Intestinal Failure and Transplant Information

What is Intestinal Failure?

Intestinal failure is the inability to meet the nutritional and/or fluid requirements in order to maintain nutritional independence necessary for growth and development in children, and maintenance of a normal life in adults. Intestinal failure may result from congenital abnormalities, or as a complication from either a poorly functioning intestine such as chronic idiopathic intestinal pseudo-obstruction syndrome or a surgically-resected intestine. Individuals with intestinal failure require parenteral nutrition (PN).

Intestinal Failure Patient Resources

What causes Intestinal Failure?

The causes of intestinal failure are very much age-dependent. Some conditions are more closely associated with pediatric intestinal failure while others are more common with intestinal failure in adults.

Causes of intestinal failure in children:

  • Congenital malformations such as:
    • Infants born with the intestines outside of the body (Small Bowel Gastroschisis)
    • Infants born with shortened intestines (Atresia)
    • Absence of nerve cells that stimulate contraction for proper function (Hirschsprung Disease)
  • Short bowel syndrome following extensive bowel surgeries to repair severe twisting of the intestine (e.g., Midgut Volvulus), or life threatening intestinal infection and inflammation (Necrotizing Enterocolitis (NEC))
  • Disorders that inhibit absorption (e.g., Microvillus Inclusion Disease, or problems that affect the way the intestine contracts/motility such as Chronic Intestinal Pseudo-Obstruction)

Causes of intestinal failure in adults:

  • Short bowel syndrome following extensive surgery for Crohn’s disease or mesenteric venous or arterial thrombosis./embolism (blockages of the intestinal veins or arteries)
  • Twisting of the intestine (Volvulus)
  • Inflammatory bowel disease (e.g., Crohn’s disease)
  • Small bowel tumors (e.g. Gardner’s syndrome)
  • Soft tissue tumors occurring in the abdominal wall, mesentery, or retroperitoneum (Desmoid tumors)
  • Disorders associated with mobility/contraction or malabsorption of nutrients (e.g., chronic intestinal pseudo-obstruction, scleroderma, radiation-damaged bowel)

What are the complications of intestinal failure?

  • Malnutrition
  • Dehydration
  • Vitamin, electrolyte and mineral deficiencies
  • Liver disease
  • Blood infections
  • Gallstones
  • Osteoporosis
  • Kidney damage
  • D-lactic acidosis
  • PN
  • Blood clots

Intestinal Failure Management

Managing Short Bowel Syndrome patients and other long-term PN patients is complex and can result in complications such as; liver injury, including end stage liver disease (ESLD), biliary problems (gallbladder and ducts), kidney problems and infections related to the intravenous nutrition therapy. Clinicians at the center have the experience to deliver specialized care designed to prevent life these complications, and manage them if they occur.

  • Medical interventions to improve quality of life and minimize complications related to intestinal failure
  • Multidisciplinary collaboration among physicians and surgeons who are world- renowned leaders in liver and intestinal treatments
    Optimal management of PN and diet
  • Intestinal rehabilitation to reduce or eliminate the need for PN
  • Patient education on proper catheter care and PN use to minimize complications and hospitalizations
  • Cutting-edge research and participation in clinical trials that may lead to advances in therapy
  • Living donor transplantation
  • Isolated intestine, combined liver-intestine, and multivisceral transplantation
  • Ongoing communication with referring physicians
  • Ostomy care
  • Medical and surgical management of complex fistulas

Intestinal Failure Patient Resources

Educational Resources

The following links are great student, patient, and family resources to provide more information on Intestinal Failure & Rehabilitation.

How to Do My HPN – Oley Foundation

Basic GI Education – American College of Gastroenterology

PEN and My HPEN Education

Roundtable Expert Discussion on Short Bowel Syndrome Management