Hirschsprung Disease (cont.)
What will my child's life be like after surgery?
Ostomy
Most babies are more comfortable after having an ostomy because they can pass
gas more easily and aren't constipated anymore.
Older children will be more comfortable, too, but they may have some trouble
getting used to an ostomy. They will need to learn how to take care of the stoma
and how to change the bag that collects stool. They may be worried about being
different from their friends. Most children can lead a normal life after
surgery.
Nurses at the hospital can teach you and your child how to care for a stoma
and can talk to you about your worries.
Adjusting After Pull-through
After a pull-through, 9 out of 10 children pass stool normally. Some children
may have diarrhea for a while, and babies may develop a nasty diaper rash.
Eventually the stool will become more solid and the child will need to go to the
bathroom less often. Toilet training may be delayed, as the child learns how to
use the bottom muscles only after pull-through surgery. Older children might
stain their underwear for a while after the surgery. It is not their fault. They
can't control this problem, but it improves with time.
Some children become constipated because 1 in 10 children with Hirschsprung's disease has
difficulty moving stool through the part of the colon without nerve cells. A
mild laxative may also be helpful. Ask your doctor for suggestions.
Diet and Nutrition
Drinking plenty of liquids is important after surgery for Hirschsprung's disease.
One job of the large intestine is to collect the water and salts the body
needs. Since your child's intestine is shorter now, it absorbs less. Your child
will need to drink more to make sure his body gets enough fluids.
An infant who has long-segment disease requiring an
ileostomy may need special tube feedings. The shortened intestine does not allow
the bloodstream enough time to absorb nutrients from food before it is pushed out of the body as
stool. Tube feedings that deliver nutrients can make up for what is lost.
Eating high-fiber foods like cereal and bran muffins can help reduce
constipation and diarrhea.
Infection
Infections can be very dangerous for a child with Hirschsprung's disease.
Infection of the large and small intestines is called enterocolitis. It can
happen before or after surgery to treat Hirschsprung's disease. Here are some of
the signs to look for:
Call your doctor immediately if your child shows any of these signs. If the
problem is enterocolitis, your child may be admitted to the hospital. In the
hospital, an intravenous (I.V.) line
may be needed to keep body fluids up and to deliver antibiotics to fight the
infection. The large intestine will be rinsed regularly with a mild salt water
solution until all remaining stool has been removed. The rinse may also contain
antibiotics to kill bacteria.
When the child has recovered from the infection, the
doctor may advise surgery. If the child has not had the pull-through surgery
yet, the doctor may prepare for it by doing a (colostomy or ileostomy before the
child leaves the hospital. If the child has already had a pull-through
operation, the doctor may correct the obstruction with surgery.
Enterocolitis can be life threatening, so watch for the signs and call your
doctor immediately if they occur.
Long-segment Hirschsprung's disease
Sometimes Hirschsprung's disease affects most or all of
the large intestine, plus some of the small intestine. Children with
long-segment Hirschsprung's disease can be treated with pull-through surgery,
but there is a risk of complications such as infection, diarrhea, and diaper rash afterward. Parents need to pay close attention to their child's
health. Also, since some, most, or all of the intestine is removed, drinking a
lot of fluid is important.
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