In this section
Inflammatory bowel disease (IBD) is a condition that causes inflammation (swelling) in the bowel (intestine). IBD is the general term used to describe two different conditions:
Inflammatory bowel disease is sometimes confused with irritable bowel syndrome (IBS) because some of the symptoms overlap. However, they are not the same disease, and they are treated very differently.
IBD is a chronic (long-lasting) condition that currently has no cure. With effective treatment, many children with IBD can remain free of symptoms for long periods of time.
IBD causes layers of the bowel wall to become inflamed and ulcerated. The symptoms and the effect they have on your child will depend on how much of the bowel is inflamed. If your child has IBD, they may have:
If your child has Crohn disease, they may also have:
Over time, the symptoms of IBD can get worse (called a flare-up) or they can go away (called remission).
If your child has any of the above symptoms or is losing weight without explanation, they should be seen by a GP. Your child may be referred to a paediatrician or paediatric gastroenterologist (paediatric bowel specialist). They may need some tests, such as blood and stool (poo) tests, or
an endoscopy (where a special camera is used to inspect the bowel) – this may be a colonoscopy or gastroscopy or both.
Treatment for IBD depends on the location and severity of the disease, and whether your child has Crohn disease or ulcerative colitis. While treatment can help control the disease, there is currently no cure. Treatment aims to control the inflammation, relieve symptoms, correct any
nutritional problems and optimise growth and puberty.
Treatment for IBD may include medicines to:
It is important to talk to your doctor about your child's medicines. You should know the names and doses of the medicines, the side effects and why your child is taking them.
Sometimes Crohn disease or ulcerative colitis causes problems that can't be fixed with medications, and surgery may be needed. Your child's doctor will talk to you about this, if necessary.
Your friends and family may suggest trying alternative medications or treatment. Please discuss these with your doctor first, as some therapies can be harmful or may interact with your child's current medications.
Exclusive enteral nutrition (EEN) is a treatment for Crohn disease that involves drinking a formula for a specific period, instead of drinking and eating usual food. EEN uses a specifically balanced formula that will meet all of your child’s daily nutritional needs. Using EEN will enable
the bowel to heal and return to its healthy normal state, and should help your child regain weight they have lost because of their condition. It is common for your child to be given EEN when they are first diagnosed with Crohn disease. They may also be given EEN if they have a relapse.
The best diet for someone with IBD is a normal, balanced diet. This means that you can eat anything from any of the food groups. No particular food has been shown to cause Crohn disease or ulcerative colitis, although some people may find that certain foods can make their symptoms worse.
If your child is feeling unwell and can't manage to eat enough, a dietitian can provide individual advice to help.
Children with IBD need to have regular check-ups. It is important to attend these appointments, and get any blood tests requested by your doctor.
Contact your GP, paediatrician or gastroenterologist if:
The cause of IBD is not yet understood; however, research is getting closer to finding a cause and cure. It is strongly believed that diet does not cause IBD. Children who have a family member with IBD have a greater chance of developing the condition themselves.
IBD is not contagious (can't be caught by anyone else).
In some young people, IBD is mild and easily controlled; in others, control may be more difficult. The effect of the illness on your child may be considerable, and they may be particularly embarrassed by a problem with the bowels.
The most difficult problem that your child may have to deal with is the need to go to the toilet urgently and with little warning. The fear of this happening and being unable to get to the toilet in time may be a cause of considerable anxiety, especially for children at school. See our fact sheet
Inflammatory bowel disease (IBD) – information for schools.
In addition, the cortisone medication can cause side effects (e.g. weight gain, an increase in pimples, mood swings, difficulties concentrating and headaches), which may be distressing for your child. Talk to your doctor about this.
Will my child be able to lead a normal life with IBD?
Yes – with effective treatment, it is possible to manage your child's symptoms and prevent flare-ups, though it may take some time to determine the best treatment for your child. While IBD is life-long, researchers are working towards a cure and ever better ways to manage the
symptoms. It may be helpful to read and show your child's school our fact sheet. Unfortunately, some people require intensive treatment, sometimes involving the removal of affected parts of the bowel, which can impact on their day-to-day activities.
Are my other children likely to develop inflammatory bowel
They are not necessarily likely to develop inflammatory bowel disease, but there is a greater chance that children with a family member who has inflammatory bowel disease will develop the disease, compared to children with no affected family members.
Can a low FODMAP diet help with my child's IBD?
A low FODMAP diet (a diet that avoids certain sugars) is not used to treat IBD. No food in particular has been proven to cause Crohn disease or ulcerative colitis. A low FODMAP diet has been shown to be useful in treating IBS (irritable bowel syndrome); however, IBS is not the
same as IBD (inflammatory bowel disease), and the treatments are very different. Some children with IBD may also have IBS. It is important to have a discussion with your doctor before making any significant changes to your child's diet.
Developed by The Royal Children's Hospital Gastroenterology and Dietetics departments. We acknowledge the input of RCH consumers and carers.
Reviewed July 2018.
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This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.