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Short Bowel Syndrome

Short bowel syndrome, also known as SBS, is a rare, serious, and chronic malabsorption condition where patients are unable to absorb enough nutrients and fluids from the food they eat due to the surgical removal of a large part of the intestines. Characterized by diarrhea, dehydration and electrolyte disturbances, SBS is typically the result of chronic malabsorption following the removal of a large part of the intestines (a bowel resection).1-3

Some patients with SBS receive an ostomy, which is a surgical opening created through the skin in the belly (abdomen) for the elimination of body wastes. The amount of bowel that is removed and the function of the remaining bowel play an important role for patients affected by SBS.1, 4

Resources And Organizations

The following resources are available to provide support for disease awareness and education. Always speak with a physician or healthcare provider regarding any questions.

For US and International Residents

ShortBowelSyndrome.com

The following organizations and services may be a resource for information and support for patients, families, and caregivers. *

TheOleyFoundation The Oley Foundation

Oley provides resources to consumers dependent on home parenteral (IV) and enteral (tube-fed) nutrition.

ShortBowelSyndromeFoundation Short Bowel Syndrome Foundation, Inc. (SBSF)

The Short Bowel Syndrome Foundation strives to educate, support, and empower patients who live with SBS.

IFFGD IFFGD

The IFFGD is a nonprofit organization dedicated to helping those affected by chronic digestive conditions.

EURORDIS Voice of Rare Disease Patients in Europe

EURODIS is a global, patient-driven alliance of over 600 rare disease patient organizations.

NORD National Organization for Rare Disorders

NORD is a US-based federation of health organizations dedicated to helping people with rare diseases.

Aspen ASPEN (American Society for Parental and Enteral Nutrition)

The ASPEN patient information center was designed to provide patients and caregivers with information about nutrition support, including parenteral and enteral nutrition.

PINNT PINNT

PINNT is a UK-based organization that supports patients on intravenous and naso-gastric nutrition treatment.

UOAA United Ostomy Associations of America

The UOAA supports, empowers, and advocates for people affected by ostomy or continent diversion surgery.

References

  1. Hofstetter S, Stern L, Willet J. Key issues in addressing the clinical and humanistic burden of short bowel syndrome in the US. Curr Med Res Opin. 2013;29(5).
  2. Short Bowel Syndrome. National Organization for Rare Disordershttps://rarediseases.org/rare-diseases/short-bowel-syndrome/. Published 2011 and 2014. Accessed Sept. 22, 2015.
  3. Buchman AL, Scolapio J, Fryer J. AGA technical review on short bowel syndrome and intestinal transplantation. Gastroenterology 2003;124:1111–34.

*Shire provides funding to the above organizations in support of efforts that include, but are not limited to, research, education, meetings/events, and patient support.

Registered Charity: 1157655

 

S28274 - 03/17

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