Additional Resources and Readings

These resources complement the Lived Experience Series. Visit the websites of the Short Bowel Syndrome Foundation and the Oley Foundation for the most current patient-centered tools, updates, and community resources.

Pironi L, Cuerda C, Jeppesen PB, et al. Clinical Nutrition. 2023;42(10):1940-2021. doi:10.1016/j.clnu.2023.07.019

Cuerda C, Pironi L, Arends J, et al. Clinical Nutrition. 2021. (Based on the 2016 ESPEN Guidelines on Chronic Intestinal Failure in Adults.)

Short Bowel Syndrome and Intestinal Failure clinical resources, guidelines, and educational materials.

Multi-media guides, checklists, and expert insights on the intestinal rehabilitation journey.

Materials on nutrition, mental health, insurance navigation, travel, laboratory and imaging, management of care, and complications of SBS.

Patient-oriented resources addressing the emotional and psychological dimensions of living with SBS and intestinal failure.

Information on evaluation and considerations for transplantation.

Practical patient guide to growth-factor therapy.

Personal stories from the SBS community and materials illustrating adult patient leadership in education, research, and system change.

Short Bowel Syndrome Patient Community Guide (Revised May 2024), Dietary Management for SBS, LifelineLetter articles, travel and hospital packets, and HPN resources.

Patient Conversation Guide and My SBS Appointment Checklist — developed in collaboration with patients, clinicians, and the Oley Foundation.

Oley Foundation / Medscape guidance on the transition from pediatric/adolescent to adult care systems.

Short Bowel Syndrome disease overview, patient assistance programs, and rare-disease advocacy infrastructure.

Key publications evaluating teduglutide in adults with short bowel syndrome and intestinal failure (including Gastroenterology 2012 and subsequent long-term extension studies).

Reviews of effectiveness and safety in adults with SBS-IF published in Clinical Nutrition and Nutrition in Clinical Practice (2023–2026).

“Starting Gattex: How to Work with Your Health Care Provider,” role of growth factors, and related webinars and slides.

Literature on health-related quality of life and patient-reported outcome measures in adults receiving home parenteral nutrition, including the Home Parenteral Nutrition–Patient-Reported Outcome Questionnaire.

Materials from the FDA Patient Listening Session on Short Bowel Syndrome — available at oley.org.

Materials on patient leadership, industry partnerships, and adult advocacy — including “Experts by Experience.”

Patient assistance resources and rare-disease advocacy tools.

For the most current patient-centered tools, updates, and community resources, visit shortbowelfoundation.org and oley.org.