Digestive and Gastrointestinal Conditions

Short Bowel Syndrome

What is short bowel syndrome?

Short bowel syndrome (SBS) means a child’s bowel (or intestine) isn’t long enough and doesn’t properly absorb nutrients from food. The condition can cause malnutrition and serious problems with growth and development.

Children develop SBS when they have a big part of their bowel surgically removed. This usually happens because they were born with a condition that damaged their small bowel, such as gastroschisis (gas-troh-SKEE-sis).

SBS can also occur because of conditions including: 

Diet, intravenous nutrition such as total parenteral nutrition (TPN) and medicine often help children with SBS get the nutrition they need. Some children may need surgery or other advanced treatments.

Short Bowel Syndrome at Seattle Children’s

Seattle Children’s Intestinal Rehabilitation Program features a team of doctors focused on getting your child’s intestine to work again. It is the only program of its kind in the Pacific Northwest and one of just a few in the nation.

Our Pediatric General and Thoracic Surgery team is experienced in surgeries to treat SBS, including the serial transverse enteroplasty procedure (STEP). This lengthens the bowel in children with SBS.

Some children with SBS may need an intestine transplant. Doctors at Seattle Children’s helped pioneer this procedure. Our Liver and Intestine Transplant Clinic is one of only a few clinics where children can receive intestine transplants.

  • Our care team has extensive experience diagnosing and treating SBS. We receive referrals from multiple states and will partner with your child’s primary care provider to guide their care at home.

    Our experts focus on how today’s treatment will affect your child as they develop and become an adult. We base treatment plans on years of experience and the newest research on what works best — and most safely — for children and teens.

    At Seattle Children’s, we offer the only pediatric Intestinal Rehabilitation Program in the Pacific Northwest. Our intestine transplant team is led by 2 internationally recognized doctors who have provided care for more children with intestinal failure than most other doctors in the United States. This team features: 

    • Dr. Simon Horslen, a pediatric liver and intestine specialist (or hepatologist)
    • Dr. Jorge Reyes, a surgeon who has performed more than 200 multiorgan transplantations in children
  • At Seattle Children’s, your family has a full team behind you, from diagnosis through treatment and follow-up. From our appointment schedulers to our pediatric nurses, our team is specially trained to work with children and their families. Our facilities and equipment also reflect this kid-friendly, family-centered approach.

  • Our doctors and researchers are involved in clinical trials to develop and study new treatments. We aim to improve how we overcome intestinal failure and make intestinal surgery and transplants better. Some of our patients can participate in these studies and get the newest treatments before they are widely available. Your doctor will discuss any new treatments that might help your child.

Symptoms of Short Bowel Syndrome

Children with SBS may have these symptoms: 

  • Diarrhea
  • Bloating
  • Vomiting
  • Weight loss
  • Weakness
  • Failure to thrive (not growing as expected)
  • Poor absorption of nutrients

Diagnosing Short Bowel Syndrome

If your child has had a condition or surgery that puts them at risk for SBS, your child’s doctor will closely watch their nutrition, growth and development to measure how well the bowel is working.

SBS is usually diagnosed if the bowel has been shortened and if a child has needed intravenous (IV) feeding, like total parenteral nutrition (TPN), for more than 90 days.

Treating Short Bowel Syndrome

Seattle Children’s is home to the Pacific Northwest’s only pediatric Intestinal Rehabilitation Program. Our doctors have special training in treating SBS so your child can get the proper nutrition they need. When a child needs an operation, our Pediatric General and Thoracic Surgery team includes experts in the procedures that can help overcome SBS. Studies show that children with this condition do better in specialized pediatric clinics.

  • Many children with SBS need extra nutrients through a tube that goes into a vein, called intravenous (IV) feeding.

    Through that tube, children will receive intravenous nutrition like total parenteral nutrition (TPN), which is a long-term treatment for some children. When possible, doctors try to wean children off TPN. This helps children lead a more normal lifestyle and can prevent complications, such as liver problems and bacterial infections.

    Another important part of feeding is giving your child some food by mouth. This helps your child learn how to suck and eat, helping them absorb food. Our dietitians and therapists are specially trained to teach your child these skills.

  • Intestinal rehabilitation tries to get your child’s small bowel working again with diet, medicines and, in some cases, surgery. This form of rehabilitation is our program’s main focus. The team includes doctors who specialize in the stomach and intestines (gastroenterologists), liver doctors (hepatologists), pediatric surgeons, nurses, nutritionists, social workers, pharmacists and others, many with advanced training in how to handle SBS.

  • Medicines are used in children with SBS to: 

    • Reduce stomach acid
    • Slow the movement of food through the bowel
    • Decrease diarrhea
    • Help children absorb more nutrients
    • Control bowel bacteria 

    Hormones may be used to help the bowel lining (mucosa) grow, which helps it absorb more nutrients.

  • We may recommend surgery for your child in certain cases to lengthen the bowel (intestine) or make the bowel smaller through an “intestinal tapering” procedure. Seattle Children’s is one of just a handful of hospitals that perform these surgeries several times each year. 

    • Intestine lengthening surgery: Some children with SBS have enough small bowel that surgeons can lengthen it and restore function through a surgery called a serial transverse enteroplasty procedure (STEP). 

      During the STEP procedure, the surgeon cuts notches in both sides of an enlarged segment of bowel and sews along the cut edges to create a zigzag shape that makes the bowel narrower and longer than the enlarged bowel. This means food will take longer to move through the bowel and will touch the bowel lining for a longer period so your child’s body can digest food better and create less stool.
    • Intestine tapering surgery: In children with SBS, part of the small bowel may become enlarged (dilated). Fluid and bacteria can collect in this area. This can lead to infections and can keep nutrients from being absorbed. The enlarged bowel may not move as well. “Intestinal tapering” is when surgeons operate to make this area smaller.
  • If intestinal rehabilitation is not an option for your child or is ineffective, an intestine transplant may be the next step. Our Intestine Transplant Program’s doctors helped lead the way in intestine transplant surgery. This has become the best option for treating children with permanent intestinal failure.

Contact Us

Contact our Intestinal Rehabilitation Program at 206-987-2521 for an appointment, a second opinion or more information about short bowel syndrome.

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