Short-bowel syndrome – Basic Information

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Short bowel syndrome is a challenging condition that occurs when a person’s body cannot absorb enough nutrients and fluids from food because a significant portion of their small intestine is missing or damaged. This can happen after surgery or because of problems present from birth, and it can dramatically change how someone eats, drinks, and manages their daily health.

What Happens Inside the Body

To understand short bowel syndrome, it helps to know what normally happens during digestion. The small intestine is a long tube in your digestive system where most of the breakdown and absorption of food takes place. In a healthy adult, this organ typically measures between 275 and 850 centimeters in length. Each day, approximately 9 liters of fluid pass through the small intestine in the form of what you drink, your saliva, and secretions from your stomach, liver, and pancreas. The small intestine normally absorbs about 7 liters of this fluid, while the large intestine takes care of the remaining 2 liters.[2]

The small intestine has three main sections. The first part, called the duodenum, is the shortest section and sits right next to the stomach. The middle section is the jejunum, and the longest section is the ileum, which connects to the large intestine. Different parts of the small intestine have specialized jobs. Most nutrients are absorbed in the first 100 centimeters of the jejunum, while vitamin B12 and substances called bile salts are absorbed in the last 100 centimeters of the ileum. Magnesium is absorbed in the terminal ileum and the beginning of the colon, and water and sodium absorption happen throughout the entire bowel.[2]

The small intestine is remarkably efficient, and normally you are born with more length than you strictly need as a kind of reserve. If surgery removes your duodenum and part of your jejunum, your ileum can often take over the job of absorbing nutrients. However, if a substantial part of your jejunum or ileum is removed, it becomes very difficult to get adequate nutrition because the path that food travels to break down and be absorbed is much shorter.[3]

Understanding the Condition

Short bowel syndrome is defined differently depending on the source, but generally it refers to having less than 180 to 200 centimeters of remaining small bowel, which leads to the need for nutritional and fluid supplements. This is a functional definition, meaning it’s not just about the length of intestine you have left, but whether your body can maintain proper nutrition, fluids, and balance of minerals while eating a normal, healthy diet.[2][20]

When you have short bowel syndrome, your body struggles to absorb the nutrients, water, and minerals it needs from food and drink. This creates a condition called malabsorption, which means that even if you eat enough food, your body isn’t able to pull out and use the calories, vitamins, minerals, and other essential substances it needs to function properly.[4]

About 75% of cases develop after a single, massive removal of bowel during surgery, while the remaining 25% occur after multiple surgeries over time. Around two-thirds of patients who develop short bowel syndrome survive their initial hospitalization, and a similar number survive their first year after developing the condition. A person’s age and the underlying disease that led to the bowel loss are primary factors that determine long-term outcomes.[2]

How Common Is It

Short bowel syndrome is considered a rare condition. The exact number of people affected is difficult to determine because it is not well documented, but estimates suggest that between 10,000 and 20,000 people in the United States currently have this condition. The number of new cases each year is approximately 3 per million people.[5][7]

The condition can affect both adults and children, though the causes differ between these age groups. In children, short bowel syndrome is rare, but when it does occur, it can have significant effects on growth and development. Studies have shown that the number of people living with short bowel syndrome has increased by more than two times over the past 40 years, likely due to improvements in medical care that help people survive conditions that previously would have been fatal.[7]

In the United States, the prevalence is approximately 30 cases per million people. In Europe, the rate is lower at approximately 1.4 cases per million, though this varies widely between different countries.[7]

What Causes Short Bowel Syndrome

The fundamental cause of short bowel syndrome is having a short bowel, either because part of it was removed or because it didn’t develop properly. The two main paths to developing this condition are surgical removal of large portions of the small intestine or being born with portions of the small intestine missing or damaged.[1]

In adults, the most common reasons for needing surgery to remove large parts of the small intestine include Crohn’s disease (a type of inflammatory bowel disease that causes inflammation in the digestive tract), cancer, traumatic injuries to the abdomen, and problems with blood flow to the intestines. Blood clots in the arteries that supply blood to the intestines, called mesenteric ischemia, can cause tissue death that requires removal. Damage from radiation treatment for cancer, complications after previous surgeries, repeated intestinal blockages, and twisting of the intestine (called volvulus) are other causes.[1][6][13]

Previous abdominal surgery is actually a leading cause of short bowel syndrome, accounting for up to 50% of cases. This can happen when complications develop after an initial surgery, requiring additional operations that result in removal of more intestine.[13]

In children, the causes are quite different from adults. Short bowel syndrome in children most often develops from conditions present at birth or conditions that develop shortly after birth. The most common cause in premature infants is a condition called necrotizing enterocolitis, which occurs when the lining of the intestinal wall becomes inflamed and dies. Other causes in children include abdominal wall defects (such as gastroschisis, where the intestines develop outside of the body before birth), blockages or missing sections in the intestine (called intestinal atresia), twisting of the intestine (volvulus), and a condition called Hirschsprung’s disease where nerve cells are missing in parts of the intestine.[3][4]

⚠️ Important
Not everyone who has a large portion of their small intestine removed will develop short bowel syndrome. Important factors that determine whether the syndrome develops include how long the small bowel was before the surgery, which specific segment of intestine was lost, the person’s age at the time of bowel loss, how much small bowel and colon remains, and whether a structure called the ileocecal valve (which connects the small and large intestines) is still present.

Who Is at Higher Risk

Certain groups of people and certain medical conditions put individuals at higher risk for developing short bowel syndrome. Adults with inflammatory bowel diseases, particularly Crohn’s disease, are at increased risk because these conditions can damage the intestines and may require surgical removal of affected sections. A recent national study showed that 1% of patients with Crohn’s disease have short bowel syndrome.[7]

People who experience trauma to the abdomen from accidents or injuries are at risk if the damage to the intestines is severe enough to require removal of large sections. Those who develop problems with blood flow to the intestines, whether from blood clots, narrowed arteries, or other vascular issues, may need emergency surgery that results in short bowel syndrome.[4]

Individuals who have had multiple abdominal surgeries face increased risk. Each surgery can result in complications, scar tissue, or blockages that may require additional operations and further removal of intestine.[13]

Premature infants are at particular risk for developing necrotizing enterocolitis, the most common cause of short bowel syndrome in newborns. Babies born with birth defects affecting the digestive system, such as missing or blocked sections of intestine or abdominal wall defects, are also at higher risk.[4]

People undergoing radiation therapy for cancer in the abdominal or pelvic area may develop radiation damage to the intestines that can lead to short bowel syndrome, either from the radiation itself creating a functional loss of intestine or from needing surgery to remove damaged sections.[6]

Common Signs and Symptoms

The symptoms of short bowel syndrome stem from the body’s inability to properly absorb nutrients and fluids. The most prominent and common symptom is diarrhea, which can be severe and frequent. In people with an ostomy (a surgical opening in the abdomen where intestinal contents are collected in a bag), high output is typical, meaning more than 8 cups or 1500 milliliters of fluid in a 24-hour period.[1][5]

Stools are often loose, watery, and may be greasy and foul-smelling. This type of stool, called steatorrhea, occurs because fats are not being properly absorbed and pass through the digestive system unchanged.[1]

Many people with short bowel syndrome experience significant fatigue and tiredness. This happens because their bodies are not getting enough calories and nutrients from food, even if they eat large amounts. Weight loss is common and can be severe, as the shortened intestine cannot absorb adequate nutrition to maintain body weight.[1][5]

Bloating and excessive gas are frequent complaints. The abdomen may feel uncomfortably full or distended. Stomach pain and cramping can occur as the digestive system tries to process food with reduced capacity.[3][5]

Dehydration is a serious concern with short bowel syndrome. Signs of dehydration include dark-colored urine, infrequent urination, excessive thirst, and muscle cramping. Some people develop visible swelling in their legs and feet, called edema, which can result from low protein levels in the blood due to malabsorption.[1][4]

People with short bowel syndrome often experience changes in their bowel habits and may develop heartburn or acid reflux. Vomiting can occur in some cases. Because the body struggles to absorb vitamins and minerals, symptoms related to specific deficiencies may develop, such as easy bruising, muscle spasms, anemia, and problems with bone health.[5][7]

In children with short bowel syndrome, poor growth is a significant concern. Infants and children may fail to gain weight appropriately and may experience developmental delays due to inadequate nutrition.[4]

Preventing Short Bowel Syndrome

Because short bowel syndrome results from surgical removal of the small intestine or congenital problems, prevention focuses on managing conditions that might lead to intestinal damage and avoiding complications that would require surgery.

For people with inflammatory bowel diseases like Crohn’s disease, working closely with healthcare providers to manage inflammation and prevent disease progression is crucial. This includes taking prescribed medications as directed, attending regular follow-up appointments, and reporting new or worsening symptoms promptly. Good disease control can sometimes prevent the need for surgery or reduce the amount of intestine that needs to be removed.[6]

In cases of traumatic injury, immediate and appropriate emergency medical care can be life-saving and may help preserve as much healthy intestine as possible. Wearing seatbelts properly (including both lap and shoulder belts) can reduce the severity of abdominal injuries in car accidents.[18]

For pregnant women, proper prenatal care can help identify problems with fetal development early. Some congenital conditions that lead to short bowel syndrome can be detected during pregnancy, allowing for planning and preparation for specialized care immediately after birth.[3]

In premature infants at risk for necrotizing enterocolitis, careful feeding strategies and close monitoring in the neonatal intensive care unit can help reduce risk, though not all cases can be prevented.[4]

How the Body Changes with Short Bowel Syndrome

Short bowel syndrome causes profound changes in how the digestive system works. Understanding these changes helps explain why the condition creates so many challenges for those affected.

When a large portion of the small intestine is removed, the remaining intestine must try to compensate for the lost absorptive surface area. The body has a natural adaptation process where the remaining intestine can actually change over time to become more efficient at absorption. The lining of the intestine may thicken, and the finger-like projections called villi that line the intestinal wall may grow longer. This process, called intestinal adaptation, is an important goal in managing short bowel syndrome. In adults, this adaptation phase typically lasts about 2 years, while in children it may take longer.[5][10]

However, this natural adaptation is often not sufficient to fully compensate for the loss of intestine. The shortened bowel means food passes through more quickly, giving less time for nutrients and fluids to be absorbed. This rapid movement through the digestive system contributes to diarrhea and malabsorption.[13]

The changes in absorption affect different nutrients in different ways. Water and salt balance becomes disrupted because the intestine cannot reabsorb the large volumes of fluid that enter the digestive system each day. This leads to dehydration and imbalances in important minerals called electrolytes, including sodium, potassium, and magnesium. These imbalances can cause serious problems like muscle weakness, irregular heart rhythms, and other complications.[4]

Fat absorption becomes particularly problematic, especially if the ileum has been removed. The ileum normally reabsorbs bile salts, which are necessary for fat digestion. Without adequate bile salt reabsorption, fats cannot be properly broken down and absorbed, leading to greasy, foul-smelling stools and deficiency of fat-soluble vitamins (vitamins A, D, E, and K).[2]

Vitamin B12 absorption requires a specific section of the ileum, so removal of this area leads to B12 deficiency, which can cause anemia and nerve problems. The absorption of other vitamins and minerals including iron, calcium, zinc, and folic acid is also impaired, leading to various deficiency symptoms.[7]

Changes in the bacterial population of the intestine can occur with short bowel syndrome. An overgrowth of bacteria in the small intestine, called small intestinal bacterial overgrowth, can develop and further worsen malabsorption and contribute to symptoms like bloating and diarrhea.[5]

The presence or absence of the colon plays a significant role in how the body adapts. If the colon remains intact and connected to the remaining small intestine, it can provide additional help with fluid and electrolyte absorption. The colon can also use bacteria to ferment carbohydrates that weren’t absorbed in the small intestine, producing compounds called short-chain fatty acids that can provide an additional 500 to 1000 calories per day and help nourish the intestinal lining.[19][20]

Stomach acid production often increases in people with short bowel syndrome, which can damage the remaining intestine and further impair absorption. This increased acid also contributes to symptoms like heartburn and can cause ulcers.[13]

⚠️ Important
The length of remaining small bowel and whether the colon is intact are the most critical factors in predicting whether someone will need long-term nutritional support. Generally, people need less than 50 to 70 centimeters of small bowel connected to the colon, or less than 100 to 150 centimeters without the colon, to become dependent on nutrition delivered through a vein.

Ongoing Clinical Trials on Short-bowel syndrome

  • Study of glepaglutide compared to placebo for patients with short bowel syndrome with intestinal failure

    Recruiting

    1 1
    Investigated diseases:
    Investigated drugs:
    Austria Belgium Czechia Denmark Finland France +8
  • Study on How Apixaban and Teduglutide Affect Patients with Short Bowel Syndrome on Long-Term Parenteral Nutrition

    Recruiting

    1 1 1 1
    Investigated diseases:
    Investigated drugs:
    Belgium
  • Study on the Effects of Rivaroxaban in Patients with Short Bowel Syndrome on Long-Term Parenteral Nutrition

    Recruiting

    1 1 1 1
    Investigated diseases:
    Investigated drugs:
    The Netherlands
  • Study of HM15912 for Adults with Short Bowel Syndrome-associated Intestinal Failure

    Recruiting

    Investigated diseases:
    Belgium Denmark France Germany Poland
  • Study on Crofelemer for Adults with Short Bowel Syndrome and Intestinal Failure Without Colon in Continuity

    Recruiting

    Investigated diseases:
    Investigated drugs:
    Germany Italy
  • A Study to Evaluate the Long-Term Safety of Glepaglutide in Adult Patients with Short Bowel Syndrome Who Participated in Previous Studies

    Not recruiting

    1 1 1
    Investigated diseases:
    Investigated drugs:
    Belgium France Germany Poland
  • Study on the Long-Term Safety of Glepaglutide for Adults with Short Bowel Syndrome

    Not recruiting

    1 1 1
    Investigated diseases:
    Investigated drugs:
    Belgium Denmark France Germany The Netherlands Poland
  • Study on the Long-Term Safety and Effectiveness of Glepaglutide for Patients with Short Bowel Syndrome

    Not recruiting

    1 1
    Investigated diseases:
    Investigated drugs:
    Belgium France Germany The Netherlands Poland
  • Long-term safety study of apraglutide (weekly injections) in patients with Short Bowel Syndrome

    Not recruiting

    1 1 1
    Investigated diseases:
    Investigated drugs:
    Belgium Czechia Denmark France Germany Hungary +5

References

https://www.mayoclinic.org/diseases-conditions/short-bowel-syndrome/symptoms-causes/syc-20355091

https://www.ncbi.nlm.nih.gov/books/NBK536935/

https://my.clevelandclinic.org/health/diseases/14725-short-bowel-syndrome-in-children

https://www.gattex.com/short-bowel-syndrome/

https://www.shortbowelsyndrome.com/what-is-sbs

https://emedicine.medscape.com/article/193391-overview

https://en.wikipedia.org/wiki/Short_bowel_syndrome

https://www.niddk.nih.gov/health-information/digestive-diseases/short-bowel-syndrome

https://www.mayoclinic.org/diseases-conditions/short-bowel-syndrome/diagnosis-treatment/drc-20450377

https://www.niddk.nih.gov/health-information/digestive-diseases/short-bowel-syndrome/treatment

https://www.shortbowelsyndrome.com/sbs-management

https://www.gattex.com/short-bowel-syndrome/

https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/management-of-short-bowel-syndrome-in-adult-patients/mac-20536579

https://www.shortbowelsyndrome.com/sbs-management

https://www.mskcc.org/cancer-care/patient-education/nutrition-guidelines-people-short-bowel-syndrome

https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/management-of-short-bowel-syndrome-in-adult-patients/mac-20536579

https://www.newcastle-hospitals.nhs.uk/resources/advice-for-people-with-short-bowel-syndrome/

https://www.ostomy.org/matts-story-living-life-intentionally-with-short-bowel-syndrome/

https://columbiasurgery.org/news/2016/11/16/short-bowel-syndrome-what-eat-and-drink

https://pmc.ncbi.nlm.nih.gov/articles/PMC5718176/

https://optioncarehealth.com/patients/resources/nutrition-tips-for-managing-short-bowel-syndrome

https://answers.childrenshospital.org/short-bowel-syndrome-follow-up/

FAQ

Can short bowel syndrome be cured?

Short bowel syndrome cannot be cured in the traditional sense, but it can be managed. Over time, the remaining intestine may adapt and become more efficient at absorbing nutrients, which can reduce dependence on nutritional support. Some patients may eventually be able to maintain their health through diet alone, while others may need long-term nutrition delivered through a vein or feeding tube. In severe cases, an intestinal transplant may be an option.

Will I need to be on intravenous nutrition forever?

Not everyone with short bowel syndrome needs permanent intravenous nutrition. Studies show that at 5 years after diagnosis, about 48% of patients still require this type of support. Whether you need long-term intravenous nutrition depends mainly on how much intestine remains, which parts were removed, and whether your colon is intact. Your intestine’s ability to adapt over the first 1 to 2 years also plays a major role.

What is the difference between parenteral and enteral nutrition?

Parenteral nutrition means receiving nutrients through a tube inserted into a vein, delivering nutrition directly into the bloodstream and bypassing the digestive system entirely. Enteral nutrition means receiving liquid food through a tube inserted into the stomach or small intestine, which still uses the digestive system for absorption. Many people with short bowel syndrome need one or both types of nutritional support.

How does short bowel syndrome affect children’s growth?

Children with short bowel syndrome often experience growth delays because their bodies cannot absorb enough nutrients and calories for normal development. This can affect both physical growth and developmental milestones. However, with proper nutritional support including specialized formulas, intravenous nutrition when needed, and careful monitoring by healthcare providers, many children with short bowel syndrome can achieve better growth outcomes and lead fulfilling lives.

Can I still eat normally if I have short bowel syndrome?

Most people with short bowel syndrome can eat, but they typically need to follow a specialized diet tailored to their specific situation. This often involves eating small, frequent meals, avoiding certain types of foods, and using specially formulated drinks to stay hydrated. The specific diet recommendations depend on how much intestine remains and whether you still have your colon. Working with a registered dietitian who specializes in this condition is essential for developing an appropriate eating plan.

🎯 Key takeaways

  • Short bowel syndrome is rare, affecting only about 10,000 to 20,000 people in the United States, but its impact on those affected is profound.
  • The small intestine normally measures between 275 to 850 centimeters, and having less than 200 centimeters remaining typically puts someone at risk for needing nutritional support.
  • About 75% of short bowel syndrome cases happen after a single major surgery, while 25% develop after multiple operations over time.
  • The remaining intestine can adapt over time to become more efficient at absorbing nutrients, with this process taking about 2 years in adults.
  • Whether you still have your colon makes a huge difference in outcomes, as the colon can help absorb fluids and even generate hundreds of extra calories per day.
  • Drinking plain water can actually worsen dehydration in people with short bowel syndrome, making specially formulated oral rehydration solutions crucial for staying hydrated.
  • The causes of short bowel syndrome differ dramatically between adults (usually Crohn’s disease or vascular problems) and children (usually conditions present at or shortly after birth).
  • With advances in medical care, survival rates for people with short bowel syndrome have improved significantly, with many living for decades while managing the condition.