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What to Know About Short Bowel Syndrome

Short bowel syndrome (SBS), which is also called short gut syndrome, is when the small intestine is not absorbing the right amounts of nutrients and fluids. It can happen because too much of the small intestine is missing or because it is not working as well as it should. Treatments for short bowel syndrome include medication, changes to diet, and surgery. SBS may be a permanent or a temporary condition. This article will discuss the symptoms and treatment of SBS, including medication and surgery used to treat the condition.

What to Know About Short Bowel Syndrome

What Is Short Bowel Syndrome (SBS)?

The purpose of the small intestine is to break down food and absorb vitamins, minerals, sugars, amino acids (the building blocks of protein), and fatty acids. The small intestine is like a tube. It is about 20 feet long in adults. It is located in the abdomen and runs between the stomach and the large intestine. Food is chewed and swallowed, then travels down the esophagus to the stomach. After it leaves the stomach, it passes through to the small intestine, where food is broken down; vitamins, minerals, and nutrients are taken up; and water is extracted to solidify food waste. The waste then passes to the colon, where more water is absorbed, and then it is passed out of the body as stool.


When the small bowel is shortened, it could lead to fewer vitamins and minerals being absorbed. The small intestine has different sections, each of which absorbs different nutrients. If one or more sections are missing or shorter than usual, they may not be able to absorb enough vitamins. This could lead to SBS. SBS has different definitions, but one commonly used is when someone has less than 200 centimeters (cm)—equal to about 79 inches or 6.5 feet—of small bowel. A child with SBS will usually have less than 25% of the length of a typical small bowel for their age. However, SBS could also occur in someone with more than 200 cm of bowel. This can happen if the bowel that is there isn’t absorbing nutrients well or is moving food through too quickly to absorb well. This is called functional SBS.


What Causes Short Bowel Syndrome?

In most cases, SBS occurs after there have been one or more surgeries on the small intestine. Surgery on the small bowel could be done to treat inflammatory bowel disease (IBD), cancer, or an injury.

There are a few other causes of SBS that are found in children. These include:

  • Gastroschisis: A condition that causes an infant to be born with their intestines outside of their abdomen

  • Intestinal atresia: When a person is born with a small intestine that is blocked or incomplete

  • Malrotation: When a baby is born with a twisted small intestine

  • Necrotizing enterocolitis: A condition that may occur in premature infants that causes damage to intestinal tissue

Short Bowel Syndrome Symptoms

The symptoms of SBS can include:

  • Abdominal pain

  • Bloating

  • Dehydration

  • Diarrhea

  • Fatigue

  • Gas

  • Loose, greasy, bad-smelling, or fatty stools

  • Malabsorption

  • Malnutrition

  • Weight loss

In people with an ostomy (surgery to create an opening in the abdomen through which stool can exit the body), a high output stoma—that is more than 1,500 milliliters (mL) per day, or about 6 cups of stool for three to five days—may also lead to symptoms of SBS.


How Is Short Bowel Syndrome Diagnosed?

There's not just one, single test that can help provide a diagnosis of SBS. Getting a diagnosis is a process that takes into consideration your health history, your history of surgeries, and your symptoms.


A combination of tests can help diagnose SBS, including:

  • Computed tomography (CT) scan: This scan uses multiple X-rays and a computer to create a detailed cross-section of the body. It may be done with contrast dye (given intravenously) to show problems with the liver and bowels.

  • Magnetic resonance imaging (MRI): Strong magnetic fields and radio waves are used to make an image of the abdomen and especially of the small intestine.

  • Stool tests: Diarrhea can be caused by several conditions. A stool test might rule out other problems (such as an infection).

  • Ultrasound: An ultrasound uses sound waves to create images. An ultrasound of the abdomen may be used to look for issues with the bile ducts or gallbladder.

  • Upper gastrointestinal (GI) series: This is a type of X-ray taken of the abdomen after drinking a barium solution. It helps to visualize the structures of the upper digestive system.

  • X-rays: Abdominal X-rays might be used to look for blockages or other problems with the bowels.

How Is Short Bowel Syndrome Treated?

SBS has three phases. An acute phase happens directly after the causative event (such as surgery). Then there is an adaptation phase where the body may learn to absorb more nutrients and water, which could last up to two years. Third is the chronic phase. In about half of people with SBS, the condition doesn’t reverse or improve enough to go without treatment. They may continue to need intravenous (IV) nutrition for a time. About 48% of people diagnosed with SBS still need to receive nutrition via an IV after five years. A variety of treatments might be used or needed for SBS.


Diet and Nutrition

Nutrition is important in SBS, but it might be difficult to take in enough food by mouth to get all the vitamins and minerals needed. Nutrition might be given in other ways for people in the acute phase of SBS. Parenteral nutrition is when nutrients, vitamins, minerals, and fluids are given through an IV. The IV might be placed in the arm or neck, or through a central vein under the collarbone. It might be used for either the short-term or the long-term. In the short term, parenteral nutrition might be started directly after having surgery on the bowel. Some people with chronic SBS may need parenteral nutrition at home.

Parenteral nutrition can be partial if some nutrients can be taken by mouth. It can also be total when the digestive system isn’t working at all. A specialist healthcare provider may help ensure the right nutrients are being given through parenteral nutrition. Enteral nutrition may also be used to get nutrients. It is given through a tube inserted into the stomach or the small intestine. The tube could be placed down through the nose for temporary use or through the abdomen for long-term use. It may be referred to as a feeding tube. A combination of parenteral or enteral feeding plus some food or liquid by mouth might be used in many cases of SBS. There is no specialized diet for all people living with SBS. However, there are some overall guidelines, such as these, that might be used when people can take in nutrition by mouth:

  • Avoid concentrated sugars, which can lead to diarrhea.

  • Eat five or more small meals a day rather than three big ones.

  • Take supplemental vitamins or minerals (as directed by a healthcare professional).

  • Drink an oral rehydration solution (ORS) to stay hydrated.

Meeting With a Dietitian People with SBS should have access to a nutrition specialist, such as a dietitian. Even one appointment can help people understand how best to support their nutrition while living with SBS. In some cases, regular appointments will be needed because nutrient needs will change as the SBS moves out of the acute phase.


Medication

Treating SBS includes ensuring nutrition is being managed and symptoms are treated. The effects of SBS could cause other issues, and some medications might be needed to treat those, as well. Treatment is individualized because each person with SBS will have different conditions and concerns. Some of the other drugs that might be used include:

  • Antibiotics for small bowel bacterial overgrowth

  • Lactase supplement to treat lactose intolerance

  • Pancreatic enzyme replacement therapy

Surgery

Surgery may lead to SBS, but it also might be necessary as a treatment. Various types of surgery might be used. Autologous intestinal reconstruction surgery (AIRS) may be used in SBS. It can be performed in several ways. The goal is to increase the length of the small intestine and improve absorption. Some procedures may be done by segmenting the small bowel and reconnecting it to increase the length. Others may use a part of the large bowel (if available) to supplement the small bowel. These surgeries are complicated and may be done by specialists at medical facilities designated as centers of excellence.

Intestinal transplantation is another surgical option. This is when the small intestine and possibly other digestive organs are replaced. It is generally reserved for people who have life-threatening SBS. Intestinal transplants are still uncommon and can cause complications. However, technique and five-year survival rates are improving.10


Lifestyle Changes

SBS is a complex condition. It is important to work closely with the healthcare team, which may include many members. Ask questions and be open about how SBS affects all aspects of your life. It may be difficult or even embarrassing at times, but being honest could help improve care. While coping with SBS, there may be times when it is necessary to lean on others for help and support. This can include family, friends, and the healthcare team. Asking for and accepting help in everything from getting to and from medical appointments to grocery shopping is important. Connecting with a patient support group is also useful. SBS is a rare condition, so it’s unlikely that you will know anyone else who is living with it. Meeting people with SBS and their families, virtually or in person, will help with stress and learning tips for day-to-day management. Working with a mental health professional may be helpful for people with SBS, as well. Counseling may be temporary or continue long term. It’s important for people with SBS and their families to get help in coping with the ups and downs of the condition.


What Complications May Develop From Short Bowel Syndrome?

The complications of SBS can include those that are from the condition as well as from needing nutritional care. They can include:

  • Diarrhea: Having loose stools can severely impact quality of life and make it difficult to go to school, work, or social functions. In addition, it can be difficult to keep up with the fluid loss and avoid dehydration. Treating the diarrhea will be important in managing SBS.

  • Liver disease: Liver problems can result from receiving parenteral nutrition. People with SBS are at risk of intestinal failure-associated liver disease (IFALD). This can be life-threatening, so it’s important to try to prevent liver disease and manage it if it does occur.

  • Gallstones (cholelithiasis): People with SBS are at risk of developing gallstones. In some cases, gallbladder removal might be considered to treat or avoid this complication.

  • Oxalate nephropathy: People with SBS may also be at risk for this type of kidney disease, which reduces kidney function. The treatment may mean taking in more fluids and avoiding foods with oxalates, such as leafy green vegetables and legumes.

  • D-lactic acidosis: This is a rare condition that can happen when carbohydrates aren’t being absorbed and are fermenting in the gut. It can cause confusion, slurred speech, and seizures.

  • Catheter-related bloodstream infection (CRBSI): Certain types of IVs for parenteral nutrition carry a risk of infections.

  • Metabolic bone disease: Osteoporosis is a common problem in SBS. Supplementing with vitamin D and K may be recommended for some people.

  • Iron deficiency anemia: Anemia is also common in SBS. For those receiving parenteral nutrition, it’s important for iron levels to be monitored.

  • Manganese toxicity: Balancing the level of manganese that should be present in parenteral nutrition is difficult. It is a trace element and is needed by the body, but it is important that too much isn’t taken in with parenteral nutrition.

What Is the Outlook for Short Bowel Syndrome?

Unfortunately, there is no cure for SBS. However, the management of SBS has improved in recent years. Various treatments can help people live better lives while managing the condition. Many people with SBS don’t need parenteral nutrition, or they only need it for about a year. For those with a shorter intestine, parenteral nutrition might be needed for the long term. The outlook for SBS is going to be different based on several factors. For that reason, it’s difficult to broadly predict outcomes. People with SBS should work with their healthcare providers to understand the potential for complications and their prognosis.

SBS is a complex condition. It may occur after surgery or treatment for cancer. SBS may be temporary, meaning that it could be a problem that lasts for a number of months or even years. The body may adapt over time, and treatment might no longer be needed. In some cases, SBS may turn into a chronic condition that needs management. Treating SBS includes managing nutrition with the help of the healthcare team and optimally, a dietitian. SBS may lead to other health problems, so some treatments may be used to try to prevent complications such as liver disease. A team of healthcare providers will be needed to manage all the aspects of SBS. The prognosis for SBS is mixed and will depend on the severity of the disease and overall health.


Adapted from: VWH

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