Short Bowel Syndrome in Children
Overview
Short bowel syndrome is when the
body has trouble absorbing nutrients from food because of a problem with the small
intestine. It often happens to children who have had a large part of their small
intestine removed. This complex condition can be life-threatening in some babies and
children.
The small intestine is a long, curving organ. It connects your stomach to your large
intestine. Digestion starts in your stomach. But most digestion takes place in the
small intestine. The small intestine also absorbs nutrients. Bowel refers to the small
intestine and large intestine together.
Your child can have problems when
half or more of the small intestine is taken out. Your child may not be able to absorb
enough water, vitamins, and other nutrients. This can cause major nutritional problems
and symptoms.
It can also raise your child's risk
for short bowel syndrome. The more of the small intestine that’s removed, the greater
your child’s chance for severe problems.
Different parts of the small
intestine absorb different nutrients. If your child has a latter part of the small
intestine taken out, your child can have nutritional problems. This is because the
first
part of the small intestine cannot absorb all nutrients. Having the valve between
the
small and large intestine also makes a big difference in your child’s health. Some
children with short bowel syndrome have also had part of their large intestine taken
out. This leads to more problems.
Having short bowel syndrome from birth is very uncommon. The underlying cause of short
bowel syndrome is often different between newborns and adults.
Causes
A problem your child is born with (congenital) can keep the small intestine from forming
properly. This can cause short bowel syndrome in newborns.
Short bowel syndrome in infants can be caused by conditions that require part of the
small intestine to be removed. Issues that permanently harm the small intestine can
also cause symptoms of short bowel syndrome.
Some of the causes of this condition in infants can include:
- Dead cells in the intestines (necrotizing enterocolitis)
- Blockage in a part of the small intestine called the ileus (meconium ileus). It happens
when the first solid stools passed by a newborn are thicker and stickier than normal.
- Abdominal wall defects
- Twisting of the intestines (volvulus)
- Intestinal problems that are present at birth (congenital)
- Severe problems with absorbing nutrients
- Problems with digested food moving through the intestines
Later in childhood, there are other common causes of short bowel syndrome. These can
include inflammation of the lining of the digestive tract (Crohn’s disease) and intestinal
trauma.
Risk Factors
Your child is at greater risk for
short bowel syndrome if your child has certain health issues. These include necrotizing
enterocolitis.
Symptoms
Symptoms of short bowel syndrome in children include:
- Diarrhea
- Dehydration
- Poor weight gain
- Recurrent vomiting
- Cramping
- Heartburn
- Fatigue
- Food sensitivities
Symptoms vary, depending on which part and how much of the intestine was removed.
Diagnosis
If your child has had a large part
of their small intestine removed, your child's healthcare provider will look for short
bowel syndrome. If your child has a history of surgery and symptoms of short bowel
syndrome, your child is likely to have the condition. Diagnosing small bowel syndrome
may be trickier if your child is born with the condition.
Your child’s healthcare provider
may rule out other causes of your child's symptoms. The provider will do an exam and
ask
about your child’s symptoms. Your child may also need other tests. These can
include:
- Basic blood tests to check for
infection, anemia, and electrolytes
- Tests to check for nutritional deficiencies
- Stool tests to see if your child is
absorbing enough fat
- X-ray, CT scan, or ultrasound of your
child’s abdomen to look for complications
- Endoscopy to look at your child’s
esophagus, stomach, and early duodenum
- Colonoscopy to look at your child’s
colon
Treatment
Treatment depends on how severe the
condition is. It also depends on how long it’s been since your child had surgery to
remove the small intestine.
After surgery, your child’s
remaining intestine slowly adapts. Over time, it is able to absorb nutrients better.
This process can take 1 or 2 years. This varies depending on how much and what part
of
your child’s small intestine was taken out.
Your child will likely have
feedings through an IV (parenteral) after surgery. This means that your child won’t
eat
anything right away. Instead, your child will get nutrients through a tube placed
in the
vein.
As your child recovers, your
child's healthcare provider may slowly start enteral feedings. This gives liquid
nutrition directly to your child’s stomach or small intestine through a feeding tube.
Over time, your child’s healthcare provider will try to increase the enteral feedings
and decrease the parenteral feedings. If your child is a baby, breastmilk may be given
in the enteral feeding.
Your child may eventually be able
to have oral feedings. Your child will need to eat small meals often. Foods that are
high in sugars, fats, protein, and fiber should be avoided. Your child may need more
calories than other children because of the loss of part of the intestine.
Some people with severe short bowel
syndrome will need long-term parenteral nutrition. This can sometimes cause problems.
If
this happens, your child may need a small intestine transplantation. Or your child’s
healthcare provider may suggest a non-transplantation surgery. This can improve how
your
child absorbs nutrients.
Other treatments for short bowel syndrome include:
- Special diet
- H2 blockers or proton pump inhibitors (PPIs). These are medicines to decrease stomach
secretions.
- Medicines to treat diarrhea
- Extra nutritional supplements such as fiber or fat
- Electrolyte solutions. Your child may take these by mouth (orally) or through an IV
(intravenous line).
- Medicines to prevent liver damage. These are given to children on parenteral nutrition.
- Medicines to help the small intestine adapt
Complications
This condition can cause serious
issues. Your child’s healthcare provider will watch for complications and try to treat
any problems early on. Complications depend on which part and how much of the intestine
was removed.
If problems aren’t treated well, your child can have diarrhea. This can cause dehydration,
weight loss, and malnutrition. It may even lead to death.
Other complications can include:
- Liver disease. This can happen from
long-term use of parenteral nutrition. In rare cases, your child may need a liver
transplant.
- Your child may need to have their
gallbladder removed.
- Bacterial overgrowth of the small
intestine. This can make your child’s symptoms of short bowel syndrome worse.
- Nutrient deficiencies. Specific
problems depend on which nutrients are low. For instance, some children show early
bone loss. This is because of poor absorption of calcium and other nutrients.
- Kidney stones. This is caused by extra
oxalate in your child’s urine.
- Infections. Catheters used for feeding can become infected.
- Peptic ulcer. These are sores in the lining of the stomach or
small intestine from too much stomach acid.
Follow your child’s healthcare provider’s orders about diet and medicines. Doing so
will reduce your child’s risk for problems.
When to Call a Healthcare Provider
Call your child’s healthcare
provider if your child has severe diarrhea or vomiting. Your child may need to go
to the
hospital to get IV fluids to rehydrate. You should also call the healthcare provider
if
your child has any new symptoms.
Your child’s care may be complex.
It may feel overwhelming. It’s important to talk with your healthcare providers if
you
are not able to cope with the stress of caregiving. They will help you find support
and
other resources.
Key Points
- Short bowel syndrome is when the body
has trouble absorbing nutrients from food because of a problem with the small
intestine. It often happens to children who have had a large part of their small
intestine removed.
- The main symptoms of short bowel syndrome in children include diarrhea and failure
to gain weight.
- After surgery, your child will likely get nutrients through a vein. This is called
parenteral nutrition. Then your child will likely get liquid nutrition directly to
the stomach or small intestine through a feeding tube. Eventually, your child may
be able to eat normally.
- Short bowel syndrome can cause problems. These are more likely in children who need
long-term parenteral nutrition. Your child may need a small intestine transplant.
- Your child’s care may seem overwhelming. You should talk to your healthcare providers
if you are not able to cope with the stress of caregiving.
Next Steps
Tips to help you get the most from a visit to your child’s healthcare provider:
- Know the reason for the visit and what you want to happen.
- Before your visit, write down questions you want answered.
- At the visit, write down the name of a
new diagnosis and any new medicines, treatments, or tests. Also write down any new
instructions your provider gives you for your child.
- Know why a new medicine or treatment
is prescribed and how it will help your child. Also know what the side effects
are..
- Ask if your child’s condition can be treated in other ways.
- Know why a test or procedure is recommended and what the results could mean.
- Know what to expect if your child does not take the medicine or have the test or procedure.
- If your child has a follow-up appointment, write down the date, time, and purpose
for that visit.
- Know how you can contact your child’s provider after office hours. This is important
if your child becomes ill and you have questions or need advice.