Short bowel syndrome is a condition in which the small bowel or intestine is too short to do all the things it is supposed to do to keep a child healthy and growing. Short bowel syndrome is most commonly due to a surgical resection which occurs early in life but can occur at any time and the causes are variable. There are also some other bowel problems, such as motility disorders or problems with the lining of intestine, where the intestine is a normal length but just does not work the way it should.
The normal function of the intestine is to absorb nutrients (calories, vitamins, minerals) and fluid. When there is loss of part of the intestine or it is not working normally, the body has trouble absorbing all the necessary nutrients needed for growth. Therefore, with short bowel syndrome, specialized nutrition support is required. This can be in the form of IV nutrition and/or in the form of supplemental nutrition through the intestine, either via a feeding tube or by mouth.
The goal of treating short bowel syndrome is to help the remaining intestine adapt and preventing nutritional and micronutrient deficiencies. Adaptation is the process in which the remaining intestine takes over the work of the part that was lost (which is a slow process) so that it can absorb more of what the body needs. As the bowel adapts it is able to more efficiently absorb nutrients and fluid, and the kids become less dependent on their nutrition support.
Why is it important to properly treat Short Bowel Syndrome?
With short bowel syndrome, complications include poor growth, diarrhea (because the intestine cannot absorb everything it needs), small bowel bacterial overgrowth (where normal bacteria in the GI tract become excessive and cause problems), vitamin and mineral deficiencies, and decreased bone density (weaker bones). For those who require long term IV nutrition support, there are other concerns including infections, liver disease and kidney problems.
Children with short bowel syndrome are cared for by intestinal rehabilitation teams: special GI doctors, nurses, dietitians, and pharmacists dedicated to their care. With these teams, there are fewer complications and more successes in getting children to a point that IV nutrition support is no longer needed.
Is there a special diet for Short Bowel Syndrome?
Yes! Children with short bowel syndrome need to be very careful about not eating too much sugar, especially simple sugars. Your pediatrician will probably say that about all children but in children with short bowel syndrome, sugar is more of a problem. When we eat lots of sugar, it draws fluid into the intestine which can worsen diarrhea and make it even harder for children with short bowel syndrome to absorb their calories and nutrients. It is important to know that foods labeled “low sugar” or “sugar free” are not all okay for children with short bowel syndrome. The sugar is often substituted with sugar alcohols which can cause the same problems.
This diet can be challenging for school age kids or even younger siblings but is important. The team who helps take care of patients with short bowel syndrome usually has a dietitian who can help guide families and provide tips for safe sugar substitutions for recipes such as birthday cakes.
Parents of kids with Short Bowel Syndrome aren’t alone!
Taking care of children with complex medical problems can be stressful and tiring. While short bowel syndrome is not a very common childhood diagnosis, you are not alone and there are resources to help you. The mental health of parents and caregivers is just as important as the care that is provided to children with complex medical needs. The medical team can help guide and link you to support resources.
Molly C. Dienhart, MD, is an attending physician in the Division of Gastroenterology, Hepatology and Nutrition at Nationwide Children's Hospital and an Assistant Professor of Clinical Pediatrics at The Ohio State University College of Medicine. She is the Medical Director of the Center for Intestinal Rehabilitation and Nutrition Support and the Medical Director of the Nutrition Support Service.
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