[China Tech] Shanghai Doctors Set World Survival Record for Short Bowel Syndrome

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Doctors at Shanghai Ninth People's Hospital announced a record-breaking achievement: Through precise rehabilitation and lifelong health management, they have supported a woman with short bowel syndrome to survive for 35 years – the longest known survival of its kind in the world based on publicly available reports.

The patient, now 61 years old, has overcome the life-threatening condition and maintained a high quality of life, including giving birth to a daughter during her long-term care. Recently, when she returned to the hospital for a comprehensive check-up, the medical team held a small celebration to mark the 35-year journey of doctor-patient collaboration and sustained health.

"The examination confirmed she is in good health," said Dr Li Yousheng, director of the hospital's No. 1 general surgery department.

Short bowel syndrome is a rare disorder in which the body cannot absorb sufficient nutrients due to the absence or damage of a large portion of the small intestine, which normally measures 5 to 6 meters. The condition is typically managed through parenteral feeding, intravenous nutrition and rehabilitative therapy – approaches often accompanied by significant side effects.

The patient developed acute small intestine obstruction and necrosis 35 years ago. After emergency surgery, only 30 centimeters of her small intestine remained, far below what is needed to absorb adequate nutrition. Diagnosed with short bowel syndrome and in critical condition, she sought help from several hospitals before coming under the care of Dr Li.

Li's team designed a personalized postoperative rehabilitation plan focusing on enhanced nutritional support, intestinal function training, and complication prevention. Over time, she recovered steadily and was able to leave the hospital.

"She gradually weaned off parenteral nutrition and now lives on a normal diet supplemented with enteral nutrition – essentially leading a regular life," Li explained. His team has provided continuous follow-up, treatment and guidance throughout the past 35 years.

Globally, the incidence of short bowel syndrome ranges from 0.3 to 4 cases per million people and continues to rise. The five-year survival rate worldwide for adult patients is between 61 percent and 82 percent, while those without standardized treatment and management have a survival rate of 60-70 percent. Proper long-term management can significantly improve outcomes.

In China, the disease has been included in the national rare disease list, promoting the standardization of clinical practice and the improvement of patient support systems.

"Treating short bowel syndrome is highly complex and requires long-term follow-up and strong family cooperation," Li emphasized. His team's expertise in intestinal failure has become a hallmark of the hospital, attracting patients from across China and abroad.

"We have established a comprehensive patient management system that covers precise diagnosis and treatment, continuous follow-up and tailored post-examination guidance – all aimed at helping patients achieve long-term survival and a good quality of life," he said.

The team has integrated concepts such as damage control surgery, enhanced recovery after surgery, and individualized nutritional support into the treatment of intestinal injuries, Crohn's disease and enteric fistulas. This approach has shifted the focus from mere nutritional replacement to functional restoration.

"We have treated several overseas patients who come to Shanghai for conditions like enteric fistula – a common surgical complication – and Crohn's disease. Some had undergone multiple unsuccessful surgeries overseas and were referred to us by doctors or former patients," Li added.