Crohn's disease - Kids & Teens
What is IBD?
When your doctor first told you about Crohn's disease, he or she may
have also mentioned 'Inflammatory bowel disease', or IBD. The word 'IBD'
is used for a group of diseases that cause pain and swelling
(inflammation) in the
digestive system. Crohn's disease can affect any part of the
digestive tract, for example the mouth, stomach, large intestine or
small intestine. Another type of IBD called ulcerative colitis only
affects the inner lining of the large intestine (colon and rectum).
Having IBD can be difficult sometimes, but with help from your doctor
and by making a few changes in your life you should be able to carry on
Here are some answers to questions people often ask about IBD. However,
because Crohn's disease affects different people in different ways, you
should not worry if you find your situation is slightly different than
someone else's. We suggest you and your parents read this together so
you can talk about it with them.
How does IBD make you feel?
The most common IBD symptoms are abdominal pain, cramping, tiredness
(fatigue), runny stool (diarrhoea) and weight loss. Other symptoms may
include bloody diarrhoea, fever, anaemia (low levels of red blood cells
in the blood which can make you feel tired, faint or breathless),
exhaustion (extreme tiredness) and (in children) slowed growth.
Both Crohn's disease and ulcerative colitis are ongoing (chronic)
diseases, with times when symptoms get worse (called flares, flare-ups,
or attacks) and other times when symptoms get better (remission).
Although the symptoms can make you feel unwell and may make your daily
activities difficult, they can usually be managed with a combination of
care, medication, hospitalisation and (sometimes also) surgery. Many
people find that in well managed IBD, making some simple changes to
their everyday lives enables them to continue their normal activities.
IBD can start at any age. Both Crohn's disease and ulcerative colitis
are found worldwide, although they are more common in the Western world.
About 2.2 million people in Europe have IBD. Regional differences range
from 1/1000 to 1/500, with the highest numbers in northern Europe.
IBD affects boys and girls equally, although ulcerative colitis is
slightly more common in boys and Crohn's disease is slightly more common
Although the exact causes of IBD are unknown, they are believed to be
related to changes in the body (immune system) brought about by an
environmental trigger in people who are genetically prone to the
disease. A combination of factors may play a role, including bacteria,
viruses, genetics, smoking and over-the-counter pain medicines. Other
factors, such as stress and diet, are not believed to cause IBD,
although they may be involved in worsening symptoms for some people.
Neither Crohn's disease nor ulcerative colitis is contagious, meaning
you cannot catch it from someone else or spread it to anyone if you have
it. This should not be confused with the fact that the tendency to
develop the disease may be hereditary (passed on through the genes),
since relatives of people with IBD are at a slightly greater risk of
developing the disease. However, other factors (such as environmental
triggers) are also believed to play a role in developing the disease for
Both Crohn's disease and ulcerative colitis can cause other problems, or
complications. With Crohn's disease, for example, scarring and
thickening of the intestine walls can create a narrowing of the
intestine wall, which is called a stricture, leading to constipation,
bloating and pain. Nutritional problems can happen if the body is unable
to absorb proteins, vitamins or minerals. Crohn's disease may also keep
the body from using calcium and vitamin D, which can lead to
osteoporosis (bone density loss).
With ulcerative colitis, bleeding may cause anaemia (low levels of red
blood cells in the blood, which can make you feel tired, faint or
Although not everyone will have these problems, if they arise, they may
also need medical care in addition to treating Crohn's disease or
In severe Crohn's disease the intestine walls
may become fully blocked (called an obstruction), which can cause severe
pain and vomiting that must be treated in the hospital. Another possible
problem is a fistula, or tunnel caused by inflammation that goes from
one part of the intestine to another or to the skin (for example, from
the bowel to the skin near the anus). Sudden, severe dilation of the
colon (referred to as toxic megacolon) may result in a perforation.
Not everyone will have these problems, but for some people IBD may also
affect other parts of the body, such as the joints, eyes, mouth, liver,
gallbladder, skin or kidneys. Although some of these problems may
improve with the treatment and management of IBD, specific treatment may
also be needed.
Crohn's disease may cause joint pain or arthritis, inflammation of the
eyes and mouth, liver diseases, gallstones, skin rashes, anaemia (low
red blood cell count) or kidney stones.
Treatment with medicine is usually the first approach to managing IBD.
The type of treatment you will be given depends on several things - such
as whether you have ulcerative colitis or Crohn's disease, the extent of
the disease, and the impact of your symptoms on your daily life.
For people with Crohn's disease, drugs that suppress the immune system (azathioprine,
6-mercaptopurine or methotrexate) are often used to help control the
inflammation and as maintenance therapy to keep symptoms from coming
back. Active Crohn's disease is usually treated with steroid tablets (eg,
prednisolone) and sometimes antibiotics are also used. When other drug
therapy does not work well, an anti-TNF drug may be given by infusion
(drip) in the hospital or by injection at home.
For people with ulcerative colitis, similar treatment options are
available. The lower part of the bowel may be treated with drugs given
directly into the rectum with an enema or suppository. A medicine called
mesalazine may be given by mouth.
With both diseases, surgery may be needed if medication does not work
well or if there are other problems also. If you are worried about the
possibility of needing surgery, speak with your doctor about your
In severe disease, such problems can be a
blockage or leak in the bowel. In severe ulcerative colitis, some people
have their large intestine removed. Because ulcerative colitis can only
affect the large intestine, their disease is considered 'cured';.
However, with severe Crohn's disease, surgery is not considered to be a
cure because the disease can return in another part of the digestive
system later on.
Together, you and your doctor will develop a treatment plan that
reflects your disease severity, past treatments, and any special needs
and goals you may have. For more details on treatment options for
Crohn's disease and ulcerative colitis, please see
Treatment plan for CD.
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Do you have any other questions about IBD that you are still wondering
about? Was there anything on this page that you didn't understand? Write
these things down so you can bring them with you when you visit the
doctor. Also ask your mum or dad if they have any questions they would
like to ask too.
For parent information