Kids Health Info

Inflammatory bowel disease (IBD) – Crohn disease and ulcerative colitis

  • 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:

    • Crohn disease, which can affect any part of the digestive system
    • ulcerative colitis, which affects the lining of the large bowel only.

    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.

    Signs and symptoms of IBD

    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:

    • abdominal (tummy) pain
    • diarrhoea (loose, watery poo), which may contain blood or mucus
    • rectal bleeding (bleeding from the bottom).

    If your child has Crohn disease, they may also have:

    • fever
    • nausea and/or vomiting
    • loss of appetite, which can lead to weight loss
    • poor growth
    • joint pain.

    Over time, the symptoms of IBD can get worse (called a flare-up) or they can go away (called remission).

    When to see a doctor

    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

    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.

    Medication

    Treatment for IBD may include medicines to:

    • stop or control the inflammation (e.g. steroids, see our fact sheet Corticosteroid medicine)
    • stop the disease from getting worse, or keep your child free from symptoms (e.g. mesalazine)
    • prevent the immune system from attacking the body and causing the inflammation; some of these medicines may need to be given by injection or infusion in hospital
    • control pain (e.g. paracetamol)
    • provide the body with missing vitamins and minerals (e.g. multivitamins).

    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

    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.

    • Usually, EEN will be given for eight weeks (some children will continue to consume a small volume of EEN for longer). Your child’s dietitian will tell you how much of the formula you will need to give.
    • EEN comes in several flavours. It can either be taken orally or given by a nasogastric tube (a flexible tube passed through the nose and into stomach).
    • Your child should not have any other food or drink when they are taking EEN, apart from small amounts of chewing gum or barley sugar. They should also drink extra water.
    • While your child is taking EEN, the gastroenterologist may start other medicines to help keep the Crohn disease in remission.
    • EEN can be safely stored at room temperature, but it tastes better if it is consumed when cold. It can be frozen, so the servings are still cold when consumed at school. EEN can be consumed half frozen or completely frozen.
    • After eight weeks, normal food and drinks can be gradually restarted at the same time the amount of EEN is gradually decreased. It's recommended your child start with foods that are low in fat, fibre and lactose with the support of a paediatric dietician.

    Diet

    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.

    Follow-up

    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:

    • your child's symptoms are worse or not improving
    • your child is losing weight
    • the mediations prescribed by the doctor are making your child feel unwell.

    What causes IBD?

    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). 

    The impact of IBD on your child

    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.

    Key points to remember

    • IBD symptoms can come and go (have flare-ups or be in remission).
    • With effective treatment, your child can remain free of symptoms for long periods.
    • Treatment may include various medications and Exclusive Enteral Nutrition (EEN).  
    • Make sure you know the names and doses of your child's medicines, possible side effects and reasons your child is taking them.

    For more information

    Common questions our doctors are asked

    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 disease?

    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. 

    Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit www.rchfoundation.org.au

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Disclaimer
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.