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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. 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, this is often called intestinal failure. Short bowel syndrome is the most common cause of intestinal failure in children.

Risk Factors

  • Babies who are 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 NEC (necrotizing enterocolitis)
  • Infants or children who have had part of their intestines removed for twisting of the intestines (volvulus)

Function of Intestines

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 broken up 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 a substantial portion of the intestines are lost, children may not be able to absorb enough fluid and energy to maintain growth. This is when intestinal failure occurs and often requires specialized treatment to provide additional energy.

Symptoms

Often infants are known to have short bowel syndrome before any symptoms develop. After surger to treat short bowel syndrome, symptoms can occur once feeding is started again. These include:

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

Complications can also arise as a result of short bowel syndrome, including dehydration, electrolyte problems or vitamin and mineral deficiencies. Often, your child’s doctor will know what types of problems or deficiencies your child may be at risk for developing based on the part of the intestine that was removed. Bacteria may also overgrow in the small intestines if the last part of the ileum was removed.

Exams and Tests

Basic lab data is often obtained frequently in children with short bowel syndrome and intestinal failure. Blood tests are used to monitor for problems with electrolytes, vitamins or minerals.  Occasionally, X-rays (standard X-rays and barium studies) may be used to evaluate the remaining portions of the intestine. Most importantly, regular and frequent follow-up visits with your physician will be needed to make sure that your child is growing appropriately and receiving the right medicines and nutrition.

Treatment

If intestinal failure occurs in infants, your child will require additional fluid and energy in the form of IV nutrition (parenteral nutrition or TPN). Use of TPN ensures growth while the intestines try to adapt to the condition over time. Breast milk or formula is an essential part of the process of stimulating your child’s intestines to adapt or improve their 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 often takes months to years, but slow progress is important.

Medications may be used to improve your child’s symptoms. Medications may include anti-diarrheal medications or antibiotics if bacterial overgrowth is suspected. Vitamin and mineral supplements may be needed.

If steady progress does not occur in decreasing your child’s need for TPN, additional surgeries may be considered to improve the intestine’s ability to function properly and absorb nutrients.  Intestinal and/or liver transplantation may be considered for severe forms of intestinal failure if TPN use is unable to decrease or complications from intestinal failure arise.

Team Approach

Various studies have shown the importance of a team environment with multiple medical providers who have specialty in caring for children with short bowel syndrome. Riley Hospital for Children Gastroenterology at Indiana University Health partners with Pediatric Surgery within the Pediatric Intestinal Rehabilitation Clinic at Riley Hospital for Children. Other medical providers that assist with this clinic include skilled pediatric nurses, registered dieticians and pharmacists.

For More Information

GIKids, a partnership with the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)

National Digestive Diseases Information Clearinghouse

The Oley Foundation

American Society for Parenteral and Enteral Nutrition 

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