Short Bowel Syndrome
What is short bowel syndrome?
Short bowel syndrome refers to a condition that can occur after some of a person’s intestines are surgically removed because of a medical necessity. This condition causes digestive issues for children because the remaining intestines are not long enough to function correctly.
In children, the majority of patients with short bowel syndrome undergo surgery very early in life because they are born with abnormal intestines or acquire a serious intestinal disorder. Older children and adults may develop short bowel syndrome after surgery or trauma.
The intestines absorb fluid, electrolytes and other nutrients from the food that we eat and need for normal growth and development. Children with short bowel syndrome typically suffer from faulty absorption. The most common symptom in children is diarrhea, which is usually severe. Without proper treatment, children with short bowel syndrome may develop serious problems related to dehydration and malnutrition.
Children who are just diagnosed with short bowel syndrome or who have a severe case often require all of their nutrition to be delivered intravenously, through an I.V. This is called total parenteral nutrition (TPN). TPN is a liquid delivered directly into the blood stream via a catheter that enters a major blood vessel (central venous catheter) rather than a hand I.V. It contains the essential nutrients, minerals, vitamins and electrolytes for a growing child.
In some cases, children recover their digestive ability with time and support, through a process called adaptation, where the bowel regains the ability to absorb nutrients. If a child has insufficient intestinal length and function such that they require TPN for greater than 3 months, they have intestinal failure. Children with intestinal failure require TPN constantly in order to maintain adequate hydration or growth.
Infants and children with intestinal failure are at risk for complications related to their underlying intestinal disorders, as well as problems that can arise from the required TPN therapy. The most common complications of TPN therapy in children with intestinal failure include liver disease, blood stream infections and complications related to the central venous catheter.
Aside from TPN management, children with short bowel syndrome and intestinal failure need specialized nutrition. They may require nutritional formulas that are provided via feeding tubes, called gastrostomy tubes or g-tubes, to help promote adaptation and absorption.
Ultimately, the treatment goal for all children with short bowel syndrome and intestinal failure is to maintain growth and development while promoting the healing and progression of their intestinal absorption.
What causes short bowel syndrome and intestinal failure?
The most common conditions that lead to short bowel syndrome in children because they require intestinal removal are:
- Congenital defects of intestinal anatomy, such as gastroschisis, intestinal atresia, or intestinal malrotation with volvulus
- Necrotizing enterocolitis, a condition requiring intestinal surgery that most commonly affects premature infants
Short bowel syndrome is the most common reason that children develop intestinal failure. Other conditions that lead to intestinal failure in children include:
- Severe motility disorders, including chronic intestinal pseudoobstruction
- Rare congenital defects of the intestinal absorptive cells
Who gets short bowel syndrome?
In children, short bowel syndrome most commonly affects infants who are born with congenital anatomic disorders of their intestines. These disorders can only be treated with surgery that removes the affected segment of their intestines, and after the surgery the children may develop short bowel syndrome.
- The Oley Foundation is a national support and networking group for children and adults with short bowel syndrome.
What are the signs and symptoms of short bowel syndrome?
Children with short bowel syndrome usually have severe malabsorptive diarrhea. This can lead to complications including:
- Growth impairment and failure to thrive
- Electrolyte abnormalities
- Vitamin and mineral deficiencies
Other problems often seen in children with short bowel syndrome:
- Feeding difficulties
- Kidney stones
- Bacterial overgrowth
- Gastrointestinal bleeding
Complications related to TPN therapy
- Liver disease
- Bloodstream infections related to central venous catheters
What tests are used to diagnose short bowel syndrome?
Many types of tests are used to help patients manage short bowel syndrome. They include blood and urine tests that monitor patients’ electrolyte, vitamin and mineral levels.
Imaging tests help doctors to see the condition of a patient’s intestines and other internal organs. For example, an Upper GI Series is a set of X-rays taken while a child drinks a liquid barium drink that shows up as white on an X-ray. This lets doctors see the length and width of the intestines and measure the time it takes the drink to pass through the GI tract. Ultrasounds are often used to examine the liver, gallbladder and other abdominal structures.
Endoscopic evaluations including upper intestinal endoscopy and colonoscopy are used in some cases, if more detailed evaluation of the intestine is indicated. These procedures are usually done under anesthesia, so a child doesn’t feel any pain. During an endoscopy or colonoscopy, a doctor will pass a tiny camera through a child’s gastrointestinal tract to look at the different types of tissues.
How do doctors at Children’s Hospital Colorado make a diagnosis?
Usually, doctors diagnose short bowel syndrome after an infant or child has undergone intestinal surgery because of an abnormality or trauma. These children are followed closely to make sure they are getting the correct nutrition. For children who did not have surgery but are suspected of having short bowel syndrome, doctors may recommend testing before making a diagnosis.
How are intestinal failure and short bowel syndrome treated?
Children with malabsorptive diarrhea from short bowel syndrome often require specialized care that may include nutritional interventions, medications and sometimes surgery. The goal in management of these complex patients involves a multidisciplinary team approach to care, a process which is called intestinal rehabilitation.
At Children’s Hospital Colorado, we offer a Pediatric Intestinal Rehabilitation program at the Digestive Health Institute that offers expert, state of the art care for children with short bowel syndrome and intestinal failure.
Our team includes pediatric gastroenterologists and nurse practitioners, pediatric surgeons, specialist nurses, dietitians, pharmacists and social workers. We closely collaborate with Children’s Colorado’s neonatologists, feeding therapists, and gastroenterologists who are specialists in bowel absorption and motility.
Why choose Children’s Hospital Colorado for your child’s short bowel syndrome or intestinal failure?
Our team strives to improve the outcome and quality of life for children with short bowel syndrome and intestinal failure and their families. We offer the most current practices in nutritional management and have programs in place to drastically reduce the changes for central line infections. At Children’s Colorado, our surgeons and specialty nurses have experience in innovative surgical techniques for our patients that require surgical treatments. We also participate in research and are members of a national research consortium that aims to improve the lives of children with short bowel syndrome and intestinal failure by developing new techniques and treatments plans.
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