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Resources & Services Available

In this section, we provide a list of resources and services that are most relevant to those with inflammatory bowel disease (IBD), including a brief overview of the information and support each of them provides, as well as contact details as appropriate

In Australia, we’re fortunate to have a broad range of resources and services available for people with chronic conditions such as IBD. By taking advantage of the information, practical advice, and support that these resources and services provide—as and when you might need it—there should never be any need to feel ‘alone’ with your condition.

Note: Most of the resources and services listed here do NOT provide health advice over the phone. If you have concerns about a health condition that you’d like to discuss with a qualified health professional, you’re advised to:

  • Contact your doctor
  • In an emergency situation, call triple zero – 000
  • Contact NURSE-ON-CALL (www.health.vic.gov.au/nurseoncall/) at 1300 60 60 24 for health advice from a registered nurse 24 hours a day, 7 days a week.

Services that do feature a telephone helpline are indicated accordingly.

All of the resources and services contained in this page have websites that you can visit for more information. The websites have ‘Contact Us’ sections that will give additional information on how to email or post them.

On this page:

Australian Government Resources

Better Health Channel

The Better Health Channel is a Victorian government initiative that aims to improve the health and wellbeing of the Victorian community. The website contains fact sheets about a range of health conditions as well as tips for healthy living, recipes for healthy eating, directories, interactive features such as quizzes and health tools, plus much more. www.betterhealth.vic.gov.au

Centrelink

Centrelink provides information about how people with mental illness and their carers can get the support they are entitled to, including sickness allowance, disability support pensions and psychological treatment. www.humanservices.gov.au

Department of Health

The Australian Government Department of Health has a website for families, seniors, adults, parents, teenagers, carers etc. Topics covered include education and prevention, conditions and diseases, health products, rural health, services etc. www.health.gov.au

Food Standards Australia New Zealand

Food Standards Australia New Zealand has publications and fact sheets for the consumer. Formerly known as ANZFA (Australia New Zealand Food Authority). www.foodstandards.gov.au

healthdirect Australia

healthdirect provides easy access to quality health information and advice online and over the phone from a registered nurse on how to manage your condition at home. It is available 24 hours a day, 7 days a week.

T: 1800 022 222 (helpline) www.healthdirect.gov.au

National Health and Medical Research Council

The NHMRC is Australia’s peak body for supporting health and medical research, development of health advice for the community, professionals and government. Also provides advice on ethical behaviour in health care and research. http://www.nhmrc.gov.au

Therapeutic Goods Administration (TGA)

The TGA safeguards and enhances the health of the Australian community through effective and timely regulation of therapeutic goods. www.tga.gov.au

 

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State-Specific Resources

NSW health

Information about health and healthcare services and programs for consumers and health professionals living in New South Wales. www.health.nsw.gov.au

(Northern Territory) Department of Health and Community Services

Information about services available for the health and well-being of people living in the Northern Territory. www.nt.gov.au/health

Queensland health

Information about a range of services aimed at achieving good health and well-being for all Queenslanders.

T: 13 HEALTH (13 43 25 84) (Helpline 24 hours a day, 7 days a week) www.health.qld.gov.au

SA health

The gateway to South Australia’s public healthcare system with information for the community and healthcare professionals.

T: (08) 8226 6000 www.health.sa.gov.au

(Tasmania) Department of Health & Human Services

The gateway to a range of health and human services provided in Tasmania.

T: 1300 135 513 (general inquiries) www.dhhs.tas.gov.au

Victorian government health information

Information about health and the provision of health services in Victoria.

T: 1300 650 172 www.health.vic.gov.au

WA health

Information about health and health initiatives in Western Australia. www.health.wa.gov.au

 

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Finding and Accessing Public Toilets

CCA Can’t Wait Affiliates

The Can’t Wait Card is issued to members of CCA who have been formally diagnosed IBD to help them gain access to a toilet in times of urgency. By recognising the card, retailers, businesses and venue operators allow people IBD access to their toilets when needed.

T: 1800 138 029 (Helpline) www.cantwait.net.au

National Public Toilet Map

The National Public Toilet Map shows the location of more than 16,000 public and private public toilet facilities across Australia. The information provided about each toilet includes its location, opening hours, availability of baby change rooms, and accessibility for people with disabilities.

 

 

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Health Organisations

Ankylosing Spondylitis (AS) groups of Australia

This organisation provides information and support for people living with ankylosing spondylitis (an extra-intestinal manifestation of IBD) as well as their partners, families, friends, and the wider Australian community. AS has support groups in most states of Australia. www.asaustralia.org

Arthritis Australia

Arthritis Australia provides support and information to those with arthritis, as well as their families and friends. It also aims to keep health professionals informed. www.arthritisaustralia.com.au

Australian Council of Stoma Associations (ACSA)

ACSA represents the interests of 22 regional Stoma Associations in Australia. Visit the ‘Member Associations’ section of their website to find the local stoma association in your area. www.australianstoma.com.au

Australian Divisions of General Practice

The Australian peak body representing doctors (General Practitioners) throughout Australia. www.agpn.com.au

Australian Hypnotherapists’ Association

A useful site for those wanting to find an accredited hypnotherapist. www.ahahypnotherapy.org.au

Coeliac Australia

Coeliac Australia promotes the purpose and objectives of Coeliac Societies in each state. The state Coeliac Societies provide information and support to people diagnosed with coeliac disease and their families, sufferers of dermatitis herpetiformis and those medically diagnosed as requiring a gluten-free diet.

T: 1300 458 836 (Helpline) www.coeliac.org.au

Continence Foundation of Australia

This organisation is working towards a community free of the stigma of incontinence, and provides information on funding, referrals, and products. It also offers free resources to individuals and professionals to help treat weak bladder, leakage, constipation, and bedwetting.

Continence Foundation Australia also offers the National Continence Helpline Service. This is a free telephone advisory service staffed by a team of continence nurse advisors who provide information, education and advice to callers with incontinence or who are caring for someone with incontinence. The Helpline also provides information and advice to health professionals.

T: 1800 33 00 66 (Continence Helpline, 8am to 8pm AEST Monday to Friday) www.continence.org.au

Chronic Illness Alliance

The Chronic Illness Alliance (CIA) has 55 member organisations across Australia. It aims to improve health policy and health services for anyone living with chronic illness.

T: 03 8809 064103 8809 0626 www.chronicillness.org.au

Genetic Support Network Victoria

Genetic Support Network Victoria is an organisation committed to promoting the interests and wellbeing of anyone affected by genetic conditions.

T: (03) 8341 6315 www.gsnv.org.au

IBDclinic.org.au

IBDclinic.org.au is an online mental health service offering information, assessment, and online treatment programs (‘eTherapy’) for anxiety and/or depression for individuals with diagnosed with IBD. www.ibdclinic.org.au

Ileostomy and Internal Pouch Support Group (IA)

IA is a registered charity in the UK. Its primary aim is to help those who have an ileostomy or ileo-anal pouch following colectomy through the provision of information and support. www.the-ia.org.uk

Irritable Bowel Information & Support Association of Australia Inc. (IBIS Australia)

IBIS Australia provides information and support for those living with irritable bowel syndrome, and their families. www.ibis-australia.org

Osteoporosis Australia

Osteoporosis Australia is a fully registered charity that aims to improve awareness about the condition in the Australian community and to reduce fractures. The organisation provides services and information to the community and health professionals.

T: 1800 242 141 www.osteoporosis.org.au

Rural Doctors Association of Australia (RDAA)

RDAA is a national body representing the interests of rural medical practitioners throughout Australia, and works towards excellent medical care for rural and remote communities.

T: (02) 6239 7730 rdaa.com.au

YOU – Young Ostomates United

This is an Australian-based, non-profit organisation that aims to encourage support and friendship between young people with a stoma, their families and friends and to provide resource material to both new and well-established ostomates.

YOU activities include regular informal social gatherings, educational meetings, peer counselling, and supporting ostomy projects, including World Ostomy Day. www.youinc.org.au

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Support Services

Carers Australia

Carers Australia provides the latest information, research, policies and services for people caring for someone with an illness or disability, including mental illness.

T: Ring 1800 242 636 to contact the carers’ association in your state or territory. www.carersaustralia.com.au

Chronic Illness Peer Support (ChIPS)

ChIPS is for 12 to 25–year olds living with any type of chronic illness or medical condition. It aims to provide support for the emotional impact, feelings of isolation, anger and fear that commonly occur in young people living with a chronic illness. The program is based in Melbourne at the Centre for Adolescent Health, Royal Children’s Hospital. ChIPS programs are also available in Bairnsdale (regional Victoria), Sydney (NSW) and Mackay (QLD).

T: 03 9345 6616 www.rch.org.au/chips

Disability Services Australia (DSA)

DSA provides information about the rights of people with disabilities and is one of Australia’s largest and most respected providers of employment and community support services for people with a disability.

T: 1300 372 121 www.dsa.org.au

IBD Support Australia

IBD Support Australia provides online support and resources for those with IBD. It is run by volunteers who have IBD or who have been affected by IBD in some way. The organisation provides a range of online resources, including online forums that offer support to others. www.ibdsupport.org.au

Self Help Queensland (SHQ)

SHQ is a not-for-profit organisation comprising a network of self-help and support groups. It carries out a range of activities that help establish, develop, promote and sustain Self Help and Support Groups in Queensland. Their aim is to support those who are seeking their own solutions to improve their wellbeing.

T: (07) 3344 6919 www.selfhelpqld.org.au

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Diet and Nutrition Services

Dietitians Association of Australia

The Dietitians Association of Australia can help you to locate a dietitian in your state or territory. Their website also offers useful tips and advice for healthy eating.

T: 02 6163 5200 www.daa.asn.au

Nutrition Australia

Nutrition Australia is a community-based organisation that aims to provide scientifically based information to help all Australians achieve optimal health through food variety and physical activity. www.nutritionaustralia.org.au

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Mental Health Services

Australian Psychological Society (APS)

APS is the premier professional organisation for psychologists in Australia, representing over 21,000 members. One of its services, the APS Find a Psychologist Service, is an online, telephone, and e-mail service for the general public, GPs, and other health professionals who are seeking the advice and assistance of a qualified APS Psychologist. https://www.psychology.org.au/FaP/

beyondblue

beyondblue is a national not-for-profit organisation that works to achieve an Australian community that understands depression and anxiety, empowering all Australians, at any life-stage, to seek help. www.beyondblue.org.au

Parentline

Parentline provides a statewide confidential telephone counselling service to parents and carers of children aged from birth to 18 years. Professional counsellors are able to explore a variety of issues that affect parenting and relationships.

T: 13 22 89 (8am to midnight 7 days a week) www.parentline.vic.gov.au

SANE Australia

SANE Australia is a national charity helping all Australians affected by mental illness lead a better life—through support, training, and education.

T: 1800 18 SANE (7263) (9 to 5 Monday to Friday) www.sane.org

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You can help too!

If you happen to know of a useful resource or service that is not included on this page, let us know by calling CCA at 1800 138 029.

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The latest news and Research

News

10 tips to feel better during flare-Ups

Posted: November 4 2018

You’ve had weeks on end symptom free, but you know it can’t stay this way forever. As people living with Crohn’s disease, we are often waiting for the other shoe to drop. When will Crohn’s rear its ugly head once again? Flares are a frustrating, unfortunate reality with Crohn’s. To help you the next time […]

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News

Crohn’s disease can’t stop Shane

Posted: October 22 2018

A Bunbury father is shaking off any ignominy around a disease many are reluctant to speak out about with an ultimate goal of finding a cure. Shane Maher was diagnosed with Crohn’s disease at the age of 26. “My life is different, I have to be mindful at all times of my condition,” the now […]

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News

Nobel Prize in Chemistry awarded for using evolution to develop adalimumab (Humira)

Posted: October 8 2018

Scientists Frances Arnold, George Smith and Sir Gregory Winter have won the 2018 Nobel Prize in Chemistry for research using directed evolution to produce enzymes for new chemicals and pharmaceuticals, the award-giving body says. “This year’s Nobel Laureates in chemistry have been inspired by the power of evolution and used the same principles — genetic […]

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News

Breastfeeding can limit Crohn’s progression in children

Posted: October 8 2018

Children with Crohn’s disease who are breastfed are less likely to experience progression to stricturing or penetrating disease, while other environmental factors, like smoking, are linked to adverse events among this population, according to research published in The American Journal of Gastroenterology. Ashwin N. Ananthakrishnan, MD, MPH, of the division of gastroenterology at Massachusetts General Hospital, and colleagues examined […]

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Research

Family history tied to nearly eightfold increased CRC risk for IBD patients

Patients with IBD who have a first-degree relative with a history of colorectal cancer have a higher risk for also being diagnosed with that cancer.

Patients with inflammatory bowel disease who have a first-degree relative with a history of colorectal cancer have a higher risk for also being diagnosed with that cancer, according to research published in Clinical Gastroenterology and Hepatology. N. Jewel Samadder, MD, MSc, of the division of Gastroenterology and Hepatology at the Mayo Clinic in Phoenix, Arizona, and colleagues wrote that although […]

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News

Colonoscopies: Why are they performed and when should you have them?

Posted: September 7 2018

A recent study found up to 20 per cent of all procedures performed in a New South Wales hospital were either unhelpful or harmful. Some of these, which included performing a colonoscopy for constipation, were becoming more prevalent. A colonoscopy is a test where a small, flexible tube is inserted into the bowel to check for abnormalities […]

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