Short Bowel Syndrome

Short bowel syndrome is a condition that occurs when a child has lost a significant part of his or her small intestine.

Risk factors for short bowel syndrome include:

Babies born with abdominal wall defects that cause their intestines to remain outside their body at birth (gastroschisis)
Babies born with segments of intestine that are absent (atresia) or severely narrowed (stenosis)
Premature infants who have had surgery for necrotizing enterocolitis (NEC)—a condition that causes intestinal tissue to become inflamed and to die
Infants or children who have had part of their intestines removed for twisting of the intestines (volvulus), a congenital condition

The intestines are part of the digestive system. They are responsible for energy and fluid absorption, as well as absorption of vitamins, electrolytes and minerals. The small intestine is divided into three parts: the duodenum (located next to the stomach), the jejunum (middle section of the intestine) and the ileum (attached to the colon). The ileum has some functions that are very specialized and cannot occur in other parts of the intestines (such as absorption of bile and vitamin B12).

When children have portions of their small intestine removed, they often are not able to absorb enough fluids and nutrients to sustain growth and hydration. When this occurs, it is often called intestinal failure. Short bowel syndrome is the most common cause of intestinal failure in children.

After surgery, your child may experience the following symptoms of short bowel syndrome:

Bloating or abdominal distension
Diarrhea or frequent stools
Excessive gas or foul smelling stool
Severe diaper rash
Weight loss or poor weight gain

If your child has short bowel syndrome, he or she may experience the following complications:

Bacteria overgrowth
Dehydration
Electrolyte problems
Mineral deficiencies
Vitamin deficiencies

Often, your child’s doctor will know what types of problems or deficiencies your child may be at risk for based on the part of the intestine that was removed.

Diagnosis of Short Bowel Syndrome

If your child is known to have short bowel syndrome or is at risk for intestinal failure, a pediatric gastroenterologist will obtain frequent lab data to monitor his or her condition. Other tests include:

Blood tests. Blood tests monitor your child's electrolytes and vitamin and mineral absorption.
Fluoroscopy. Barium X-ray studies help show how well the intestines are functioning.
Standard X-rays. X-rays provide images your child’s physician can use to see the health of the intestines.
Nutrition monitoring. Your child’s pediatric gastroenterologist will closely monitor your child’s diet to ensure optimal health.

Treatments

Treatments for intestinal failure caused by short bowel syndrome include:

Well-child visits. Your child will be seen by his or her pediatrician on a regular basis to monitor his or her health.
Parenteral nutrition and enteral nutrition. IV parenteral nutrition (often referred to as TPN) provides additional fluid and energy to ensure growth while the intestines try to adapt to the condition over time. Enteral (into the intestines) nutrition is an essential part of the process of stimulating a child’s intestines to adapt or improve his or her ability to absorb nutrients. Often, breast milk or formula is dripped into the stomach or intestines at a slow rate to allow more time for nutrient absorption. This process of adaptation in the intestines can take months to years, but slow progress is important.
Medicines. Anti-diarrheal medicines or antibiotics may be used to improve your child’s symptoms.
Nutritional supplements. Nutritional supplements can help provide your child with important minerals and vitamins.
Surgery. If steady progress does not occur (decreasing your child’s need for parenteral nutrition), additional surgeries may be considered to improve the intestine’s ability to function properly and absorb nutrients.
Transplant. An intestinal transplant may be considered for severe forms of intestinal failure when the use of parenteral nutrition cannot be decreased or complications from intestinal failure arise.

Children with short bowel syndrome are best cared for by a team of healthcare providers. This should include pediatric gastroenterologists, surgeons, pharmacists, dieticians and skilled nurses. Providers with experience and expertise in caring for the complex needs of children with short bowel syndrome are needed due to the complex needs of your child.

Key Points to Remember

Short bowel syndrome is a term that describes insufficient intestine length needed to absorb fluid and nutrients.
A team of healthcare providers should participate in the care of your child with short bowel syndrome.
Parenteral nutrition through IV (TPN) and enteral nutrition can help the intestines adjust slowly to absorbing nutrients.
Slow progress is important. Often, the intestines of children with short bowel syndrome can take months to years to gain the ability to fully absorb enough fluid and nutrients to sustain growth.

Support Services & Resources

Visit the websites below to find support groups and services and learn more about short bowel syndrome.

Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.

Learn More About Riley Support Services

Intestinal Care Program

The Intestinal Care Program at Riley Hospital for Children at IU Health provides interdisciplinary care for children with short bowel syndrome.

GIKids

This website from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition offers families information about short bowel syndrome.

National Institute of Diabetes and Digestive and Kidney Diseases

This National Institutes of Health website includes information for patients and families living with short bowel syndrome.

The Oley Foundation

The website for this foundation provides information, resources and education for patients and families living with home IV and tube feeding.