Short Bowel Syndrome and Intestinal Failure
Short bowel syndrome is when your child has trouble absorbing enough nutrients to stay healthy. This can happen due to damage to the small intestine, where most digestion and nutrient absorption take place. Damage to the small intestine can occur for several reasons:
Birth defects. In infants and young children, especially those born prematurely, a number of birth defects and other conditions can damage their intestines and keep them from getting the nutrients they need.
Part of the small intestine is missing at birth or has to be surgically removed. In older children, typical reasons for this surgery include injury to the abdomen or inflammation from Crohn's Disease.
Necrotizing enterocolitis. The most common cause of short bowel syndrome in infants, this condition destroys part of the tissue in the intestine, which then has to be removed.
Short bowel syndrome is a rare and challenging condition. At the Orlando Health Children's Arnold Palmer Hospital Center for Digestive Health and Nutrition, you’ll receive the most advanced care available for your child.
Symptoms
Symptoms of short bowel syndrome depend on how much of your child’s small intestine is missing or damaged. Since specific nutrients are absorbed in different parts of the small intestine, the location of the missing or damaged intestine also affects the symptoms.
Symptoms may include:
Watery diarrhea
Bloating
Vomiting
Cramping
Heartburn
Weight loss or failure to gain weight
Foul-smelling stool
Excessive gas
Fatigue
Weakness
Swelling in the legs
Diarrhea is the most common symptom of short bowel syndrome, and it can eventually lead to malnutrition and dehydration. Short bowel syndrome can also cause complications such as vitamin and mineral deficiencies, kidney stones and ulcers. In addition, an overgrowth of bacteria in the small intestine can make symptoms worse.
Diagnosis
If your child has symptoms of short bowel syndrome, the Orlando Health Children's Arnold Palmer Hospital Center for Digestive Health and Nutrition can help. Your child’s specialist will ask about their symptoms and when they began. They will also ask about any serious illnesses in other family members, and if your child has had intestinal surgery.
A physical exam can provide more information on your child’s condition, including signs of vitamin and mineral deficiencies, weight loss or muscle wasting. The doctor may also listen to your child’s abdomen with a stethoscope.
These tests can also help diagnose short bowel disease:
Blood tests. These are used to check for anemia, infections and other issues.
Imaging tests. X-rays, CT scans and ultrasound tests may be used to examine the intestine and other abdominal organs.
Barium study. During this test, your child swallows a chalky liquid called barium, which is then tracked through the upper part of digestive system with X-rays. This can show narrowing or widening of the intestines.
Fecal fat tests. This test measures the amount of fat in the stool to show how much fat the body absorbs during digestion.
Stool culture. This test can find bacteria, viruses and small amounts of blood in the stool.
Upper endoscopy. During this test, while your child is sedated, the doctor passes a thin, flexible tube with a camera through the mouth and into the stomach. This test can show inflammation, infection, ulcers and other problems.
Colonoscopy. Using a thin, flexible tube with a camera at the end, doctors examine the inside of the colon. Your child will be sedated during this test.
At the Orlando Health Children's Arnold Palmer Hospital Center for Digestive Health and Nutrition, our experts work together to determine which tests are needed for your child’s diagnosis . Your team will explain each test your child has, how to prepare for the test and what it may reveal. We understand your child may be wary of having any kind of test, and our nurses, doctors and technicians take time to reassure them. Whenever possible, you can be with your child during the test.
Treatments
Each child is different, and your team at the Orlando Health Children's Arnold Palmer Hospital Center for Digestive Health and Nutrition will design a plan to meet your child’s specific needs. The goal of every treatment plan is to make sure your child receives proper nutrition.
Your child’s treatment may include:
A special diet plan. Your child’s plan will be tailored to his or her needs and will likely include high-calorie foods with important vitamins and minerals and the right amounts of carbohydrates, proteins and fats. Small, frequent feedings often work best.
Vitamin and mineral supplements. Your child will need supplements to make sure he or she is getting enough vitamins and minerals, such as folic acid, iron and vitamin B12. Children who use total parenteral nutrition (supplying essential nutrients directly into the veins) can have these supplements through an injection.
Medications. Your team may prescribe medications to help prevent diarrhea, to decrease stomach acid or to slow the passage of food through the intestine. The longer food stays in the intestine, the more nutrients are absorbed. Your child may also take other medicines, depending on his or her needs.
Enteral nutrition. Some children with short bowel syndrome can’t eat normally, so they have liquid food delivered directly to their stomach through a small, soft tube threaded through the nose or mouth. In some cases, the tube is inserted directly into the stomach through an incision in the abdomen.
Total parenteral nutrition (TPN). For children who can’t absorb enough nutrients from food, TPN delivers a special formula containing fluids, nutrients, vitamins, minerals and electrolytes directly through a vein.
Oral rehydration. Special drinks can prevent dehydration, particularly in children who use total parenteral nutrition.
Surgery. Surgery may be used to correct an enlarged section of intestine, to prevent blockages or to slow the passage of food through the intestine.
Intestinal transplantation. If other treatments have failed, your team may recommend an intestinal transplant. With this procedure, the diseased or damaged intestine is removed and replaced with healthy intestine from a deceased donor. In some cases, the liver is transplanted along with the intestine. Orlando Health Children's Arnold Palmer Hospital offers pre and post-transplant care and have close established relationships with the transplant centers in Florida.
In some children who have had part of their intestine surgically removed, the remaining intestine undergoes changes that increase the surface area. This is called intestinal adaptation, and eventually, it can help the child absorb more nutrients from food.
Next Steps
Short bowel syndrome is a lifelong condition, and we understand that you need coaching on details such as feeding, watching for complications and helping older kids as they start school. Families also need ongoing support to help with the stress and emotional struggles that come with the condition.
Our psychologists, social workers and educators are ready to help with all these issues. We want you to succeed, and we provide the tools and support you need. Count on us for personalized, compassionate care every step of the way.
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