Short bowel syndrome

Short bowel syndrome is a condition in which the small intestine cannot take in enough nutrients from foods because it's shorter than a typical small intestine or because its ability to absorb nutrients is decreased.

One role of the small intestine, also called the small bowel, is to absorb nutrients and fluids from food. The nutrients then circulate through the bloodstream. A short bowel may not be able to absorb enough nutrients for the body's needs.

Short bowel syndrome can happen when:

• A part of the small intestine is removed during surgery to treat another condition.
• The small intestine is shorter than typical at birth or has some other nontypical form.

Treatment of short bowel syndrome usually involves getting nutrition through a tube placed in a vein or through a feeding tube to the stomach. The condition also may be managed with a special diet and nutritional supplements. In some cases, surgery is needed.

Short bowel syndrome also is called short gut syndrome.

Common signs and symptoms of short bowel syndrome may include:

• Diarrhea.
• Greasy, foul-smelling stools.
• Extreme tiredness.
• Weight loss.
• Not enough nutrition from foods, also called malnutrition.
• Slower growth and development than expected in infants and children.

Short bowel syndrome also may cause low fluid levels, called dehydration. Symptoms of dehydration include:

• Dark-colored urine.
• Extreme thirst or dry mouth.
• Tiredness, lightheadedness or fainting.
• Sunken eyes or cheeks.
• Dry diapers for three or more hours.
• Crying without tears in children.

Several conditions of the small intestine are treated by surgery to remove damaged or diseased tissues. These conditions include:

• Necrotizing enterocolitis, a condition affecting newborns that causes the inflammation and death of intestinal tissues.
• Volvulus, twisting of the small intestine around itself.
• Crohn's disease, a long-term condition of the intestines that damages tissues of the small intestine and affects how it works.
• Cancer of the small intestine or radiation treatment for cancer.
• Mesenteric ischemia, a condition that cuts off or limits the blood supply to the small intestine.
• Traumatic injury to the belly.

A shortened small intestine after surgery may not be able to absorb enough nutrients and fluids. The type and amount of nutrition loss depend on how much of the small intestine was removed and what section was removed.

Risk factors for short bowel syndrome include the following:

• Surgery to remove part of the small intestine to treat another medical condition increases the risk of short bowel syndrome.
• Premature birth and very low birth weight increase the risk of a small intestine that is not fully developed or has a condition that requires surgery to remove part of the bowel.

A lack of essential vitamins and minerals can cause many complications:

• Low amounts of oxygen-rich red blood cells.
• Bone diseases or weak, fragile bones.
• Delayed growth and development of children.
• Other conditions caused by vitamin deficiencies.

Long-term complications can include:

• Frequent diarrhea.
• Dehydration.
• Food allergies and intolerance in children.
• Overgrowth of bacteria in the small intestine.
• Liver disease.
• Gallstones.
• Kidney stones and poor kidney function.
• Ulcers of the stomach and the tube from the mouth to the stomach, called the esophagus.
• Malnutrition.
• Lack of expected growth and development in infants or children.
• Complications related to IV lines and feeding tubes used for nutrition.

Your healthcare professional will do a physical exam and ask questions about symptoms, diet and medical history. This includes a history of any surgery to remove part of the small intestine.

Several tests can help diagnose short bowel syndrome or rule out other causes of symptoms. These include:

• Blood tests to measure levels of vitamins and minerals.
• Blood tests to find signs of infection or irregular immune system activity.
• Stool tests to measure levels of nutrients in stool and find out how well nutrients are being absorbed.
• Imaging tests to see if blockages or other conditions are causing the symptoms.

Treatment options vary depending on what section of the small intestine was removed or is not functioning well. In general, the treatment goals are to make sure you receive the nutrition your body needs and to manage complications.

The hope is for the small intestine to adapt as much as possible and absorb the nutrition you need.

• Parenteral nutrition is a method of getting all the nutrients and fluids you need through a tube placed in a vein, called an IV line. This is usually needed at the beginning of treatment.
• Enteral nutrition is the use of a feeding tube. This tube may go through the nose or mouth and down the esophagus to the stomach. Other tubes may be surgically placed through the wall of the belly and into either the stomach or small intestine. This may be started while you're still getting some nutrients through an IV.
• Eating a carefully planned diet may begin as the small intestine adapts to absorbing nutrients. Eating may be introduced gradually while getting enteral nutrition to ensure that you get enough nutrients.

For adults, it takes about two years for the small intestine to adapt. In children, it takes longer.

How far someone progresses with treatment varies. Some people may need a feeding tube for all or some of their nutritional needs. Some people will be able to eat a carefully planned diet to make sure they get enough vitamins, minerals and fluids.

Medicines

Medicines to treat short bowel syndrome include the following:

• Antidiarrheals are medicines that can slow movement of food and waste through the intestines and treat diarrhea. These include loperamide (Imodium), which is available with or without a prescription, and diphenoxylate (Lomotil).
• Proton pump inhibitors (PPIs) reduce the production of acids in the stomach. Reducing stomach acids may improve small intestine function. These medicines are available with or without a prescription. PPIs you can buy without a prescription include lansoprazole (Prevacid 24 HR), omeprazole (Prilosec OTC) and esomeprazole (Nexium 24HR).
• H-2-receptor blockers also reduce acid production and are available with or without a prescription. H-2-receptor blockers you can buy without a prescription include cimetidine (Tagamet HB), famotidine (Pepcid AC) and nizatidine (Axid AR).
• Glucagon-like peptide 2 (GLP-2) is a growth hormone that may improve how well the small intestine absorbs nutrients. This treatment may help people move from getting nutrition from an IV line to using a feeding tube. GLP-2 is given with a shot.
• Nutritional support may be needed to make sure you get enough calories, vitamins, minerals and micronutrients. This treatment may be taken as supplemental pills. Other nutritional support may be given with shots or IVs or added to your tube feedings.

Surgery

Surgery may be necessary for people who depend on getting nutrition through an IV line. Procedures include:

• Intestinal lengthening. In this procedure, a segment of the small intestine is removed and divided in half lengthwise. Each half is then closed lengthwise to create two narrower tubes. These segments are then reattached to the rest of the intestine.
• Serial transverse enteroplasty procedure (STEP). This procedure remodels a segment of the small intestine to create a zigzag pattern. This slows the movement of food and allows the small intestine to absorb more nutrients.
• Small bowel transplantation. Surgery to transplant a small intestine from an organ donor usually is considered when a person is dependent on getting nutrients from an IV line and has serious complications of short bowel syndrome, such as liver disease.

If you or your child has had surgery to remove part of the small intestine, an ongoing part of care is watching for complications, including short bowel syndrome. Your healthcare team will likely include a specialist in digestive diseases, called a gastroenterologist; a surgical team; and a nutrition specialist.

For children who have symptoms of short bowel syndrome but have not had surgery, an appointment will likely start with your pediatrician or family healthcare professional.

The following tips can help you make the best use of the time with your healthcare team.

What you can do

Before any appointment with your team, make a list of:

• Symptoms, including any that seem unrelated to the reason for your appointment.
• Key personal information, including major stresses, recent life changes and family medical history.
• Detailed medical and surgical history, including details highlighting how much of the small intestine was removed.
• All medicines, vitamins or other supplements you or your child take, as well as the doses and reason for taking each one.

If possible, bring a friend or family member who can take notes during appointments. If you get a diagnosis of short bowel syndrome, ask if there are any brochures or websites that provide useful information.

What to expect from your doctor

Questions from your healthcare professional may include:

• When did symptoms begin?
• Do the symptoms come and go, or are they constant?
• Have you experienced unexpected weight loss?
• What foods do you typically eat?
• Have you been diagnosed with any conditions of the digestive tract?
• If so, what treatments have you had?
• What surgeries on your gut have you had?

Questions about your child may include:

• When was your child's most recent wellness visit?
• Is your child being breastfed or drinking formula?
• Is your child eating solid foods?
• How often does your baby have a wet diaper?
• Does your child cry without tears?
• Does your child seem unusually irritable?
• Has your child been diagnosed with any long-term disease?
• What bowel surgeries has your child had?