What Is Short Bowel Syndrome?
Your bowels are made up of two parts -- the large intestine, also called the colon, and the small intestine. Short bowel syndrome usually affects people who’ve had a lot of their small intestine removed. Without this part, your body can’t get enough nutrients and water from the food you eat. This causes bowel troubles, like diarrhea, which can be dangerous if you go without treatment.
If you learn you have short bowel syndrome, know that doctors can do a lot of things to ease your symptoms and make sure you get the right nutrition. People who have the disease can lead active lives.
Over time, your body may adjust to having a shorter small intestine, and you may be able to take fewer medicines. The key is to stick to your treatment plan and get the support you need.
Adults usually have about 20 feet of small intestine. Those with short bowel syndrome usually have at least half of their small intestine missing or removed.
There are a lot of reasons why this might happen. Some babies are born with bowel problems that damage parts of the intestine. Others are just born with shorter bowels. Most often, short bowel syndrome happens after surgery to remove a large part of the small intestine.
Doctors may remove the small intestine as part of a treatment for:
- Crohn’s disease, a lifelong inflammatory bowel disease that causes belly pain, diarrhea, and other digestive problems
- Damage from cancer treatment, like radiation therapy
- Bowel injury
The main symptom of short bowel syndrome is diarrhea that doesn't go away. You or your child may also have:
- Anemia (not enough red blood cells)
- Easy bruising
- Fatty liver
- Kidney stones
- Bone pain and osteoporosis (thinning and fragile bones)
- Trouble eating certain foods
Getting a Diagnosis
If you’re having any symptoms and you’ve had a lot of your small intestine removed, your doctor may already suspect short bowel syndrome. To be sure, he’ll do a physical exam and may run other tests, including:
- Blood tests
- Stool exam
- X-rays of your chest and belly
- Upper GI series, also called a barium X-ray. You’ll drink a special liquid that coats your throat, stomach, and small intestine to make them stand out on the X-ray image.
- CT scan, a powerful X-ray that makes detailed pictures inside your body
- Ultrasound, which uses sound waves to make images of your organs
- Bone density test
- Liver biopsy, when doctors remove a piece of tissue for testing. Most of the time, doctors make a small cut on your belly and use a hollow needle to get the cells they need. They use a CT scan or an ultrasound to see where to place the needle. The biopsy takes about 5 minutes, but you may need a few hours to recover.
Along with the tests, your doctor will probably also ask you questions about your symptoms, like:
- How are you feeling?
- When did your symptoms begin?
- Do you have any other medical conditions?
- How are your energy levels?
- Are you having any diarrhea?
- Do you have problems after you eat certain foods?
- What makes your symptoms better? What makes them worse?
Questions to Ask Your Doctor
- How serious is my short bowel syndrome?
- Will it ever go away?
- What can I do to feel better?
- What kinds of treatment do I need?
- How will we know if they work?
- What kinds of food should I eat?
If your child has short bowel syndrome, ask your doctor how you can make sure he’s getting the nutrition he needs to grow.
Treatment has two goals: to ease symptoms and give you enough vitamins and minerals. The kind of treatment you get depends on how severe your condition is.
- For mild cases, you may need to have several small meals a day, along with extra fluids, vitamins, and minerals. Your doctor will probably also give you medicine for diarrhea.
- Treatment is the same for moderate cases, but from time to time, you may need extra fluids and minerals through an IV.
- For more serious cases, you may get an IV feeding tube instead of eating meals. Or, you may have a tube placed directly into your stomach or small intestine. If your condition improves enough, you can stop the tube feedings.
- In the most severe cases, people need IV feeding tubes all the time.
Your doctor may suggest surgery, including a transplant of part or all of your small intestine. A new organ can cure small bowel syndrome, but a transplant is major surgery.Doctors usually recommend it only when other treatments haven’t worked.
If you choose this option, your doctor will put you on a waiting list for a small intestine from a donor. After your transplant, you could be in the hospital for 6 weeks or longer. You'll need to take drugs that prevent your body from rejecting your new organ. You’ll need the medicine and regular check-ups for the rest of your life.
Depending on your condition, there are other treatments that may help your small intestine absorb more nutrients and water. They include:
- Teduglutide (Gattex). Doctors may prescribe this hormone for adults with more serious cases of short bowel syndrome who need IV feeding tubes.
- L-glutamine, a powder that you can mix with water and drink. It may help your small intestine absorb more nutrients, some studies have shown.
It’s very important to make sure children with short bowel syndrome get enough calories and nutrients, since they are still growing. Talk to a doctor or a dietitian about what kinds of food are best. Your child’s doctor will check him regularly to make sure he’s getting what he needs.
Some people may need treatment for only a short time. They get what doctors call intestinal adaptation, when the small intestine is able to adjust to its shorter length and work as it should. It can take up to 2 years for that to happen, and most people still need treatment before their organ gets used to things.
Scientists are looking for new treatments for short bowel syndrome in clinical trials. These trials test new drugs to see if they're safe and if they work. They often are a way for people to try new medicine that isn't available to everyone. Your doctor can tell you if one of these trials might be a good fit for you.
Taking Care of Yourself
It’s hard to deal with symptoms like diarrhea, but short bowel syndrome doesn’t have to take over your life. It's important that you keep in touch with your doctor and follow your treatment plan so you can keep things in control.
You can also take steps to feel better, like:
- Know what to eat. There’s no single diet plan for people with short bowel syndrome, but in general, you should make sure to eat lean protein (meat, dairy products, eggs, tofu) and carbs that are low in fiber (white rice, pasta, white bread). Avoid sweets and fat. A dietitian can help you figure out what foods are best.
- Stay active. Exercise is good for your body and mind. Your doctor can tell you how much and what kinds of activity are right for you. If you’re using an IV for treatment, ask for one that you can carry with you.
- Ask for help. Family, friends, and members of your community can help you run errands, get rides to the doctor, or just let you vent about the stresses of treatment. It may help to talk to a psychologist or counselor, too.
- Learn from others. Support groups can be a great way to get advice and understanding from other people living with short bowel syndrome. Find a group that meets in your area, or explore online discussion boards.
What to Expect
By working closely with your doctor, you can keep your symptoms under control and lead an active life. Short bowel syndrome can be very serious if you don't follow your treatment plan. You can become dehydrated, and there's a chance your body won't get enough nutrients.
For some people, the condition gets better, and they don’t need a lot of treatment after a while. Whether your short bowel syndrome goes away depends on your age, how healthy you are, how much of your small and large intestines remain, and whether you have another condition like Crohn’s disease.
For more information on Short Bowel Syndrome, visit the web site of The Short Bowel Syndrome Foundation. You can find out about support groups there, too.