Inflammatory bowel disease (IBD) is a condition that causes inflammation in the digestive system. 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 (life-long) 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).

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 (EEN)

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 water and small amounts of chewing gum or barley sugar.  
• 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.

Resources

IBD Fact Sheets

RCH Kids Health Info: Inflammatory Bowel Disease Fact Sheet

RCH Kids Health Info: Inflammatory Bowel Disease: Information for School

RCH: IBD and sexual - reproductive health in young people

GESA Fact Sheet: Inflammatory Bowel Disease

GESA Fact Sheet: Diet and IBD

GESA Fact Sheet: Vaccinations & IBD

GESA Fact Sheet: Travel & IBD

Crohn’s & Colitis Australia: Resources in Languages Other Than English

Crohn’s & Colitis Australia: Young Adult Support

Crohn’s & Colitis Australia: Youth Empowerment Program (Peer Support Group)

Medication Fact Sheets

Corticosteroids

Thiopurines (azathioprine)

Methotrexate

5ASAs (mesalazine)

Biological Therapies

Infliximab

Adalimumab (Humira)

Vedolizumab

Ustekinumab for IBD

RCH Resources

RCH Adolescent Transition to Adult Care

Chronic Illness Peer Support (ChIPS) Program  

Comfort Kids: Procedural Support

Education Insititute

Contacts

IBD Clinical Nurse Consultants

(03) 9345 5082, IBD.Nurse@rch.org.au

Gastro Dietician 

(03) 9345 9300, GastroDieticians@rch.org.au

Gastroenterology Department

(03) 9345 5060, Gastro.Dept@rch.org.au

By Gastro & IBD Team updated January 2024, SA