Short bowel syndrome (SBS) is an extremely rare disease in which your body can’t absorb enough nutrients from food because part of your small intestine is missing or damaged. The small intestine is the part of your digestive tract that absorbs most of the nutrients you get from food. When part of it is missing or doesn’t work properly, your body can’t get the nutrients it needs from food.
What Are the Types of Short Bowel Syndrome?
Doctors might classify the type of short bowel syndrome you have in a couple of different ways.
They may classify it based on how much your small intestine has been removed or damaged. These are the types:
- Type 1 or end-jejunostomy/ileostomy: This is the most severe type, where most of the small bowel and colon have been removed and the surgeon has created a stoma, an opening in the abdominal wall for waste to exit into a bag worn on the outside of the body.
- Type 2 or jejuno-colonic anastomosis: The last part of the small intestine, called the ileum, has been removed and the end of the remaining intestine is connected to the colon.
- Type 3 or jejuno-ileal/ileocolonic anastomosis: This is the least severe form of SBS because less of the bowel has been lost, so it may absorb fluid and nutrients better.
Doctors might also classify your SBS based on how long it is expected to last. These are the types:
- Type I acute: This is a short-term problem that may happen after surgery to remove part of the small intestine, but it will resolve.
- Type II prolonged acute: This longer-term SBS may last several weeks or several months.
- Type II chronic: This type of SBS could last months, years, or a lifetime.
What Are the Causes of Short Bowel Syndrome?
Most of the time, short bowel syndrome is a side effect of surgery to remove a part of your intestines because of another health problem.
It’s possible, however, for a baby to be born with it. This is due to a birth defect in which the small intestine didn’t grow properly when the fetus was in the womb. As a result, the small intestine may be too short, not fully formed, or missing a section. The birth defect may be caused by mutations in certain genes.
Babies might also be born with conditions that require surgery to remove part of the intestine, called a bowel resection, leading to SBS. The most common of these conditions is necrotizing enterocolitis, a serious condition that causes a baby’s intestinal tissue to become inflamed and die.
Children and adults may also have conditions that require bowel resection. The most common health problems that lead to small bowel surgery are:
Necrotizing enterocolitis. This is a serious, life-threatening condition that can happen to babies born early or underweight. It’s the most common reason a baby would need surgery to remove part of the small intestine. Severe inflammation of the intestine allows bacteria to get in and reduces blood flow to the intestine, which causes that tissue to die.
Gastroschisis. In this condition, the intestines grow outside the body while the baby is developing inside the womb.
Artesia of the small intestine. A birth defect in which several parts of the small intestine are too narrow to function.
Volvulus. In this condition, the intestine is twisted around itself. It can be a birth defect. Or it can happen later in life because of another health problem.
Crohn’s disease. An autoimmune condition in which your immune system attacks your digestive tract and severely damages a part of your intestine.
Intussusception. This is most common in babies. A piece of the intestine slides into itself, like a telescope, and blocks blood flow and the passage of food. It can happen to adults, too.
What Are the Symptoms of Short Bowel Syndrome?
The first and most common symptom of short bowel syndrome is diarrhea that doesn’t go away. In the early stages, you may have other gastrointestinal symptoms. As time goes on, you can become dehydrated and malnourished, which can lead to other symptoms, like unintentional weight loss.
Symptoms of SBS vary from person to person depending on the length of the remaining intestine, what was removed, how well it works, and how well it picks up the slack for the missing part.
Early signs of short bowel syndrome
The early signs of SBS include:
- Diarrhea or loose, watery stool
- Greasy, pale, especially bad-smelling stool
- Abdominal cramping, bloating, gas
- Heartburn
- Fatigue and weakness
- Unintentional weight loss or, in children, poor growth
- Swelling in the legs and feet
Serious symptoms of short bowel syndrome
Malnutrition and dehydration from SBS are serious. This means your body isn’t getting enough nutrients or water.
Untreated dehydration is a medical emergency that can lead to organ damage and shock. These are urgent signs of dehydration that can come from short bowel syndrome:
- Peeing less than usual (for babies, that means no wet diapers for three hours or more)
- Dark-colored urine
- Stiff, non-elastic skin (when you pinch and release it, it doesn’t snap back in place)
- Extreme thirst and dry mouth
- Feeling lightheaded, dizzy, or fainting
- Eyes or cheeks that look sunken
- For babies, no tears when crying
Malnutrition can cause:
- Swelling or bloating in your belly
- Muscle loss
- Dry, flaky skin
- Swollen feet and legs
- Hollow temples
- Poor growth in babies
A lack of electrolytes, vitamins, and minerals like magnesium, iron, and zinc each have their own set of symptoms beyond the general symptoms of malnutrition.
How Is Short Bowel Syndrome Diagnosed?
Your doctor will ask about symptoms and medical history, including any previous surgeries, as a significant part of the small intestine is often removed to cause short bowel syndrome. A physical exam will check for signs of malnutrition, dehydration, and other complications.
After an initial diagnosis based on medical history and physical examination, your doctors might need to run multiple tests to confirm a diagnosis of SBS. Here’s what you might expect.
Blood tests
Because SBS leads to malnutrition, your doctor may order blood tests (such as a blood chemistry test) to measure levels of vitamins, minerals, and other nutrients in your blood. Abnormal levels could point to SBS.
Stool tests
In SBS, your gut is unable to absorb fat the way it should. Your doctor might order a fecal fat test to see how much fat is in your stool. An abnormally high level could help confirm suspicion of SBS.
Typically, this test is done with a home test kit. You place plastic wrap over the toilet bowl to capture the stool. You may be asked to capture all your stool for 24 hours to three days. You’ll place it in the provided container and send it to the lab.
For babies in diapers, you’ll line the diaper with plastic wrap to collect the stool for a specific amount of time, place it in the container, and send it to the lab.
Your doctor might also order a stool culture to test for bacteria, parasites, or viruses in your intestines. A stool culture test can also identify microscopic amounts of blood, white blood cells, and evidence of food intolerances.
Imaging
Your doctor might need pictures of your small intestine. Here’s how those pictures might be taken:
X-ray. You’ll lie on a table under a machine that uses a small amount of radiation to take pictures of the inside of the body.
Upper GI series. You’ll swallow a chalky liquid that helps make abnormal things in your upper GI tract, including your small intestine, more visible on an X-ray.
Colonoscopy or sigmoidoscopy. After you take medication to make you fall asleep, your doctor will insert a long, flexible tube with a tiny video camera on the tip into your rectum to see inside your entire colon.
CT scan. You’ll lie on a table on a machine, and your midsection will be inside a large ring that will capture images of your gut through X-rays and computer technology.
MRI. You’ll lie very still inside a tube within a machine that uses radio waves and a large magnet to take pictures of the inside of your body.
CT or MRI enterography. You’ll swallow dye or get it through an IV so that the CT scan or MRI can better show any problems in your intestines.
Questions to Ask Your Doctor
If you’ve just been diagnosed with short bowel syndrome or think that you may have it as a result a recent surgery, here are some questions you might want to ask your doctor:
- Are there steps I can take to help myself (or my child) feel better?
- How do I know if I’m getting the nutrients I need?
- What kind of follow-up care will I need?
- What treatment do you recommend for SBS?
- Will I have any long-term consequences from SBS?
- How do I know if the remaining portion of my bowel is still working properly?
Finding Expert Care
Short bowel syndrome treatment requires a multidisciplinary team of professionals, which may include your primary care provider, such as a family doctor, general internist or pediatrician; a gastroenterologist, surgeons, nutrition experts, nurses, pharmacists, and behavioral health professionals.
There are a few ways to go about seeking care.
You may ask your primary care provider for a referral to a gastroenterologist with experience in SBS. Keep in mind, your provider might automatically refer you to specialists at a specific hospital regardless of the quality of SBS care that hospital provides. It might not be the best possible care in your area.
You might also look into hospitals and health systems that have an intestinal rehabilitation program (IRP), which is a multidisciplinary, team-based approach to SBS care. The Short Bowel Syndrome Foundation provides a list of some of the more well known programs on its website.
If you have access to one, you could make an appointment at one of the more than 40 National Centers of Excellence for Short Bowel Syndrome located in 22 states and Washington, D.C. You will also find a list of the centers on the SBS Foundation website.
If you have a choice between doctors, make appointments with them. After each appointment, ask yourself the following questions:
- Was I given the chance to ask my questions about SBS?
- Did the doctor genuinely listen to my questions?
- Were my questions and concerns addressed?
- Did the doctor use words and explanations that I could understand?
- Did the doctor show respect to me or my family member?
- Did the doctor ask relevant questions about my condition?
- Did the visit give me a sense of comfort?
- Did the doctor ask about my preferences regarding different SBS treatments?
- Did the doctor spend enough time with me?
- Did the interaction make me feel confident about the proposed treatment plan?
What Is the Treatment for Short Bowel Syndrome?
For many people with short bowel syndrome, the other healthy intestines adjust and reach full function. Until that time, the goal of treatment is to make sure you get the nutrition you need and avoid complications until your GI tract is fully working. Your individual treatment plan will depend on the severity of your condition, what part of your intestines is affected, and whether your colon is affected.
For mild cases of SBS, it might be enough to slowly increase how much you eat and drink while your intestines adjust. During this time, you may work with a dietitian to carefully plan what you eat and drink. You might take supplements to ensure you’re getting all the nutrients you need. You may also need diarrhea medicine.
For moderate to severe cases, you might need total parenteral nutrition. That means you’ll get all your nutrition from fluids given to you through an IV. Severe cases might also require a bowel transplant – a surgery in which your intestine is replaced by a healthy one from a donor.
Whenever possible, the goal will be to get you off of parenteral nutrition since long-term use of it raises the risk for serious complications. As you wean off of IV nutrition, you may move to enteral nutrition. That’s when you get food delivered directly to your intestine through a tube. You’ll gradually increase your eating and drinking, which stimulates your intestines and helps them adapt and begin to absorb nutrients as they should. You’ll work with a dietitian to make sure you eat and drink the right things.
When Treatment Doesn’t Work
If, once your gut has stopped adapting, it still can’t absorb enough nutrients to keep you healthy, you have what’s called chronic intestinal failure. In this case, you might need long-term IV nutrition or surgery.
Clinical trials for short bowel syndrome
If standard treatments don’t work, you might consider a clinical trial. In a clinical trial, you can get the latest experimental medication or procedures that aren’t yet available at all health care facilities. People often look into clinical trials when they have a condition that hasn’t responded to other available treatments.
Surgery
Some people need surgery to address certain aspects of short bowel syndrome.
You might need surgery to:
- Put a tube, called a catheter, into a vein so you can get IV nutrition and fluids
- Put a feeding tube in your stomach or small intestine to give you enteral nutrition
- Fix or remove other damage or problems in your intestines
- Make your intestine longer or change its structure so it can work better
- Get an intestinal transplant in serious cases when your intestines don’t return to proper function, you need long-term IV nutrition, and you develop serious complications
Other treatments
Medicine will play a role in your care, too. You might receive one or more of the following:
Teduglutide (Gattex). This medicine might improve the structure and function of your intestine as it adapts so that it can absorb nutrients and reduce your need for IV nutrition.
Apraglutide. This medication is a synthetic version of a human hormone called glucagon-like-peptide 2 that stimulates intestinal tissue growth and slows the movement of food through the gut, both of which improve the absorption of nutrients.
Somatropin (Genotropin, Humatrope, Norditropin, Nutropin, Serostim, Zorbtive). A lab-made form of human growth hormone, a substance given off by your pituitary gland, that can help your intestines absorb better.
You may also get prescription diarrhea medicine and antacids.
Home remedies for short bowel syndrome
Over-the-counter medicines for diarrhea, pain, and heartburn may be a part of your care. You might need dietary supplements for nutrition, too. But no matter what you take for your symptoms, it’s important that you clear it with your health care provider first.
Short bowel syndrome treatment timeline
Treatment for short bowel syndrome can take years. Here’s a look at what you might expect.
Acute stage. During the first three to four weeks of short bowel syndrome, you may get:
- Parenteral nutrition, where you receive the nutrients you need through an IV
- Enteral nutrition, where you receive liquid food through a tube implanted in your digestive tract
- Small amounts of food and drink that gradually increase as you're able to take them in
Adaptation stage. It may take your intestine several years or more to get used to its short length and get back up to full power. During this phase, you might get:
- Less IV nutrition as your intestinal function improves
- More enteral nutrition as your intestine gets better able to absorb it
- More real food and drink
Maintenance stage. At this point, your intestines have healed and improved as much as they are going to. You may need to make permanent lifestyle changes to make sure you can get all the nutrients you need to stay healthy.
What Are the Complications of Short Bowel Syndrome?
Short bowel syndrome can cause the following serious problems.
Diarrhea
Severe and ongoing diarrhea can cause malnutrition, extreme dehydration, and death.
Esophagitis
In SBS, your stomach can make too much acid, called gastric hypersecretion. Unchecked, this can lead to heartburn, ulcers and, in rare cases, inflammation of your esophagus (esophagitis). The inflammation can make it difficult and painful to swallow and difficult to eat, too. The condition may cause chest pain as well.
Fatty liver disease
As many as 50% of people with SBS can develop fatty liver disease, also called hepatic steatosis. This happens when too much fat builds up around the liver and messes with its proper function. They can also get intestinal failure-associated liver disease. The risk is highest for people who have to be on long-term IV nutrition, also known as parenteral nutrition.
Gallstones
SBS raises risk for gallstones, especially if you’re on long-term IV nutrition.
Kidney stones
These often form when your body doesn’t absorb fat properly, which is the case in SBS. Fat is left behind in your colon, where it combines with calcium bile salts and forms an acid that travels to the kidneys and forms calcium oxalate stones.
Nutrient deficiencies
Your body can’t absorb nutrients properly in short bowel syndrome. A lack of certain nutrients leads to other problems:
- Vitamin A: Damage to your eyes.
- Vitamin B12: A host of problems throughout the body, including in your immune, circulatory, and nervous systems.
- Vitamin D: Soft bones (rickets) in children. Thin, weak bones (osteopenia or osteoporosis) and fractures, muscle spasms, and nerve problems in adults.
- Vitamin E: Abnormal fluid collection and swelling in your legs and feet.
- Zinc: Hair loss, slow wound healing, and eczema-like skin inflammation.
Metabolic bone disease
This is another complication that’s more likely to happen in people who are on long-term IV nutrition. It’s caused by nutritional deficiencies. Metabolic bone disease refers to a group of diseases that weaken your bones. The most common ones are osteoporosis, osteopenia, and osteomalacia.
D-lactic acidosis
Also called D-lactic encephalopathy, D-lactic acidosis happens when undigested carbohydrates are left behind in your colon and join forces with bacteria in your colon to form d-lactic acid. When this acid builds up in your bloodstream, it can lead to vision problems, confusion, poor muscle control, and slurred speech.
Taking Care of Yourself
Once you’re eating and drinking regular foods and beverages, you’ll need to follow a special diet to make sure you get proper nutrition and prevent complications.
Short bowel syndrome diet
You may work with a dietitian to get your diet just right. Here are some rules of thumb for foods to add to your diet and others to avoid.
Make sure you get plenty of:
- Protein, such as eggs, tofu, fish, meat, dairy products, and smooth peanut butter and nut butters
- Refined carbohydrates, such as white bread, white rice, skinless white potatoes, and white pasta
Steer clear of:
- High-fat foods, such as deep fried foods
- Sugar and sweets
You might need to avoid:
- High-oxalate foods, which can cause kidney stones, such as caffeinated drinks, nuts, beans, soy, leafy greens, and many others
- High-fiber, complex carbohydrates, such as whole-grain bread, immediately after surgery
Managing short bowel syndrome
You’ll need to change not only what you eat but how you eat so you put less stress on your intestines:
- Eat whenever possible, and aim for four to six small meals a day
- Chew slowly and chew well
- Only drink a half cup of liquid with each meal
Depending how much your intestine eventually adapts, you may be able to go back to three larger meals per day, chewing a little faster, and drinking more liquid with meals.
If you have frequent diarrhea, your doctor might recommend an oral rehydration solution. This isn’t the same as a sports drink. Ask your doctor what to buy.
If you need to gain weight, the doctor or dietitian might suggest protein shakes that you can buy at the store. You might have heard of brands like Ensure and Muscle Milk.
You might also need a daily multivitamin or specific vitamin supplements. Ask your doctor what is best.
What to Expect With SBS
Short bowel syndrome can improve significantly over time or become a lifelong condition.
You should expect for the recovery process to take up to a few years. How much function you regain in your intestines depends on many factors, such as:
- How much healthy intestine you have
- Which part of your intestine was affected
- Whether your colon is still intact
- Your age
- Your overall health
Can short bowel syndrome be cured?
With treatment and time, some people with SBS get better. Their remaining intestine adapts and they’re once again able to absorb all the nutrients they need from regular food. Other people may never get back to a fully functioning digestive tract.
How Your Condition Might Change Over Time
Your short bowel syndrome may stabilize or get better over time. It could improve somewhat or your intestine could completely recover. If you are getting proper treatment, SBS itself doesn’t progress and get worse. But you can develop complications as a result of long-term use of total parenteral nutrition (TPN). They can include:
- Bacterial infections
- Various issues related to the IV catheter – the tube through which you receive TPN
- Insufficient uptake of calcium in your bones
- Blood clots
- Gallbladder disease
- Liver and kidney problems that can lead to failure of the organs
If the complications of ongoing TPN are so severe that you can’t continue with it, you may need a small bowel transplant.
Getting Support
Living with short bowel syndrome can be very challenging and take an emotional toll, especially for people whose gut never returns to full function. Learning from and sharing with others who have the same condition can help. You can find support groups and other educational resources at the Short Bowel Syndrome Foundation.
Ongoing treatment for SBS comes at a significant cost. The following organizations offer financial support to people with SBS to help offset the costs of health insurance, copays, and other out-of-pocket costs:
- The PAN (Patient Access Network) Foundation gives eligible people grants to help pay their insurance premiums and out-of-pocket prescription drug costs.
- NORD’s (National Organization for Rare Disorders) Short Bowel Syndrome Patient Assistance Program helps eligible people with SBS pay out-of-pocket costs directly related to their condition.
- United Healthcare Children’s Foundation offers medical grants for eligible children whose health care costs are not completely covered by health insurance.
Many other nonprofit organizations offer trustworthy resources and support for people living with SBS. They include:
- International Foundation for Gastrointestinal Disorders
- Oley Nutrition Support
- Short Bowel Syndrome Foundation
- United Ostomy Associations of America
Information for Caregivers
Short bowel syndrome may need lifelong or long-term care. Whether you’re the parent of a child with the condition or the caregiver to an adult with it, you can help them:
- Get to routine medical appointments for follow-up care and monitoring
- Stick to diet recommendations to get complete nutrition
- Keep up with medications, supplements, oral hydration, and nutrition shakes as needed
- Coordinate and manage nutrition intake, which may require learning how to manage IV lines and feeding tubes
Caregivers very often feel stressed and burned out. Many benefit from support groups. You might look to the following organizations for support groups:
- Family Caregiver Alliance
- Caregiver Action Network
- CaringInfo – A program of the National Alliance for Care at Home
Takeaways
- You can get short bowel syndrome from an operation for an intestinal problem or due to a birth defect.
- Recovery is possible, but it’s a long road that may take a few years.
- You should expect to need medication, IV nutrition, an implanted feeding tube, and a special diet.
Short Bowel Syndrome FAQs
What is the life expectancy for a person with short bowel syndrome?
There is no fixed life expectancy for people with SBS. It depends on numerous factors, including the severity of the condition and how long they need TPN. One study found that more than 82% of adults with SBS receiving at-home parenteral nutrition lived five years or more. For children, SBS no longer automatically means a shortened lifespan. Many infants and children with SBS do well and have a normal life expectancy.
What not to eat with short bowel syndrome?
Avoid complex carbohydrates, such as whole grain bread and brown rice; high-fat items, such as deep-fried foods; and sugary foods and drinks.
Which foods are good for short bowel syndrome?
You need protein-rich foods, such as meat, fish, eggs, and tofu; and simple carbohydrates, such as white rice, white bread, and skinless potatoes.
