Intestinal Failure

Intestinal Failure

Intestinal failure occurs when your child's intestines can't digest food and absorb the fluids, electrolytes and nutrients essential to live and for normal growth and development. Intestinal failure is most often caused by short bowel syndrome, a problem affecting people who have had half or more of their small intestine removed due to injury or surgery to treat conditions such as trauma or necrotizing enterocolitis. Intestinal failure also may be caused by digestive disorders, such as Crohn's disease or chronic idiopathic intestinal pseudoobstruction syndrome, which causes the bowel to malfunction.

If your child has intestinal failure, he or she may receive all or most of their nutrients and calories intravenously through total parenteral nutrition (TPN). TPN is given through a catheter placed in the arm, groin, neck or chest. Patients on TPN may live for many years, but long-term use of TPN can result in serious complications, such as bone disorders, central venous catheter infections and liver disease. Our goal is to restore your child's intestinal function to minimize and ultimately eliminate the need for TPN. Unfortunately, not every child can be weaned from TPN. In these cases, we work to optimize the use of TPN and decrease the risk of complications.

Referrals

Patients who are referred to the Intestinal Rehabilitation and Transplantation Program may include:

Children with intestinal failure caused by:

• Aganglionosis, also known as Hirshsprung's disease
• Diseases of the intestinal surface, such as congenital villous atrophy or microvillus inclusion disease
• Gastroschisis
• Intestinal atresia
• Midgut volvulus
• Multiple intestinal surgeries resulting in adhesions and problems with motility and/or absorption
• Necrotizing enterocolitis
• Pseudoobstruction and other motility disorders
• Short bowel syndrome

Adults with intestinal failure caused by:

• Desmoid tumor, a benign growth of tissue that can develop in the abdomen
• Fistulae or an abnormal duct that connects an abscess, cavity or hollow organ to the body surface or to another hollow organ
• Inflammatory bowel disease, such as Crohn's disease where chronic inflammation occurs in the intestines
• Multiple intestinal surgeries resulting in adhesions and problems with motility that may lead to abnormal intestinal contractions and spasms
• Pseudoobstruction that impairs gastrointestinal motility despite the absence of an actual obstruction
• Radiation enteritis, a disorder of the large and small bowel that occurs during or after a course of radiation therapy to the abdomen, pelvis or rectum
• Refractory celiac disease, also known as sprue or a digestive disease that damages the small intestine and interferes with absorption of nutrients from food
• Superior mesenteric artery/vein thrombosis
• Trauma
• Tumor resection
• Volvulus or an abnormal rotation of the intestine

Evaluation

Children who have been referred to our Intestinal Rehabilitation and Transplantation Program must complete an evaluation process before qualifying for the program. Our team reviews each child's complete medical history, including their primary diagnosis, previous surgeries, previous treatments and current nutritional status to determine whether they will benefit from intestinal rehabilitation.

The patient evaluation process includes:

• Consultations with a gastroenterologist and nurse practitioner, surgeon, nutritionist and social worker
• Laboratory tests
• Radiological tests
• Additional tests when necessary, such as endoscopy with biopsy, gastrointestinal motility testing, breath hydrogen testing for bacterial overgrowth or malabsorption and imaging tests, such as abdominal CT scan

After the evaluation process is completed, our team determines if your child should be admitted into the Intestinal Rehabilitation Program. If he or she is admitted, a comprehensive, individual treatment plan is designed to best meet their needs.

Services

The Intestinal Rehabilitation and Transplantation Program offers a wide range of services for adults and children. Our team of experts includes pediatric doctors, surgeons, dietitians, nurses, child life specialists, social workers and pharmacists who will assess your child's individual needs and develop a treatment plan that best meets those needs. The type and length of treatment differs for each child, depending on their needs and goals.

Services include:

• Counseling and education about intestinal rehabilitation
• Drug and diet modification to train the small intestine to absorb more nutrients
• Consultations to help assess and correct nutrient deficiencies and prevent damage to kidneys, bones and liver
• Management of TPN to avoid complications
• Placement of catheters in veins called central venous lines and management of these catheters
• Surgery, such as bowel lengthening and tapering that can help increase bowel length and nutrient absorption
• Intestinal transplants
• Consultations with doctors caring for patients with intestinal failure

For patients dependent on TPN, the program provides services to help patients:

• Reduce or eliminate the need for TPN
• Reduce complications associated with TPN
• Decrease diarrhea and/or vomiting
• Gain weight
• Decrease the need for intestinal transplantation