The Intestinal Rehabilitation Program team at Johns Hopkins All Children’s Hospital treats patients with short bowel syndrome, severe gastrointestinal dysfunction and intestinal failure.
Our program provides treatment and management for patients with intestinal disorders, including short bowel syndrome (also called intestinal failure or short gut syndrome). Children with short bowel syndrome require specialized nutritional support and long-term follow-up care.
Our patients receive follow-up care in our Intestinal Rehabilitation Clinic, which takes a team approach to treating our patients in an outpatient care setting. Patients receive care from our multidisciplinary CUIRE (Care Under Intestinal Rehabilitation Excellence) team, with specialists and subspecialists from across our hospital joining together to meet a patient's needs all in one location. Normally, our patients see a variety of these specialists in just one clinic visit.
We use an aggressive medical, surgical and nutritional approach to help increase intestinal adaptation and function and avoid transplants if at all possible. With this approach to treatment, many children with intestinal failure will experience intestinal adaptation, a process where the bowel will adapt and function enough to remove the IV nutrition.
Short Bowel Syndrome (SBS)
Short bowel syndrome is a condition caused by loss of function of the small intestine. The small intestine is an important part of the digestive tract. It’s where the body absorbs certain nutrition and fluids like vitamins, sugars, fats and minerals. If left untreated, SBS can lead to malnutrition and dehydration.
Short Bowel Syndrome Causes and Symptoms
Short bowel syndrome and intestinal failure can occur in a variety of ways, including an intestinal disorder at birth, intestinal trauma, loss of blood supply to the gut and surgical removal of large sections of diseased bowel.
Symptoms of short bowel syndrome are often related to the body’s inability to absorb food, including:
- Abdominal pain
- Dehydration
- Diarrhea
- Vomiting
- Weight loss
Disorders Associated with Short Bowel Syndrome
Our team cares for short bowel syndrome and intestinal failure resulting from the following disorders:
- Autoimmune enteritis
- Gastroschisis
- Hirschsprung disease
- Intestinal atresia
- Intestinal polyposis
- Intestinal pseudo-obstruction
- Microvillus inclusion disease
- Necrotizing enterocolitis (surgical NEC)
- Omphalocele
- Volvulus
Treatment Approach
Our team designs a rehabilitation and management plan for each patient and reviews the patient’s medical care with the referring team on a regular basis.
Our plan of care involves the following strategies:
Nutrition
Many patients with SBS require intravenous nutrition until the bowel recovers and functions properly. Intravenous nutrition uses a method called total parenteral nutrition (TPN), which provides nutrients through fluids in the vein. We focus on nutrition and TPN management to help minimize TPN-associated liver disease and maintain the patient’s normal growth. We coordinate nutritional and gastrointestinal care and develop a transition program for each patient. We track long-term neurodevelopmental and feeding outcomes in our Intestinal Rehabilitation Clinic located in the Outpatient Care Center on our main campus.
Monitoring
Our program is designed to monitor and manage each patient’s progress to ensure the best clinical outcomes. Our team follows patients from birth to discharge and monitors any hospital readmissions that involve intestinal complications. We manage procedures like serial transverse enteroplasty procedure (STEP). We monitor the patient closely to prevent and/or treat blood stream infections.
Surgery
The goal of surgery is to increase the quality and function of intestines and improve the patient’s nutrition, growth and development. We offer a range of surgical procedures, including serial transverse enteroplasty procedure. This procedure reshapes the small intestine and increases bowel length, which helps create more intestinal absorption.
Team Approach
Both inpatients and outpatients receive comprehensive care from a team of experts, including:
Follow-Up Care and Care at Home
We see patients in our Intestinal Rehabilitation Clinic for long-term follow-up care.
So that families can be the best caregivers possible, we provide them with extensive education and train them to recognize and manage their child’s care at home to help reduce hospitalization and clinic visits.
Research
We work with Johns Hopkins Medicine databases to use best practices for parenteral nutrition associated with liver disease (PNALD), also known as intestinal failure-associated liver disease, which can lead to liver failure and cirrhosis. Our team follows outcomes, and monitors and improves growth and long-term neurological outcomes of patients with chronic illnesses.
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