuming you practice very clean habits. If you use
intermittent catheters, you would carry catheters and supplies for cleaning;
these can be carried in a pack on the back of your wheelchair.
Historically, bladder catheterization programs have been based on a time
model. Such a program encouraged you to empty your bladder every four to six
hours. At times there would be a small amount of urine, meaning that the
invasion of a catheter was an unnecessary act. In that interval between
catheterizations, the bladder might also have become very full and distended,
an even more undesirable state. Without sensation, there was no way to know how
full the bladder was.
There are new catheterization products being developed. For example,
Diagnostic Ultrasound Corporation has released a product based on
volume-dependent catheterization. The BladderManager PCI 5000 is an ultrasound
device which can be worn continuously and can warn you when your bladder
reaches a selected percentage of fullness. The company's research found that 67
percent of timed intermittent catheterizations were performed prematurely and
16 percent were performed too late. The BladderManager is promoted as a means
to limit infections, upper urinary tract damage, and costs for healthcare and
The O'Neil catheter is designed to limit urinary tract infections. It is a
catheter already placed inside a sterile collection bag. The special tip is
first inserted into the opening of the urethra. The manufacturer claims that
its opening goes beyond the area where bacteria is most likely to invade. The
sterile catheter is then extended from inside the drainage bag, and enters the
urethra beyond the entry tip, supposedly bypassing the place where it could
pick up bacteria from the urethral opening and carry it into the bladder.
O'Neil catheters are portable and the integrated drainage bag is convenient.
The company claims that it reduces the incidence of UTIs considerably. O'Neil
catheters are a single-use product and cost more per unit. Such catheters might
be insured by your private insurance carrier or Medicare/Medicaid.
Intermittent catheterization can be more costly than an indwelling catheter
if you rely on additional personal assistance services to change them. Dr. Alex
Barchuk of the Kentfield Rehabilitation Hospital in California observes:
The difference in cost for a high quadriplegic on intermittent catheterization
versus having an indwelling catheter is unbelievable. It's almost triple the
cost of an indwelling catheter because someone who can't catheterize himself
has to have either an attendant or a nurse. You have to have someone around
every four to six hours to do it, which costs a lot of money. If you don't have
the attendant--or if the attendant doesn't show up, which happens a lot--you
have to go through an agency. An agency costs $35 an hour for a nurse to come
out and do the catheterization. The cost difference is
For someone with sufficient hand dexterity to do the intermittent procedure
themselves, the cost might not be a concern, particularly with good insurance
Many men with spastic bladders or a degree of manual control of the urinary
sphincter can manage well with a male urinary condom, also known as an external
catheter. Men using condoms will need to catheterize only occasionally, if at
all, to remove residual urine. The condom is changed or reapplied at least once
a day to provide the skin a chance to breathe and be inspected for irritation.
It is a good general practice to swab the penis for hygienic reasons.
There are three types of male urinary condoms:
- The Texas catheter is held in place with an external strap, either of
sticky foam or with a Velcro tab at the end. The strap must be applied
carefully. If it is too loose, the catheter will leak. If it is too tight, the
skin of the penis can become irritated or break into a sore.
- Another design uses a two-sided sticky foam strap which is first applied to
the penis, and then adheres to the condom as it is rolled over the strap.
- The third type is self-adhesive and adheres as it is rolled onto the
Some urinary condoms are supplied with a small pad of skin protector. The
skin protector is also available as a separate product you can order from a
medical supply store or catalog.
Condoms are typically made of latex. Some men develop latex sensitivity, in
which the skin of the penis becomes dry, red, and irritated.
My latex sensitivity appeared twenty years after my injury. At first I thought
the condoms I used were defective, but instead I needed to switch to the
silicone condom which is available only in the self-adhesive
Urinary condoms come out of the package rolled up, just as with condoms for
sexual use, although they include a tubed end for drainage of urine. The tube
might be an extension of the material of the condom or a separate plastic tube
attached at the end of a latex catheter. Urinary condoms come in several sizes,
and the latex type are flexible enough to accommodate the changes in size that
some men experience throughout the day.
When a man has severe ongoing problems with bladder infections and other
complications, a urologist might recommend a sphincterotomy. Surgeons cut the
sphincter muscle and release its capacity to keep the bladder closed. The
bladder empties continuously, and a condom and leg bag system collect the
urine. This very invasive procedure should be considered a last resort. Take
care not to allow your physician to overly influence you. Consider him a
provider of information. Take time to understand the full implications of such
a measure, talking to others who have been through it. A sphincterotomy is not
A study reported in the Archives of Physical Medicine and
An ineffective bowel program affects virtually every aspect of the patient's
life, including physical, psychological, social, vocational, and sexual goals,
as well as the ability to maintain an activity level, functional independence,
and social interactions.1
Your body systems can run your life, unless you take control and establish
regular habits to make your bowel routine predictable and manageable.
If you don't have a movement every day, this does not indicate constipation.
It can be normal to have a bowel movement every two to three days. What counts
is that you have a routine and that you manage your stool consistency. You need
to establish a pattern in a managed bowel program that depends on what kind of
neurogenic bowel you have. Evacuate your bowels often enough to ensure you do
not become impacted, yet not so often that you unnecessarily disrupt your
schedule or risk the health of the tissues of the rectum and colon. Without an
effective bowel program, some people can eventually require a colostomy after
falling into patterns of constipation and impaction.
The less your nervous system allows you control of the sphincter muscles,
the more you need to train it to prepare for defecation at a time when you can
control and induce it by the use of one or more following techniques:
- Digital stimulation. Gentle massage of the area around the anal
sphincter muscle encourages it to relax.
- Manual removal. Wearing a latex glove, stool is gently scooped out
with a finger by yourself or a personal assistant.
- Suppositories. The two types are Dulcolax suppositories, which work
by stimulating the nerve endings in the rectum, causing the bowel to contract,
and glycerin suppositories, which draw water into the stool to stimulate
evacuation. Overuse of suppositories or laxatives can cause deterioration of
the tissue in the colon.
- Mini-enema. Softens, lubricates, and draws water into the
A program which relies on the aid of suppositories or enemas can take from
thirty to sixty minutes to complete. In a 1997 study of 100 people with spinal
cord injuries, 23 percent of them took more than forty-five minutes with their
bowel program.2 Some of that time might
be spent lying down waiting for the treatments to have their effect. You will
develop a sense of when you would need to be on the toilet, though a protective
bed pad is always a good precaution.
If you have sufficient balance to sit on a toilet or commode chair, gravity
can help you along. Many people with high quadriplegia are unable to be stable
sitting on a toilet or commode for a bowel program, so it must be performed by
an assistant while lying down.
If you can push on your own, that is certainly more attractive than having
to put on a glove and dig, or sit waiting for a suppository to act. If you have
some manual control of the anal sphincter, beware of the inclination to push
continuously to force the feces out. It seems reasonable to think that since
the muscle is weakened you have to make up for it with more effort, but such a
strategy is exhausting and stressful. The rectum actually works somewhat on its
own. If you can make a contraction, you will achieve more effect by alternately
pushing down and relaxing. Alternately pushing and relaxing allows the natural
reflex of these muscles to work with you, and you will find that stool will
evacuate more easily.
Take care not to irritate the delicate lining of the rectum, which can cause
bleeding or development of hemorrhoids. Emphasize this with any personal
assistant who aids you with your program.
While I was in rehab, I remember a nurse's aide who seemed to be pretty rough
doing my bowel program before I had been taught to do it myself. And then I
noticed blood on her glove. I bled almost every time I moved my bowels for
years, until I finally had hemorrhoid surgery to correct it.
- S. Kirshblum, M.D., et al., "Bowel Care Practices in Chronic Spinal Cord
Injury Patients," Archives of Physical Medicine and Rehabilitation 79,
no. 1: 20.
- Kirshblum, "Bowel Care Practices," 20.