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Hirschsprung Disease (HD)

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Your Child's Life After Surgery

Hirschsprung (pronounced HURSH-sprung) Disease (HD), is a disease of the * large intestine, which usually occurs in children.

Ostomy

Children who have been very sick from Hirschsprung Disease may first need surgery called an * ostomy (pronounced - OSS-tuh-mee). This surgery helps the child get healthy before having the pull-through. Some doctors do an ostomy in every child before doing the pull-through. In an ostomy, the doctor takes out the diseased part of the intestine. Then the doctor cuts a small hole in the baby's * abdomen, then connects part of the intestine to the hole. The hole is called a * stoma.

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.

Step 1: The doctor takes out most of the diseased part of the intestine.	Step 2: The doctor attaches the healthy part of the intestine to the stoma (a hole in the abdomen).

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 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.

Before Surgery: The diseased section is the part of the intestine that doesn't work	Step 1: The doctor removes the diseased section.	Step 2: The healthy section is attached to the * rectum or anus.

Diet and Nutrition

Drinking plenty of liquids is important after surgery for Hirschsprung 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 disease. Infection of the large and * small intestines is called * enterocolitis. It can happen before or after surgery to treat Hirschsprung disease. Here are some of the signs to look for:

• Fever
• Swollen abdomen
• Vomiting
• Diarrhea
• Bleeding from the rectum
• Sluggishness

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 Disease

Sometimes Hirschsprung Disease affects most or all of the large intestine, plus some of the small intestine. Children with long-segment Hirschsprung 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.

Definitions For This Page - In Alphabetical Order

* Abdomen
Pronounced - AB-duh-men
The abdomen is the area between the chest and the hips in the front of the body.

* Colostomy
Pronounced - koh-LAW-stuh-mee
Colostomy is surgery to connect the colon to a hole in the abdomen.

* Diarrhea
Pronounced - DY-uh-REE-ah
Diarrhea is loose, watery stool.

* Enterocolitis
Pronounced - EN-tuh-ro-ko-LY-tis
Enterocolitis is an infection of the small and large intestines.

* Ileostomy
Pronounced - il-ee-AW-stuh-mee
Ileostomy is surgery to connect the bottom of the small intestine (ileum) to a hole in the abdomen.

* Large Intestine
Pronounced - in-TESS-tin
The large intestine is a long tube that makes stool and carries it out of the body.

* Long-segment Disease
When the diseased section reaches to or includes the small intestine, it is called long-segment disease.

* Nerve Cells
Nerves are long fibers that carry messages from the body to the brain, and back again, like telephone lines. The messages often tell a body part what to do. Nerve cells are part of nerves. In the intestine, the nerve cells tell muscles how to push the stool along.

* Ostomy
Pronounced - OSS-tuh-mee
Ostomy is a surgery to connect part of the intestine to a hole in the abdomen.

* Rectum
Pronounced - REK-tum
Rectum is the last section of the large intestine.

* Small Intestine
The small intestine is the organ where most digestion occurs. It measures about 22 feet and includes the duodenum, jejunum, and ileum. More about Small Intestine.

* Stoma
Pronounced - STO-mah
Stoma is a hole on the outside of the body, made by surgery. Stool leaves the body through the hole, instead of through the anus.

* Stool
Stool is solid waste from the body, the material that gets passed in a bowel movement.

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References:
National Digestive Diseases Information Clearinghouse (NDDIC)
October 2004
digestive.niddk.nih.gov

The information discussed above is a general overview and does not include all the facts, or include everything there is to know about any medicine and/or products mentioned. Do not use any medicine and/or products without first talking to your doctor. Possible side effects of medications, other than those listed, may occur. Other brand names or generic forms of this medicine may also be available. If you have questions or concerns, or want more information, your doctor or pharmacist has the complete prescribing information about this medicine and possible drug interactions.