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CHAPTER 25

Urine and Bowel Management


With Spinal Cord Injury and Spina Bifida
Most persons with spinal cord injury or spina bifida do not have normal bladder or
bowel control (control for peeing and shitting). This loss of control can be
inconvenient, embarrassing, and cause social and emotional difficulties. Also, the loss
of control can cause skin problems and dangerous urinary infections. For these
reasons, it is important to learn ways to stay clean, dry, and healthy. Most of the
methods are not difficult, so children should be able to do it themselves. This will help
them feel more self-reliant.
URINE MANAGEMENT
The main goals of urine management are:
1. to prevent urinary infection, and
2. self-care in staying as dry as possible.
Prevention of urinary infection is extremely important. Infections of the urinary
system (bladder and kidneys) are very common in both spinal cord injury and
spina bifida, and are one of the main causes of early death. Therefore, any method
used for self-care or staying dry must also help prevent urinary infections. Make every
effort to prevent germs from getting into the bladder. Keeping clean is essential.
Also, it is important to empty the bladder regularly as completely as possible. If some
urine stays in the bladder, bacteria will grow in it and cause infection.
The ideal method of urine control empties the bladder completely and in a clean,
regular, easy, and self-reliant way.

Different methods work best for different persons-depending mostly on what 'type' of
bladder a person has. We discuss this on the next page.

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'Types' of bladder-in persons whose feeling and control have been partly
or completely lost.
AUTOMATIC BLADDER: A person with paralysis whose legs have 'reflex spasms'
(uncontrolled stiffening or jerking) usually also has reflex spasms in his bladder. As
the bladder fills with urine, the wails of the bladder stretch and cause a reflex spasm.
As the bladder squeezes, the muscles that hold back the urine relax, letting the urine
flow out. This is called an 'automatic bladder' because it empties automatically when
it gets full.
LIMP BLADDER (flaccid bladder): When a person's paralyzed legs are limp and do
not have spasms, usually the bladder is also limp, or flaccid. No matter how much
urine fills the bladder, it will not squeeze to empty. The bladder stretches until it
cannot hold any more and the urine begins to drip out. The bladder does not
completely empty this way. Some urine stays in the bladder, increasing the chance of
infection.
The most simple methods of bladder management work well with an automatic
bladder but do not work with a limp bladder. So try to figure out which type of
bladder a child has.
For the first few days or weeks after the spinal cord has been injured, the bladder is
almost always limp. Urine either drips out or does not come out at all. Then, as the
'spinal shock' wears off, persons with higher back injuries (above the 2nd lumbar
vertebra, see Page 176) usually develop automatic bladders. In persons with lower
back injuries, the bladder usually stays limp.
During the first weeks, usually a 'Foley catheter' is kept in the bladder all the time.
However, after about 2 weeks, it is a good idea to test how the bladder works by
removing the catheter and trying one of the methods described in this chapter. If the
person is often wet, try another method for that type of bladder.
A catheter is a flexible rubber tube used for draining urine out of the bladder.
A 'Foley' catheter has a small balloon near the tip. This balloon is filled with
water when it is inside the bladder, so that it can be left inside and will not slip
out.
Water is injected into the balloon here.
Urine drains out here.
For instructions on how to use a catheter, see Page 206
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Methods for automatic bladder
1. TRIGGERING: This method usually causes the bladder-emptying reflex to work
when the person is ready to pee. It can be done using a urinal, toilet, potty or jar. This
is the first method to try because nothing is put into the bladder. It is easy, so a child
can do it alone.

• Tap the lower belly (over the bladder) firmly with


your hand for about 1 minute. Stop and wait for the urine to
come.
• Tap again. Repeat several times until no more urine f
lows.
If possible, once a week after triggering use a catheter to
see how much urine is left. If there is less than a cupful
(150 cc), continue the triggering program. It there is more
than a cupful on several occasions, then the bladder is not
emptying well enough. Try another method.

2. PERIODIC USE OF A CATHETER: This method


allows the bladder to be emptied completely before
becoming too full. Sometimes it can be used to prepare the
body for triggering. Put a clean or sterile standard catheter
into the bladder every 4 to 6 hours to empty the urine.

For instructions
on how to put in a catheter, see the next page.
CAUTION: If you drink more liquid than usual, put
in the catheter more frequently to keep the bladder
from stretching too much.
Note: To reduce risk of urinary infections, regular frequent use of the catheter is
more important than using a sterile catheter. It is a mistake to stop using the
catheter only because you don't have a chance to boil it (for example, when traveling,
or at school). Just wash out the catheter with clean drinkable water after use, and keep
it in a clean jar or towel. (Do not go too long without catheterizing, and do not stop
catheterizing altogether.) It is important for your bladder not to interrupt your
program.
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How to put in a catheter
Health workers and parents can easily be taught to put in a catheter. With a little
practice, paraplegic and some quadriplegic children can also learn.
Note: The best catheter size is usually from #8 or #10 for a small child to #14 or #16
for a large child.
Note: The great care with cleanliness shown here (boiling the catheter,
wearing gloves) is important when using a fixed (Foley) catheter. However,
for periodic use of a regular catheter, a clean rather than sterile technique is
more practical (and therefore may be safer). Wash the catheter well with
clean water after each use and keep it in a clean container. Wash your
hands well before using it. See note on Page 205.

1. If possible boil the catheter (and


any syringe or instrument you may
2. Bathe well (at least daily). Wash well
be using) for 15 minutes, or at least
under foreskin or between vaginal lips and
wash them well and keep them
surrounding areas.
clean.

4. Put very clean cloths under and around


the area..

3. Wash hands with soap. After


washing touch only things that are
sterile or very clean.

5. Put on sterile gloves-or rub hands 6. Cover the catheter with a lubricant
well with alcohol or surgical soap. (slippery cream) 1ike K- Y Jelly that
dissolves in water (not oil or Vaseline).

7. Pull back foreskin or open the 8. Holding the lips open or the foreskin
vaginal lips, back, gently put the catheter into the urine
hole. Twist it as necessary but DO NOT
FORCE IT.

Hold the penis straight at this angle.


and wipe the urine opening with a
sterile cotton soaked with surgical
soap.
9. Push the catheter in until urine
starts coming out- then 3 cm. more.
10A. If using a regular catheter, each time
you pee tighten your stomach muscles or
gently massage the lower belly to empty
all urine. Then take out the catheter, wash
it well, boil it, and store it in a clean jar or
towel.

To avoid infections when using a catheter, it is important to be very clean


and to use only a catheter that is sterile, boiled, or very clean.

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3. FOLEY CATHETER (fixed catheter): With this method, the catheter is left in all
the time to drain the urine from the bladder continuously. A Foley is often used
immediately after injury, and in some cases, for many months or years. The catheter
connects to a collection bag that can be attached to the leg and worn under the clothes.
In many areas this is the easiest method because other supplies are difficult to get.
However, a Foley can cause many problems, including:
• Bacteria can get into the bladder, causing a high risk of infection.
• Continuous bladder irritation can cause bladder stones to form.
• The catheter may cause a sore on the underside of the penis through which
urine leaks. This may need surgery to correct.
If you have tried other methods unsuccessfully or no other equipment is available, a
Foley catheter may be the only choice. To prevent complications it is very important
that it be used carefully:
• Always wash your hands well before touching the catheter.
• Clean the skin around the catheter with soap and water at least twice a day and
after each bowel movement.
• Do not disconnect the collection bag except to empty and wash it. Wash it out
with soap or bleach (Clorox) and water once a day.
• If the catheter must be clamped, use a sterile plug, never a glass ampule (small
bottle). It may break and cause injury.
• Keep the collection bag below the level of the bladder to keep the urine from
flowing back.
• Tape the catheter to the leg when in a wheelchair. Boys should tape the catheter
on belly when lying down.
• Check regularly to make sure the urine is emptying and that the catheter is not
plugged up. Avoid sharp bends or folds in the tubing.
• When turning, lifting, or moving the person, remember to move the bag too. Do
not let it pull at the catheter or stay under the person.
• If the catheter gets plugged up, take it out, squirt boiled water through it, and
put it back. Or use a new one. In emergencies, you can squirt a little (cool)
boiled water back through the catheter while it is in place. Use a sterile or very
clean syringe
4. CONDOM CATHETER: This is a practical method for men and boys who cannot
control their urine. It can be used in combination with triggering, to avoid accidental
wetting.
A condom catheter is a thin rubber bag that fits over the penis. It has a tube that
connects to a collection bag. They come in different sizes.
If condom catheters are too costly or not available, a regular condom ('rubber',
'sheath', or ' prophylactic' for family planning) can be attached to the collection tube
with a rubber band or tape.
Or a thin, very clean plastic bag can be used. Or, on a child, use the finger of a rubber
glove (or a 'fingercot').
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To hold the condom on the penis, a special very stretchy adhesive tape can be used as
shown in this series of drawings.
How to put on a condom using Con-stay tape
Warning: Use only Con-stay or another easily
stretchable adhesive tape. (Ordinary adhesive
tape can stop blood flow when the penis swells.)

2.
1. Pull back skin.
Cut off hair. Wash with soap and water and
dry well.
4. Pull foreskin forward over
head of penis.

3.
Apply 'skin prep' (tincture of benzoin) to help
condom stick to skin.
5.
Loosely wrap Con-stay tape around condom so it 6.
sticks to itself. Roll the condom back over the
tape.

7.
Add a second strip of tape, ½ on the condom and
½ on the skin. 8.
Cut off the rubber rim.

9.
Connect condom to leg bag.

One of the safest and cheapest ways to hold a condom on the penis is to cut a ring out
of soft foam rubber. Pass the condom under the ring and turn it back over it.
The ring can be used again and again. So can the condoms if they are carefully
washed.
IMPORTANT PRECAUTIONS FOR CONDOM USE:
• Be sure it is not too tight-it could stop blood flow and severely harm the penis.
Avoid non-stretch tape.
• If the penis has erections (gets hard and bigger), try to put on the condom when
it is big.
• Remove the condom once a day and wash the penis well.
• If possible, remove it at night. Use a bottle or urinal to catch the urine.
• Check the condom and penis often to be sure everything is all right.
• If the penis becomes injured, swollen, or looks sore, remove the condom until
the penis is healthy.

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Methods for the limp bladder
If the person's bladder is limp (flaccid), it never empties by reflex. The bladder will
constantly have urine sitting in it unless an effective emptying method is used.
Boys:
1. Put in a regular catheter every 4 to 6 hours to empty the bladder. Between
catheter use, the boy can put on a condom to catch any leaking urine, as
described on Page 208.
2. A Foley catheter can be used, but may lead to problems (see Page 207).
3. Other alternatives include a surgical operation, which allows the urine to come
out through a small opening on the belly into a bag. Or a special catheter is put
into the bladder through a small hole in the lower belly.
Girls:
1. They can use a Foley catheter. This is often the simplest method, but can lead
to urinary infections.
2. Or try an 'intermittent' (in and out) program, using a regular catheter every 4-6
hours. If there is leaking in between catheter times, use diapers, rags, or a thick
sanitary pad to catch the urine. Change them often and wash often to protect the
skin and prevent sores.
3. The surgical procedures mentioned for boys can also be done in girls.
OTHER SUGGESTIONS FOR THE LIMP BLADDER-BOTH SEXES
• The push method:

Push down over the bladder with Or put a fist over the lower belly and gently
the hands. press it by bending forward.
Or strain to push urine out by
tightening the stomach muscles.
This method is recommended by many professionals, but it can cause problems. If the
muscles do not relax to let the urine out, pushing on the bladder can force urine back
into the kidneys-causing kidney infection and damage. Therefore, the push method
should only be used if the urine comes out easily with gentle pressure-or if there
is no other way possible.
• With boys with a limp bladder, the condom method can be used. But it is best
to also use a regular catheter at least 3 times a day. This is because the bladder
does not empty completely, which makes infection more likely.

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URINARY INFECTIONS
Persons with spinal cord injury or spina bifida have a high risk of urinary (bladder)
infections, for the reasons we have discussed. Long-term or untreated infections and
kidney problems are a common cause of early death. Preventive measures are
essential (see the bottom of the next page); but even when precautions are taken, some
urinary infections are still likely to happen. Therefore, it is very important to
recognize the signs and provide effective treatment.

Signs
When a person who has normal feeling has a urine infection, it burns when he pees.
The person with spinal cord damage may not feel this burning and therefore has to use
other signs to know when he has an infection. He may learn to recognize certain
unpleasant feelings, or may only know that he does not feel as healthy as usual.
Parents and health workers should learn to listen to the child and be aware of changes
in behavior or other signs that might mean that he has an infection.
Possible urinary signs
• cloudy urine, possibly with pieces of mucus, pus, or blood specks
• dark or red urine
• strong or bad smelling urine
• increased bladder spasms (cramps)
• increased wetting or changes in bladder function
• pain in the mid-back (kidneys) or side (urine tubes)
Possible other signs
• body aches
• general discomfort
• increased muscle spasms
• fever
• dysreflexia (headache, goosebumps when sweating, high blood pressure, see
Page 187.)

Treatment
At t he first signs of infection, drink even more water than usual. Antibiotics
(medicines that fight bacteria) may also be necessary. But avoid frequent use of
antibiotics because they may become less effective (bacteria may become resistant).
If a person has had urinary infections before, he can start with the last medicine that
was effective. If not ...
• Start with one of the medicines in Group 1 on the next page. If after 2 days
the person is still getting worse, try another medicine in Group 1.
• If that does not help, try one of the medicines in Group 2.
• If none of the medicines of Group 2 help, take the person to a medical
laboratory for a 'culture' and 'sensitivity test' of the urine.
• If that is not possible, try a medicine in Group 3. If possible, consult a specialist
in urinary problems.
If a medicine seems to help, continue taking it for at least a week, or for 4 days after
the last signs have disappeared. Do not change from one medicine to another unless
the medicine is not working or causes serious side effects.
CAUTION: Many of these medicines sometimes cause serious side effects. Find out
about their risks and precautions before using them.
* The medicines marked with a star (*) can cause kidney damage unless the person
drinks lots of water.
Be sure to give the medication in the correct dosage.

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TREATMENT FOR URINARY INFECTIONS
• Drink lots of liquid-adults, at least 2 liters (8 glasses) a day.
• Eat apples, grapes, or cranberries-or drink their juices-or take vitamin C tablets
to make urine more acid. Bacteria grow with more difficulty in acid urine.
(Note: Orange or lemon juice and other citrus fruits and juices do not work! They
make the urine less acid.)
• Keep hands, catheter, and collection bags very clean before, during, and after
your bladder program.
• Do not lie in bed all day. Stay active.
• Do not clamp the Foley catheter or plug it with anything - unless absolutely
necessary - then use a sterile plug.
• Stick to your bladder program. Do not allow urine to sit in bladder
• Do not let the catheter get bent or twisted so that urine cannot come out.
• If using a standard catheter periodically, be sure to put it in regularly, at least
every 4 to 6 hours. To prevent infections, frequency of catheter use is even
more important than cleanliness. It is safer to put in the catheter without boiling
it, than not to put it in. If infections are common, catheterize more often.
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BOWEL MANAGEMENT IN SPINAL CORD INJURY AND
SPINA BIFIDA
When there is damage to the spinal cord, almost always a person loses control over
when he will have a bowel movement (pass stool or shit). This makes it hard to stay
clean, which can be inconvenient or embarrassing. Although he can never get back
complete control over the muscles that hold in or push out the stool, a person can
learn to help the stool come out, with assistance, at certain times of day. This
kind of 'bowel program' can greatly increase the person's self-confidence and
freedom for school, work, and social activities.
Persons with spinal cord damage also often have problems with constipation, or the
formation of hard stools that may wait days before coming out. Some constipation can
be an advantage when a person lacks bowel control. But sometimes it can lead to
serious problems, such as impaction (see Page 214) or dysreflexia (see Page 187). It is
therefore important to prevent serious constipation:
• Drink lots of water.
• Eat foods high in fiber (such as bran, whole grain cereals, fruits, vegetables,
cassava, beans, nuts).
• Stick to a scheduled bowel program.
• Keep active.

Planning a bowel program


Any bowel program will work better if you:
• Do the program every day (or every other day) and at the same hour. Do it
even if the person has had an accidental bowel movement shortly before, or has
diarrhea.

• Do the bowel program at the same time of day that the person usually had
bowel movements before his injury. Often the bowels move best after a meal or
a hot drink.
• If possible, do the program on a toilet or pot. The bowels work better sitting
than lying.
• Be patient. The bowels sometimes take days or weeks to change their pattern.
Page 192.
213
Types of bowel
Different persons require different types of bowel programs, depending on whether
their bowels are 'automatic', 'limp', or 'pull back'.
• Automatic bowel usually occurs in persons who have muscle spasms in their
legs, and an 'automatic bladder'. The muscle or 'sphincter' in the anus (asshole)
stays shut until there is a stimulation in the bowel to make it open, so that the
stool can come out. An automatic bowel will 'move' in response to a
suppository or stimulation by a finger.
• Limp or 'flaccid' bowel usually occurs in persons with low spinal cord
damage who have limp (not spastic) legs and bladder. The sphincter muscle in
the anus is also limp. So the person tends to 'ooze' or 'dribble' shit. A limp
bowel does not respond to finger stimulation.
• A bowel that pulls back is neither automatic nor limp. When you put a finger
up the anus, you can feel the stool move back up instead of coming out.

PROGRAM FOR AN AUTOMATIC BOWEL


• Start with a suppository if available. With a finger covered with a glove or
plastic bag, and then oil, push the suppository about 2 cm. (1 in.) up the anus.
Do not push it into the stool, but push it against the wall of the bowel. (Or try
the program without a suppository; usually finger stimulation is enough.)
• Wait 5 or 10 minutes. Then help the person sit on a toilet or pot. If he cannot
sit, have him lie on his left side (on top of old paper).
• Put an oiled finger into the anus about 2 cm. Gently move the finger in circles
for about 1 minute, until the anus relaxes and the stool pushes out.
• Repeat the finger action 3 or 4 times, or until no more stool is felt.
• Clean the butt and anus well and wash your hands.

SUPPLIES NEEDED

• non-sterile glove, finger glove, or plastic bag

• lubricant (vegetable or mineral oil works well)

• old paper or newspaper

• soap and water


• if available, suppositories such as Dulcolax or
glycerin. These are bullet-shaped pills that are
pushed into the anus. They stimulate the bowel
and cause it to push out the stool (shit).

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PROGRAM FOR A LIMP BOWEL


Since the bowel does not push, the stool must be taken out with a finger. It is best
done after each meal, or at least once a day.
• If possible, do it sitting on a toilet or pot, or lying on your left side.
• With a gloved and oiled finger, remove as much stool as you can.
• Since a limp bowel tends to ooze stool, eat foods that make the stool firm or
slightly constipated (not much stool-loosening foods).
Children can learn to do their own 'bowel program'. (See Page 212.)
PROGRAM FOR A BOWEL THAT PULLS BACK
For this kind of bowel, the bowel programs already described usually do not work.
Finger stimulation makes the bowel act in the opposite direction, and pull the stool
back in. The person will have 'accidents' during the day. Often it works better to,
• First, put some anesthetic jelly (such as Xylocaine) up the anus. If you cannot
get the jelly, you can mix some liquid injectable Xylocaine (lidocaine) with
Vaseline or any other jelly.
• Wait several minutes. Then do the automatic bowel program.

A bowel program may at first seem difficult and messy. But it soon
becomes an easy habit. It is very important both for the person's health
and his social well-being. Start now, do it regularly at the same hour,
and DO NOT MISS A DAY.

OTHER IMPORTANT POINTS


• Do not use enemas or strong laxatives regularly. They stretch the bowel, injure
its muscles, and make following a regular program more difficult. A mild
laxative may be taken occasionally, when needed. However, drinking more
liquid and eating food high in fiber is usually enough.
• If there is bright red blood in the stool, probably a blood vessel was torn during
the program. Be more gentle! If there is dark, old blood and the stools are black
and tar-like, seek medical advice.
• A small amount of liquid stool (diarrhea) may be a sign of 'impaction' (a ball of
hard stool stuck in the gut). Only liquid can leak around it. Do not give
medicine to stop diarrhea; this could make the impaction worse. Try to get it
out with a finger.

CHAPTER 26

Leprosy
Hansen's Disease
What is leprosy? It is an infectious disease that develops very slowly. It is caused by
germs (bacilli) that affect mostly the skin and nerves. It can cause a variety of skin
problems, loss of feeling, and paralysis of the hands and feet:

painless ulcers of the feet

How do people get leprosy? It can spread only from some persons who have
untreated leprosy, and only to other persons who have 'low resistance' to the disease.
It is probably spread either through sneezing or coughing, or through skin contact.
Most persons who come into contact with leprosy have a natural ability to resist it.
Either they do not get it at all, or they get a small unnoticeable infection that soon
goes away completely.
From the time a person is first infected with leprosy germs, it often takes 3 or 4 years
for the first signs of the disease to appear.
Leprosy is not caused by evil spirits, by doing something bad, by eating certain foods,
or by bathing in river water, as some people believe. It is not hereditary and children
of mothers with leprosy are not born with it. However, children who live in close
contact with someone who has untreated leprosy are more likely to get it.
How common is leprosy? Leprosy is much more common in some parts of the world
than others. It is more common where there are crowded living conditions and poor
hygiene. But rich people can also get it.
Even with improved methods for treatment, today there may be more persons with
leprosy than ever before. More than 12 million people have leprosy. In some villages
in Asia, Africa, and Central America, 1 person in 20 has leprosy.
Can leprosy be cured? Yes. There are medicines that kill leprosy germs. Usually
within a few days of beginning treatment, a person can no longer spread the disease to
others. (in fact, most persons, when their leprosy is first diagnosed, can no longer
spread it.) However, treatment in some persons must be continued for years to
prevent the disease from coming back.
Is early treatment important? Yes. Early treatment stops the spread of leprosy to
others. Also, if treatment starts before loss of feeling, paralysis, and deformities have
appeared, recovery is usually complete and the person is not physically or socially
disabled.
Persons receiving regular, effective treatment do not spread leprosy.

216
Checking children for signs of leprosy
In areas where leprosy is common, health and rehabilitation workers should work
together with parents and schoolteachers to check all children regularly for early
signs of leprosy. Most important are regular checkups of children in homes where
persons are known to have leprosy. Checkups should be done every 6 to 12 months
and should be continued for at least 3 years.
EARLY SIGNS
A slowly growing patch on the skin that does not itch or hurt. The patch may
be somewhat different in color from the surrounding skin. (Patches of leprosy
are never completely white, and are not scaly, except during a reaction - see
Page 219.)
Note: In early skin patches, feeling is often normal, or nearly so. If feeling is
clearly reduced inside a patch, leprosy is almost certain.
WHAT TO LOOK FOR
Examine the whole body for skin patches, especially the face, arms, back, butt,
and legs.

If you find a slightly pale patch without a clear edge, keep watching the spot.
Unless feeling is reduced inside the patch, look for other signs before deciding it
is leprosy. (Many children have similar pale spots on cheeks and arms that are
not leprosy.)
LATER SIGNS
1. Tingling, numbness, or some loss of feeling in the hands and feet.
Or definite loss of feeling in skin patches.
2. Slight weakness or deformity in the hands and feet.

3. Enlargement of certain nerves, with or without pain or tenderness. The


affected nerve feels like a thick cord under the skin. When they are quite thick,
they may be easily seen.
TEST INSIDE THE SKIN PATCHES FOR REDUCED FEELING.
With the tip of a feather or stiff thread, lightly touch the skin inside and outside
the patch and have the child tell you (without looking) where he feels the touch.

If the child cannot feel the thread, try pricking lightly with a sterile needle.
WARNING: Sterilize the needle in a flame before testing another child.
In a similar way, test for a numbness or reduced feeling in the hands and feet.
Have the child straighten her fingers. If she cannot do this, it may be a sign of
paralysis from leprosy.

Also have the child try to touch the base of her little finger with her thumb.

(CAUTION: These weaknesses may also be caused by polio, muscular


dystrophy, or other problems.)
Check for large nerves in these places
Diagnosing leprosy
Although skin patches are often the first sign of leprosy, many other diseases can
cause similar patches. Only when there is a loss of feeling inside the skin patch, as
compared with the skin outside the patch, can we be almost sure the person has
leprosy. However, in some forms of leprosy, loss of feeling in skin patches may
develop only years later, or not at all. Therefore, other evidence of leprosy must be
looked for.
Another sign of leprosy - tingling, numbness, or loss of feeling in hands and feet- may
also have other causes.
To make a fairly certain diagnosis of leprosy, the person should have at least 1 of
these 3 major signs:
1. definite loss or change of feeling in skin patches

Note: Leprosy patches on face often do not lose feeling as much as on other parts of
the body.
2. 2. definite enlargement of nerves
(For nerves to check, see Page 216.)
3. 3. presence of leprosy bacilli in a 'skin smear'

A 'split skin smear' is prepared by cutting a thin layer of skin from a skin patch. Less
commonly it is taken from the moist skin deep inside the nose-an area that is often
heavily infected. The skin sample is placed on a glass slide, colored with special
stains, and examined with a microscope.

The bacteria (bacilli) of leprosy, if present, can be seen under the microscope.
Whenever you suspect leprosy but the diagnosis is uncertain, a 'skin smear'
should be taken (by a trained worker).

Note: Not many persons with leprosy show all 3 of these signs. Persons with loss of
feeling in skin patches usually have no bacilli in their skin smears.

218
Types of leprosy
Depending on how much natural resistance a person has, leprosy appears in different
types. Here are the characteristics of the main types.
TUBERCULOID LEPROSY (TT)
• in persons with relatively high resistance
• no bacilli in skin smear
• Person cannot pass leprosy on to others.
• Skin patches are few. They may be very variable in appearance, but often
have raised margins and flat centers.

• Feeling is usually reduced or absent in centers of the skin patches.


• Skin patches usually lose hair and are dry (do not sweat).
• Skin on the face is not usually thickened.
• Nerve damage appears early, but usually only involves loss of feeling in
skin patches. Usually it does not affect the eyes, hands, or feet. When it
does, it often happens early and causes loss of feeling or strength in only
one hand or foot.
• Usually responds quickly to treatment because the body helps fight the
disease.
'BORDERLINE' LEPROSY combines features of both tuberculoid and
lepromatous leprosy.
• few to many bacilli in skin smears

• many skin patches, raised or flat with well-marked, often irregular edges,
and some feeling loss; patches about the same on both sides of the body
• Borderline leprosy may suddenly shift toward one or the other extreme.
When these shifts occur, 'leprosy reactions' are especially likely to appear
(see Page 219).
• Severe nerve damage often results, with loss of feeling and loss of
strength in both hands and both feet, with deformities.

Depending on where it falls along the line between the two extremes, borderline
leprosy is divided into:
borderline tuberculoid (BT),
borderline (BB), and
borderline lepromatous (BL).
LEPROMATOUS LEPROSY (LL)
• in persons with very low resistance
• bacilli-very many in skin smears
• Person can pass leprosy to others (until treated).
• There are usually very many skin patches-variable in appearance, but
often with raised lumps or thickened areas. In early stages, feeling is
usually normal inside these patches.
• The skin of the face may become thick, lumpy, reddish, especially over
the eyebrows, cheeks, nose, and ears.

• The bridge of the nose may gradually sink in.


• Nerve damage and paralysis often appear late, if the leprosy is not treated.
• Loss of feeling and strength affects both hands and both feet equally.
• Response to treatment is often slow. Treatment must usually be continued
for at least 2 years.

219
Leprosy reactions
Sometimes persons with leprosy have sudden periods of increased problems. These
may be something like an allergic reaction to the leprosy bacilli. Leprosy reactions
can happen in untreated persons, during treatment, or after treatment has stopped.
Reactions can occur when there are changes in the body, such as puberty in boys, in
late pregnancy or following childbirth, during illness from other causes, after
vaccination, or at times of emotional stress.
There are 2 types of leprosy reactions:
Type 1 reactions happen in persons with borderline leprosy when the body increases
its fight against the leprosy germs. There is danger of new weakness and loss of
feeling.
Signs to watch for are:
• skin patches may become swollen and red
• swollen hands and feet
• new tingling or weakness of hands and feet
• pain or discomfort along nerves (Rarely, lumps along the nerves form sores and
drain pus.)
IMPORTANT: Reactions sometimes cause new weakness and loss of feeling
without nerve pain.
Type 2 reactions happen with lepromatous leprosy. The body is reacting against too
many bacilli.
Signs may include:
• swollen, reddish, or dark lumps under the skin, especially on the face, arms,
and legs
• fever
• pain in testicles, breasts, or fingers
• stuffiness or bleeding of the nose
• red eye, with or without pain. Danger: This may lead to iritis or loss of vision
unless treated early.
Rarely, this reaction causes death due to swelling of the mouth, throat or lungs, or to
kidney problems.
IRITIS (INFLAMMATION OF THE IRIS)

Pain may begin suddenly or gradually. The eye waters a lot. It hurts more in bright light.
There is no pus as with conjunctivitis. Vision is usually blurred.
This is a medical emergency. Antibiotic ointments do not help. Get medical help
If untreated, leprosy reactions can quickly lead to permanent nerve damage with
increased paralysis of the hands, feet, or eye muscles, or to permanent damage to the
eyes.
Early treatment of leprosy reactions is very important to prevent paralysis,
deformity, and blindness.

Treatment of leprosy reaction is discussed on Page 221.

220
TREATMENT AND MANAGEMENT OF LEPROSY
Treatment and management of leprosy include 4 areas.
1. Long-term medical treatment to control the leprosy infection should begin as
early as possible.
2. Emergency treatment when necessary to control and prevent further
damage from leprosy reactions.
3. Safety measures, aids, exercises, and education to prevent deformities (sores,
burns, injuries, contractures).
4. Social rehabilitation: Work with the individual, the parents, the schools, and
the community to create a better understanding of leprosy, to lessen people's
fears, and to increase acceptance, so that the child or adult with leprosy can
lead a full, happy, meaningful life.
Medical treatment
Medical treatment of leprosy varies according to the policies and resources of the
particular country and health ministry. For years, DDS (dapsone) has been the main
drug used. Unfortunately, in some areas the leprosy bacilli are becoming 'resistant' to
DDS (are not harmed by it).
Rifampin usually works much faster against leprosy. However, it is more costly and
can also cause serious side effects. Still, where possible, it should be used. To prevent
development of resistance, it is usually given in combination with other anti-leprosy
medicines. When given in combination with DDS, rifampin probably needs to be
given only once a month. This reduces both cost and side effects.
Clofazimine, although less effective in killing leprosy bacilli than rifampin, has the
advantage that it also helps control leprosy reaction.
Multi-drug treatment, consisting of rifampin, DDS, and clofazimine, is now
recommended by the World Health Organization. It greatly reduces the time needed
for treatment, especially for tuberculoid leprosy.
Instruction for the dosage and precautions for these different medicines should be
obtained from the local leprosy control program. Usually it is wise to cooperate with
these programs instead of trying to treat leprosy by yourself.
Importance of long-term treatment
Treatment to cure leprosy takes a long time: from 1 to 2 years or more, depending on
the type of leprosy and the medicine used. If treatment is stopped too soon, not only
can leprosy return, but sometimes a leprosy reaction may result which can cause even
more nerve damage and paralysis or blindness.
It is therefore essential that health and rehabilitation workers make sure the
person with leprosy and her family understand the importance of taking the
medicines regularly.
Health centers should take care always to keep a reserve supply of medicines on hand.
TREATED EARLY, LEPROSY NEED NOT BE A DEFORMING OR
DISABLING DISEASE.

221
Treatment of leprosy reactions
As we mentioned on Page 215, feeling loss, paralysis, and deformities need not
happen to a person with leprosy.Early diagnosis and treatment together with quick
care of leprosy reactions should prevent the development of many deformities.
Care of a leprosy reaction has 4 objectives:
• Prevent nerve damage that causes loss of feeling, paralysis, and contractures.
• Stop eye damage and prevent blindness.
• Control pain.
• Continue with medicine to kill leprosy bacilli and prevent the disease from
getting worse.
Care includes:
1. Medicine to reduce pain and inflammation
For mild reactions (skin inflammation but not pain or tenderness of nerves) aspirin
is the best and cheapest drug. For dosage and precautions, see Page 134.
Chloroquine (a medicine for malaria) is also effective. To adults, give 2 tablets of
250 mg. at night (to avoid dizziness) for no more than 2 or 3 weeks. Give less to
children, according to their weight.
For severe reactions (pain along nerves, increasing tingling, numbness or weakness,
eye irritation, or painful testicles)corticosteroids (prednisolone) may be needed.
Because this is a medical emergency and because corticosteroids are dangerous and
often misused medicines, if at all possible get experienced medical advice before
using them.
2. Anti-leprosy medicine should be continued throughout the leprosy
reaction.
Clofazimine can be used instead of DDS, as clofazimine helps to reduce reactions
and fights the leprosy bacilli. The dose of clofazimine can often be increased (to 200
mg. daily in adults) and later reduced as the reaction lessens. However, for severe
reactions that damage nerves, prednisolone is needed.
3. Splinting and exercise
Holding the affected limbs in splints during a severe reaction helps reduce pain and
prevent nerve damage and contractures. (See Chapter 8.)
1. Holding the affected limbs in splints during a severe reaction helps
reduce pain and prevent nerve damage and contractures. (See Chapter
8.)

Joints should be splinted in the most useful position. Splints can be made of plaster
bandage or molded plastic (see Page 540). Very carefully pad splints for hands or feet
that do not feel pain.
Leave the splint on day and night until pain and inflammation are gone. Remove only
for gentle range-of-motion exercise at least once a day. (See Chapter 42.)
222
Cause of deformities
When most people think of leprosy, they think of the severe deformities of the
advanced case: deep open sores (ulcers), clawed fingers, gradual loss of fingers and
toes, and eye damage leading to blindness. Actually, these deformities are not caused
directly by leprosy germs, but result from damaged nerves. Nerve damage causes 3
levels of problems, one leading to the next:
LEVEL 1: loss of feeling, of sweating, and of strength in certain muscles
often PREVENTABLE with medical treatment of leprosy before there is nerve
damage
LEVEL 2: injuries, joint stiffness

often PREVENTABLE with protective eye and skin care and exercise to keep
full movement of joints
LEVEL 3: progressive deep infections with bone destruction and loss of vision
often PREVENTABLE with careful early treatment of sores, burns, and
infections

When there are level 1 problems, there is a lifelong danger of level 2 and 3 problems.
Because feeling has been lost, the person no longer protects herself automatically
against cuts, sores, thorns, and other injuries. And because they do not hurt, these
injuries are often neglected.
For example, if a person with normal feeling walks a long way and gets a blister, it
hurts, so he stops walking or limps.
But when a person with leprosy gets a blister, it does not hurt.

So he keeps walking until the blister bursts and becomes infected.

Still without pain, the infection gets deeper and attacks the bone.
In time the bone is destroyed and the foot becomes more and more deformed.

Usually, leprosy bacilli cannot be found in these open sores. This is because the sores
are not caused by the bacilli. Instead, they are caused by pressure, injury, and
secondary infection.

223
PREVENTION OF INJURY for persons with loss of feeling and strength
Eyes: Much eye damage comes from not blinking enough, because of weakness or
loss of feeling. Blinking keeps the eyes wet and clean. If the person does not blink
well, or his eyes are red, teach him to:

• Wear sunglasses with side shades, and maybe a sun hat.


• Close the eyes tightly often during the day, especially when dust blows.

• Roll the eyeballs up as you try to close eyes tight.


• Keep eyes clean. Wash well around eyes, keep flies and dirty hands away.
Hands: When you work with your hands, or cook meals, take special care. Never pick
up a pan or other object that might be hot without first protecting your hand with a
thick glove or folded cloth. If possible, avoid work that involves handling sharp or
hot objects. Do not smoke.
• Use tools with smooth, wide handles, or wrap cloth around handles.
To help the person with weak or deformed fingers hold a tool or utensil, you can mold
a handle to the shape of the person's closed hand.
Use epoxy putty, or plaster of Paris mixed with a strong glue. Have the person grip the
handle while it is still soft. Then let it harden.
For more aids for gripping, see Page 230 and Page 577.
Feet:

• Avoid going barefoot. Use shoes or sandals. (For suggestions on appropriate


footwear, see the next page.)

• Learn to take short steps. This helps protect the feet.


INJURY CARE
Eyes: Close eyes often. If necessary, use a simple eye patch. If eye gets infected
(forms pus) use an antibiotic eye ointment. Put the ointment into lower lid without
touching the eye.
Hands and feet: If you have a cut or sore, keep the injured part very clean and at rest
until it has healed completely. Take care not to injure the area again.

224
Things to do every day

• Checkups: At the end of each day (or more often if you work hard or walk far)
examine your hands and feet carefully-or have someone else examine them.
Look for cuts, bruises, or thorns. Also look for spots or areas on the hands and
feet that are red, hot, swollen, or show the start of blisters. If you find any of
these, rest the hands or feet until the skin is completely normal again.

• If the skin gets dry and cracks, soak the feet daily in water for at least 20
minutes. Then rub cooking oil, Vaseline, or lanolin hand cream into them (not
butter or animal fat. These attract insects and rats).
• As you rub oil into the hands and feet, do stretching exercises to keep the
complete range of motion in the joints.
With continued daily care, most deformities of leprosy can be prevented.

PREVENTION of contractures and deformities in persons with paralysis


Prevention of contractures from paralysis due to leprosy is similar to prevention of
hand and foot contractures due to polio and other forms of paralysis. (See Page 81.)
However, loss of feeling makes prevention more difficult.
Exercises to maintain full range of motion are covered in Chapter 42 (see especially
Page 370 to 373).
• Exercises to prevent fixed clawing of the hands can be done by ... ...
gently straightening the fingers like this:

and like this:

• A good exercise to prevent 'tiptoe' contractures with 'foot drop' is to stretch the
heel cords by leaning forward against a wall or by squatting with heels on the
ground.

Footwear for persons without feeling in their feet


The best footwear has:
• a well-fitted upper part that does not rub and has plenty of toe room (or leaves
toes open).
• a soft innersole about 1 cm. thick.
• a tough under-sole so thorns, nails, and sharp rocks do not injure foot.
• Footwear should be acceptable (not look too strange or unusual) so that the
person will use it.

AVOID:
• plastic shoes or sandals
• soft-soled sandals or thongs that thorns can pass through

• using nails to fasten heels and soles (These might poke through and injure
the foot. Better to sew on soles or use glue.)

225
Possible ways to get footwear

• Contact a leprosy hospital with a footwear workshop. They can make sandals if
you send a tracing of the foot.
• Check the market. You may find a canvas shoe or tennis shoe that already has a
good insole.

• Or you can put soft insoles into the shoes. But CAUTION: If you put an insole
that is thick into a standard shoe, there may not be enough room for the toes -
unless you cut out the part over the toes and leave them open.
• Make (or have a local shoemaker make) special footwear.

For the inner sole, you can use a soft sponge sandal or 'thong'. Or buy 'microcell'
rubber, which is soft but firm.
For the under-sole you can use a piece of old car tire.

• For persons who have developed sores on their foot here,


a bar here or a foot support here may help take pressure off the ball of the foot and
prevent new sores.

• A very helpful lining for preventing sores is a soft, heat-moldable foam plastic
called 'Plastazote'. For instructions on making footwear with Plastazote, see
Insensitive Feet on Page 638.
• For persons with a 'drop' foot, a brace or 'lift' can help prevent sores and
injuries.

You can get a brace or support at a rehabilitation workshop, or make a specially-fitted,


well-padded plastic brace (see Chapter 58).

Or make a simple device to hold the foot up.


226
LEPROSY AND THE COMMUNITY
Historically, there has been a lot of fear and misunderstanding about leprosy. Persons
with leprosy have often been thrown out of towns or treated with cruelty. Until
recently, governments took persons with leprosy away from their families and locked
them up in special institutions or 'leprosaria'. All this added to people's fears.
Today, leprosy can be cured-without any deformities or disabilities if treatment is
begun early. It can be treated in the home. The person can continue going to school or
to work. Having leprosy need not disable the person physically or socially.
But in many communities fear and misunderstanding remain. Persons still refuse to
admit - even to themselves - the early signs of leprosy. They delay in getting treatment
until permanent deformities appear. The disease continues to be spread to others by
those who are not yet treated. And so the myth and the fear of leprosy are kept alive.
To correct this situation will require the efforts of all health and rehabilitation
workers, schoolteachers, religious and community leaders, families of persons with
leprosy, and organizations of the disabled. These steps are needed:
1. Information and Education Schools, health centers, comics, radio, and television
can be used to help educate the community about leprosy. Information should:
• try to lessen the fears people have about leprosy and let them know it is
curable.
• stress the importance of early diagnosis and treatment.
• tell people how to recognize early signs and where to get treated.
• include popular stories of persons who think they might have leprosy, decide to
get help, and are cured.

2. Integration of leprosy programs into general health care. Too often leprosy control
is done as a separate program. It is important that people (and health workers) begin to
see leprosy as 'just another serious health problem'- like diarrhea in children.
3. Regular screening (mass checkups) of children for skin patches and other early
signs of leprosy. This can be part of a 'CHILD-to-child' program (see Chapter 47) in
which school children learn first to examine each other, and then their younger
brothers and sisters. A 'CHI LD-to- child Activity Sheet on Leprosy' is available from
TALC. (See Page 427.)
4. Community pressure and government orders to let children being treated for
leprosy attend school, find work, attend festivals, and take part in public functions.
(Organizations of disabled persons can help make this happen.)
5. Community support groups to help persons with leprosy feel accepted, cared for,
and respected; also to make sure that they take their medicines regularly and learn to
prevent deformity. Where needed, support groups can help persons with leprosy get
the schooling, health care, work, and social rights they deserve.
The example of a health worker who welcomes persons with leprosy and is not
afraid to touch them can do much to calm needless fears and encourage
acceptance.
227
CHAPTER 27
Amputations
An amputation is the loss of some part of the body. Rarely, children are born without one
or both hands or feet. More often, children lose an arm or leg because of accidents. Or
limbs must be cut off because of advanced bone infections (see Page 160) or dangerous
tumors (cancer).
Deciding what to do for a child with an amputation depends on a number of things,
including the age of the child at the time of amputation, the amount of amputation, and
above all, what the child (and parents) want and accept.

If she was born that way and is


given an artificial limb early, she
He will probably want and accept
will usually accept it and keep using
hooks, or whatever can help him hold
it.
things better.
But if her hand was amputated as an
Until he can get gripping hooks, figure
older child or she has gone for a
out ways to attach tools and utensils to
long time without an artificial
his stumps so he can do more for
limb ...
himself.
... she may prefer to keep using the
stump, and refuse a limb even if one
is made for her.

A child with high arm amputations


from birth often learns to use his feet
almost as well as his hands.

Up to age 10 (or more) she can walk


He should get an artificial leg as well with a straight leg (no knee joint).
soon after the amputation as
possible-or by one year of age.

A growing child will often need a When older, she may prefer and will
new, larger limb. Therefore, try to often walk better on a leg with a knee
fit him with low-cost limbs that are joint (if the family or program can pay
easy to replace. for it and can keep replacing it as the
child grows).

Limbs with detachable feet -


although often expensive - can be
lengthened.

When very young, he may move about


most easily on short 'stump' limbs.
When older, he may prefer longer
limbs that make him as tall as other
children - even if this means using
crutches.
Children with very high amputation
of the legs may do best in
wheelchairs.

228

CARE OF THE AMPUTATED LIMB


The goals in caring for the stump are to maintain a good shape and good position for
fitting an artificial limb. This means taking active steps to:

1. avoid swelling,
2. keep the full range of motion (prevent contractures), and
3. maintain strength.

WRAPPING THE STUMP


To prevent swelling and keep a good shape for fitting an artificial limb, it is
important to wrap the newly amputated limb for a long time after it has been cut
off.
The leg should be wrapped in a way that squeezes the liquid in the leg upward
(rather than trapping it at the end). Use an elastic bandage in this manner:
Below knee

Above knee

ELEVATING THE STUMP


In addition to being wrapped, a newly amputated limb should be kept lifted high up
most of the time. Avoid spending a lot of time with the arm or leg hanging down.
229

PREVENTION of contractures

A child with an amputated leg does not use his leg normally. He usually keeps it
bent, and he tends to develop contractures of the hip or knee (or both).
Therefore, special positioning and exercises are needed to prevent contractures and
maintain full range of motion (see Chapter 42).

POSITIONS
Encourage positions that keep the joints stretched, and avoid those that keep the
joint bent.
If contractures have already developed, try to position the child in ways that stretch
them.

STRETCHING EXERCISES

230

STRENGTHENING EXERCISES
Try to strengthen especially those muscles that straighten the joints, and those
muscles needed for walking.
WARNING about walking aids

Walking aids or artificial limbs, like these, that keep the stump bent may be useful
until the child can get a limb that keeps the joint straight.
However, it is very important that the child do stretching and strengthening
exercises daily if he uses a bent-joint aid.

With a well-fitted stump-in-socket limb, normal activity usually provides all the
stretching and exercise that are needed.

Instructions for making simple stump-in-socket limbs using bamboo and other local
materials are in Chapter 67.

ALTERNATIVES FOR A CHILD WITH AMPUTATED HANDS


See page 330

This is a grasping aid for a child whose fingers have been lost but the base of the
hand and wrist joint remain.
Page 551
The type of aid a child and her parents choose for an amputation will depend on
several things, such as availability, cost, usefulness, looks, and local cultural
factors. For help in choosing an appropriate aid, see Chapter 56, "Making Sure Aids
and Procedures Do More Good Than Harm," especially pages 531 and 532.

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