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Understanding Pediatric Chronic Illnesses
How families can manage infl ammatory bowel diseases
For a parent of a child diagnosed with
a chronic illness, the future can be scary
and overwhelming. Assembling a medical
team and beginning to formulate a
treatment plan, even becoming familiar
with a glossary of new terminology, can
Resources are available to help families
make sense of many diseases and ailments,
and some of these organizations
even off er tools specifi cally designed to
help support the care of a child patient.
For example, the Crohn’s & Colitis
Foundation is a leading resource for families
navigating infl ammatory bowel diseases
like Crohn’s disease and ulcerative
What is IBD?
Crohn’s disease and ulcerative colitis are
the two most common types of infl ammatory
bowel diseases (IBD). Th ese chronic
conditions produce similar symptoms,
use similar therapies, and are both treatable.
However, they are not the same.
Crohn’s disease may occur in any part
of the large intestine (also called the
colon). In fact, it can happen anywhere
in the entire digestive system. However, it
most commonly develops right where the
small and large intestine meet. In ulcerative
colitis, only the colon and rectum
are aff ected.
No one knows for sure what causes
Crohn’s disease or ulcerative colitis, but
experts believe several factors may lead to
the development of the diseases, including
genes, environmental elements like
viruses and bacteria, and inappropriate
What are the symptoms?
Despite the diff erences between Crohn’s
disease and ulcerative colitis, both can
produce similar symptoms when active,
all brought on by chronic infl ammation.
Symptoms may include diarrhea, rectal
bleeding, urgent need to move bowels,
abdominal cramps and pain, sensation of
incomplete evacuation, and constipation.
“It is critical that if you suspect your
child has infl ammatory bowel disease,
you seek care with a qualifi ed pediatric
gastroenterologist who can carefully and
effi ciently help determine the diagnosis
and begin a treatment plan to help your
child feel better, thrive, and maximize
quality of life,” said Andrew Grossman,
MD, pediatric gastroenterologist and
chair of the pediatric aff airs committee of
the Crohn’s & Colitis Foundation.
How does it aff ect children?
When IBD is diagnosed in childhood,
it may be more extensive and follow a
more severe course than when it is diagnosed
in adulthood. While symptoms are
similar in adults and children, some children
with IBD experience delayed puberty
and some fail to grow at a normal rate.
Dealing with disease relapses, frequent
doctor visits, hospitalizations, treatments,
and even surgery, many children with
IBD miss signifi cant school time and
Th ey are oft en overwhelmed by the
emotional and psychological side eff ects
of the disease.
Learning how to manage the disease is
not always easy for children. Parents play
an important role in educating their children
about IBD, including teaching them
they need to take their health seriously
and take responsibility for caring for
How can IBD be managed?
It is possible to live a full, rewarding,
happy, and productive life with IBD.
Treatment begins with fi nding a pediatric
gastroenterologist you trust. Your child’s
IBD treatment may ultimately involve a
wide range of therapies including medication,
nutritional adjustments, and surgery.
Maintaining your child’s health may
also involve lifestyle accommodations,
like organizing your schedule for ample
bathroom breaks when away from home.
You may also need to work closely with
your child’s school to manage absences
and academic performance along with
any medical care that needs to take place
during school hours.
Many families also fi nd value in building
a network of supportive friends and
loved ones. One example, the Crohn’s
& Colitis Foundation off ers Camp Oasis
- a co-ed residential camp program that
allows children to meet others like them
in a safe and enriching environment.
Another resource is justlikemeibd.org,
a website featuring stories and videos
from teens with IBD as well as information
on school, dating, managing stress
and diet, research updates, and resources
Photos courtesy of Getty Imagesм
Is your child ready to manage
his or her own care?
For young adults, managing IBD may
be particularly challenging, and this stage
may be further complicated by the transfer
of care from a pediatric health care
team to an adult health care team. If you
have a child taking the next steps into
adult care, consider sharing these tips
from the Crohn’s & Colitis Foundation
and visit crohnscolitisfoundation.org/
campus-connection to help your young
adult become independent in his or her
• Understand your disease and how it
aff ects you personally, including your
typical symptoms and signs of a fl are.
Also, be sure you understand when and
how to contact your health care team.
• Know your medications and how much
you take. Th is is especially important
when you see other doctors so they can
help you avoid medicines that don’t
work well with your IBD medications.
• While a parent is still involved, practice
becoming your own advocate with
your doctor and others, such as school
administrators. Ask questions and take
an active role in your treatment.
• When your doctor orders tests or procedures,
be sure you understand any
preparations that are required, and be
sure to follow up so you understand the
results and any changes necessary to
• If you move, enroll in a new insurance
plan, or travel, know what medical services
will be accessible and covered so
you can make the best decisions about
Courtesy Family Features