Acknowledgements

This book exists because of the collective wisdom, courage, and generosity of the adult short bowel syndrome and intestinal failure community.

First and foremost, I thank every adult living with SBS and intestinal failure who has shared their story, answered surveys, joined support groups, testified, reviewed drafts, or simply shown up for one another. Your lived experience is the foundation of every page.

Special gratitude goes to the members of the Short Bowel Syndrome Foundation Adult Support Group and the wider SBSF community whose insights shaped the practical, emotional, and advocacy sections of this guide.

I am deeply grateful to the SBSF board, staff, and volunteers for their unwavering commitment to adult patients and for creating the space in which this work could grow. The Foundation’s Educational Hub, resource library, and advocacy efforts provided both the inspiration and many of the concrete tools reflected here.

An essential partner and resource. Their decades of work supporting people on home parenteral and enteral nutrition, their patient education materials, webinars, and commitment to community have informed and strengthened this book. Special acknowledgment of the Short Bowel Syndrome Patient Community Guide and the collaborative spirit that has long characterized Oley’s relationship with patient leaders.

I thank the clinicians, dietitians, nurses, pharmacists, social workers, and researchers who have dedicated their careers to improving care for adults with intestinal failure. Your willingness to listen to patients, include us in guideline development, research design, and education, and treat lived experience as expertise has made better care possible. Special appreciation goes to those who serve in multidisciplinary intestinal failure and rehabilitation centers and who continue to push for adult-specific standards.

I acknowledge the professional societies whose guidelines and educational resources underpin evidence-based practice — particularly the European Society for Clinical Nutrition and Metabolism (ESPEN) and the American Society for Parenteral and Enteral Nutrition (ASPEN).

To the partners in industry, rare-disease advocacy (including the National Organization for Rare Disorders), and policy circles who have engaged with patients as true collaborators rather than subjects: thank you for recognizing that meaningful progress requires our voices at the table.

Finally, I thank my own family, friends, and chosen family for the patience, practical support, and steady belief that made the long work of writing and advocacy sustainable.

Any errors or omissions that remain are my own. The strengths of this book belong to the community that made it possible.

Andrew Jablonski & The Short Bowel Syndrome Foundation, Inc.