Last updated: 1 September 2026

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A safe, supportive space for families living with IBD

IBD Kids Australia is a place for children, teens, parents and families living with inflammatory bowel disease (IBD) to feel less alone, find helpful information and share their experiences.

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Our community is built on kindness, respect and understanding. Everyone’s experience with IBD is different, and there is no single “right” way to live with it.

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Please help us keep this a safe and welcoming space for everyone.

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Be kind and respectful

Everyone who visits IBD Kids Australia deserves to be treated with kindness and respect.

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Please:

• Be supportive of other people’s experiences.

• Respect that families may make different choices about treatment, food, school and everyday life.

• Avoid judgement, criticism, shaming or personal attacks.

• Remember that there is a real person and family behind every story.

 

Share experiences, not medical advice

It is completely okay to share what has worked or not worked for you or your family.

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However, please remember that what works for one person with IBD may not work for another.

Please avoid telling someone to:

• Start, stop or change a medication.

• Change their child’s treatment.

• Follow a specific diet as a cure for IBD.

• Ignore symptoms or delay seeking medical care.

 

IBD Kids Australia provides general information and personal experiences. It does not replace advice from a child’s doctor, gastroenterologist, dietitian or other qualified healthcare professional.

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Respect privacy

Please protect your own privacy and the privacy of others.

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Avoid sharing:

• Full names or identifying details of children.

• Home addresses, phone numbers or other private contact information.

• Medical records or documents containing personal information.

• Photos of other children without permission.

• Information about another person that they have not agreed to share publicly.

 

Parents and carers should think carefully about how much personal information about their child they are comfortable sharing online.

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Share Your Story

Your story matters.

Living with IBD can sometimes feel lonely. Sharing your experience can help another child, teenager or parent realise that they are not the only one going through it.

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You can use Share Your Story to tell us about your experience with IBD.

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Your story could be about:

• Getting diagnosed.

• Your first flare.

• Going to school with IBD.

• Hospital stays or appointments.

• Finding ways to manage everyday life.

• Friendships and relationships.

• Sport and activities.

• Food and eating with IBD.

• Feelings, worries and confidence.

• Growing up with IBD.

• Supporting a child with IBD.

• Something you wish you had known when you were first diagnosed.

• A positive moment, achievement or something you are proud of.

 

You do not need to have a perfect story. Real experiences can be messy, difficult, funny, frustrating, hopeful or a mixture of all of these.

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Before you share

Please only share information that you are comfortable having published on the IBD Kids Australia website.

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Remember that anything shared online may be viewed by other people and may remain accessible for a long time.

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If you are sharing a story about your child, please consider whether they would be comfortable with that story being publicly available now and in the future.

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Please don't include

For everyone's privacy and safety, please don't include:

• Full names of children or other identifiable people.

• Addresses, phone numbers or email addresses.

• Information that could identify another child or family.

• Detailed descriptions of graphic or distressing medical experiences.

• Instructions telling others how to use medications or treatments.

• Claims that a particular treatment, supplement, food or diet will cure IBD.

• Content that is abusive, threatening, discriminatory or deliberately harmful.

 

Stories may be reviewed before publication

Stories submitted to IBD Kids Australia may be reviewed before they are published.

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We may edit a story for spelling, grammar, length, readability or privacy. We may also remove information that could identify a child or another person.

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We may choose not to publish a submission if it does not fit our community guidelines or if we believe publishing it could put someone at risk.

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Submitting a story does not guarantee that it will be published.

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Your story, your choice

You can choose how you would like your story to appear. Depending on the options provided when submitting your story, you may be able to use your first name, initials, a nickname or remain anonymous.

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Please only submit someone else's story or information if you have their permission to do so.

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Keep it safe for kids and teens

IBD Kids Australia is designed to support children and young people as well as parents and carers.

Please keep this in mind when sharing content.

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Avoid unnecessary graphic descriptions, frightening content or language that may be inappropriate for younger readers.

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We want young people to be able to explore IBD Kids Australia without feeling judged, frightened or overwhelmed.

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Different experiences are welcome

There is no one way to experience IBD.

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Some people may have mild symptoms. Others may have severe disease, hospital admissions or surgery.

 

Some people may feel comfortable talking about their IBD, while others may prefer to keep it private.

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Please don't compare one person's experience with another or suggest that someone is not “sick enough” to feel the way they do.

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If someone needs urgent help

IBD Kids Australia is not an emergency or medical advice service.

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If someone is seriously unwell or needs urgent medical attention, they should seek help from their healthcare team or appropriate emergency medical services.

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Help us build a supportive community

By sharing your experiences with IBD Kids Australia, you can help another family feel understood, prepared and a little less alone.

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Be kind. Be respectful. Share honestly. Protect privacy.

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Most importantly, remember:

Your story matters, and you never have to share more than you are comfortable sharing.

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