What is short bowel syndrome in children?

Short bowel syndrome is when the body has trouble absorbing nutrients from food because of a problem with the small intestine. It often happens to children who have had a large part of their small intestine removed. This complex condition can be life-threatening in some babies and children.

The small intestine is a long, curving organ. It connects your stomach to your large intestine. Digestion starts in your stomach. But most digestion takes place in the small intestine. The small intestine also absorbs nutrients. The term bowel refers to the small intestine and large intestine together.

Your child can have problems when half or more of the small intestine is taken out. Your child may not be able to absorb enough water, vitamins, and other nutrients. This can cause major nutritional problems and symptoms.

It can also raise your child's risk for short bowel syndrome. The more of the small intestine that’s removed, the greater your child’s chance for severe problems.

Different parts of the small intestine absorb different nutrients. If your child has the last part of the small intestine taken out, they can have nutritional problems. This is because the first part of the small intestine cannot absorb all nutrients. Having the valve between the small and large intestine also makes a big difference in your child’s health. Some children with short bowel syndrome have also had part of their large intestine taken out. This leads to more problems.

Having short bowel syndrome from birth is very uncommon. The underlying cause of short bowel syndrome is often different between newborns and adults.

What causes short bowel syndrome in a child?

A problem your child is born with (congenital) can keep the small intestine from forming correctly. This can cause short bowel syndrome in newborns.

Short bowel syndrome in infants can be caused by conditions that require part of the small intestine to be removed. Issues that permanently harm the small intestine can also cause symptoms of short bowel syndrome.

Some of the causes of this condition in infants can include:

• Dead cells in the intestines (necrotizing enterocolitis)

• Blockage in a part of the small intestine called the ileus (meconium ileus). This happens when the first solid stools passed by a newborn are thicker and stickier than normal. 

• Belly (abdominal) wall defects

• Twisting of the intestines (volvulus)

• Intestinal problems that are present at birth

• Severe problems with absorbing nutrients

• Problems with digested food moving through the intestines

Later in childhood, there are other common causes of short bowel syndrome. These can include inflammation of the lining of the digestive tract (Crohn’s disease) and injury to the intestines.

Which children are at risk for short bowel syndrome?

Your child is at greater risk for short bowel syndrome if they have certain health issues. These include:

• Necrotizing enterocolitis

• Crohn's disease

• Cystic fibrosis

What are the symptoms of short bowel syndrome in a child?

Symptoms of short bowel syndrome in children include:

• Diarrhea (most common symptom)

• Dehydration

• Poor weight gain or malnutrition

• Vomiting that keeps occurring

• Cramping

• Heartburn

• Severe tiredness (fatigue)

• Food sensitivities

Symptoms vary, depending on which part and how much of the intestine was removed.

How is short bowel syndrome diagnosed in a child?

If your child has had a large part of their small intestine removed, their healthcare provider will watch for short bowel syndrome. If your child has a history of surgery and symptoms of short bowel syndrome, they have a much higher risk of developing the condition. Diagnosing it may be harder if your child is born with the condition.

Your child’s provider may rule out other causes of their symptoms. The provider will do an exam and ask about their symptoms. Your child may also need other tests. These can include:

• Basic blood tests to check for infection, anemia, and electrolytes

• Tests to check for nutritional deficiencies

• Stool tests to see if your child is absorbing enough fat

• X-ray, CT scan, or ultrasound of the belly to look for complications

• Endoscopy to look at the esophagus, stomach, and early duodenum

• Colonoscopy to look at the colon

How is short bowel syndrome treated in a child?

Treatment depends on how severe the condition is. It also depends on how long it’s been since your child had surgery to remove the small intestine.

After surgery, your child’s remaining intestine slowly adapts. Over time, it is able to absorb nutrients better. This process can take 1 or 2 years. This varies depending on how much and what part of your child’s small intestine was taken out.

Your child will likely have feedings through an IV (intravenous) line after surgery. This is called parenteral nutrition. This means that they won’t eat solid foods right away. Instead they will get liquid nutrients through a tube placed in the vein.

As your child recovers, their provider may slowly start enteral feedings. This gives thickened liquid nutrition directly to your child’s stomach or small intestine through a feeding tube. Over time, provider will try to increase the enteral feedings and decrease the parenteral feedings. If your child is a baby, breastmilk may be given in the enteral feeding.

Your child may eventually be able to have feedings by mouth (orally). Your child will need to eat small meals often. They should stay away from foods that are high in sugars, fats, protein, and fiber. Your child may need more calories than other children because of the loss of part of the intestine.

Some people with severe short bowel syndrome will need long-term parenteral nutrition. This can sometimes cause problems. If this happens, your child may need a small intestine transplantation. Or your child’s healthcare provider may advise a nontransplantation surgery. This can improve how your child absorbs nutrients.

Other treatments for short bowel syndrome include:

• Special diet

• H2 blockers or proton pump inhibitors (PPIs). These are medicines to decrease stomach secretions.

• Medicines to treat diarrhea

• Extra nutritional supplements such as fiber or fat

• Electrolyte solutions. Your child may take these by mouth or through an IV

• Medicines to prevent liver damage, which are given to children on parenteral nutrition

• Medicines to help the small intestine adapt

• Surgery to lengthen the intestines may be an option in certain cases

What are possible complications of short bowel syndrome in a child?

This condition can cause serious issues. Your child’s healthcare provider will watch for complications and try to treat any problems early on. Complications depend on which part and how much of the intestine was removed.

If problems aren’t treated correctly, your child can have diarrhea. This can cause dehydration, weight loss, and malnutrition. It may even lead to death.

Other complications can include:

• Liver disease. This can happen from long-term use of parenteral nutrition. In rare cases, your child may need a liver transplant.

• Your child may need to have their gallbladder removed.

• Bacterial overgrowth of the small intestine. This can make your child’s symptoms of short bowel syndrome worse.

• Nutrient deficiencies. Specific problems depend on which nutrients are low. For instance, some children show early bone loss. This is because of poor absorption of calcium and other nutrients.

• Kidney stones. This is caused by extra oxalate in your child’s urine.

• Infections. Catheters used for feeding can become infected.

• Peptic ulcer. These are sores in the lining of the stomach or small intestine from too much stomach acid.

Follow the provider’s directions about diet and medicines. Doing so will reduce your child’s risk for problems.

When should I call my child’s healthcare provider?

Call your child’s healthcare provider if your child has severe diarrhea or vomiting. They may need to go to the hospital to get IV fluids to rehydrate. You should also call the provider if your child has any new symptoms.

Your child’s care may be complex. It may feel overwhelming. It’s important to talk with your healthcare providers if you are not able to cope with the stress of caregiving. They will help you find support and other resources.

Key points about short bowel syndrome in children

• Short bowel syndrome is when the body has trouble absorbing nutrients from food because of a problem with the small intestine. It often happens to children who have had a large part of their small intestine removed.

• The main symptoms of short bowel syndrome in children include diarrhea and failure to gain weight.

• After surgery, your child will likely get nutrients through a vein. This is called parenteral (IV) nutrition. Then your child will likely get thickened liquid nutrition directly to the stomach or small intestine through a feeding tube. Over time, your child may be able to eat normally.

• Short bowel syndrome can cause problems. These are more likely in children who need long-term parenteral nutrition. Your child may need a small intestine transplant.

• Your child’s care may seem overwhelming. Talk with your healthcare providers if you are not able to cope with the stress of caregiving.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are and when they should be reported.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.