Short Gut Syndrome Patient, Family & Professional Support Groups

Q: Is the prognosis for short bowel syndrome as bad as the doctors make it sound?

Short bowel syndrome (SBS) is a rare condition that affects only an estimated 10,000-20,000 people in the United States. 1 This means that many doctors have seen few, if any, patients with SBS in their careers.

Most knowledge about SBS comes from journal articles and interactions with a handful of patients. In the fast-changing world of medicine, that creates an opportunity for out-of-date knowledge.

Short bowel syndrome can have serious health consequences. Unless the intestine adapts, patients can't take in enough nutrition and hydration, so they rely on nutrition support, often in an intravenous form called TPN. Long-term TPN puts patients at risk of blood infections and liver damage. However, treatment options have changed dramatically over the past 50 years. 2

While previously outcomes were poor, care has evolved so that long-term life expectancy is typical, even for patients with little bowel remaining. 3 Successful medical and surgical treatment options are available. There are better ways to manage TPN and its complications. New treatments and medicines are available, and others are on the horizon. With time and treatment from a qualified medical team, many patients reduce or eliminate the need for TPN and tube feeding. 4 The majority of patients receive treatment at home. 2 Although adjustments and precautions are needed to live with their disease, short bowel syndrome can become a part of normal life.

It is difficult to measure the outcomes for short bowel syndrome based on past data because care is constantly improving. The future of SBS care is filled with hope.


  1. According to a 2023 Market share study, there were 14,000 affected people in the United States
    Short Bowel Syndrome - epidemiology forecast - 2034. Research and Markets Ltd 2024. Retrieved March 2, 2024, from
  2. Cohran VC, Prozialeck JD, Cole CR. Redefining short bowel syndrome in the 21st century. Pediatr Res. 2017 Apr;81(4):540-549. doi: 10.1038/pr.2016.265. Epub 2016 Dec 20. PMID: 27997531.
  3. Wendel D, Javid PJ. Medical and Surgical Aspects of Intestinal Failure in the Child. Surg Clin North Am. 2022 Oct;102(5):861-872. doi: 10.1016/j.suc.2022.07.015. Epub 2022 Sep 13. PMID: 36209751.
  4. DiBaise, J. K., Iyer, K., & Rubio–Tapia, A. (2022). AGA Clinical Practice Update on Management of Short Bowel Syndrome: Expert Review. Clinical Gastroenterology and Hepatology, 20(10), 2185-2194.e2.
  5. Neumann ML, Allen JY, Kakani S, Ladner A, Rauen MH, Weaver MS, Mercer DF. A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing. J Pediatr Surg. 2022 Sep;57(9):149-157. doi: 10.1016/j.jpedsurg.2021.09.039. Epub 2021 Oct 1. PMID: 34702565.

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