Researchers are seeking to identify the top priorities for people living with perianal Crohn’s Disease.

Please answer this short survey if you are a person who has perianal Crohn’s disease (or have had this in the past), a family member or carer for someone with perianal Crohn’s disease, or a healthcare professional or volunteer with experience of perianal Crohn’s disease. Your opinions are important to help decide which questions relating to perianal Crohn’s disease are important for future research.

SURVEY: Qualtrics Survey | Qualtrics Experience Management

Register your interest: https://survey.zohopublic.com.au/zs/kEBbwv

We know that a lot of IBD information is tailored to younger people or those who have just been diagnosed. We’re expanding our IBD resources to better serve older people and those who have lived with IBD for a long time. We want to understand the type of information that would be the most helpful and engaging for you. 

We’re holding a focus group on the week of May 19th, where your feedback will help shape our future resources. The focus group may be held online or in-person, based on your preference.  

Register your interest here. 

Alternatively, email [email protected] with your contact information. We look forward to hearing from you! 

CCA participated in an event to raise awareness about sick kids education at Parliament House in February. 

Wayne Massuger, Head of Research, Quality and Support Programs presented about the impact of missing school on students with IBD, in particular the emotional and psychological impact. The event was hosted by Missing School an organisation that addresses chronic school absence for those with medical/mental health challenges. For more information about school and IBD.

According to the IBD State of the Nation report, about 22 per cent of children with IBD had severe problems or were unable to go to school. For more information about school and IBD, visit the link below.

CCA Youth Fun Day (Perth)

If you have any questions, please contact us on: [email protected]

PBS patient co-payment freeze

The Australian Government has implemented a freeze on the maximum patient cost for PBS medicines, effective 01 January 2025. This measure, aimed at easing cost of living pressures, maintains the 2024 co-payment rates for all Medicare and concession card holders.

General patients will experience a one-year freeze, while pensioners and other Commonwealth concession card holders will benefit from a five-year freeze.  The freeze applies to all PBS prescription medicines for eligible Medicare and Commonwealth concession card holders, aiming to prevent delays in filling prescriptions due to cost concerns.

PBS co-payment freeze | Cheaper medicines | Australian Government Department of Health and Aged Care

Thank you to everyone in the CCA community who contributed to the public consultation into use of Faecal Calprotectin (FC) tests.

The Gastroenterological Society of Australia (GESA) Led Application for faecal calprotectin for the monitoring of disease activity in patients with inflammatory bowel disease was approved by Medical Services Advisory Committee (MSAC) on 6 February 2025.

The recommendation will need to be approved by the Minister for Health and Aged Care before listing on the MBS which is anticipated to be later this year.

Faecal calprotectin_Media Release.pdf

IBD and diet – patient questionnaire

Monash Health Gastroenterology researchers are conducting a survey on the effects of diet on inflammatory bowel disease. If you have Ulcerative Colitis or Crohn’s Disease we would appreciate five minutes of your time to complete our short, anonymous survey. This research will guide our future practice around using diet in the management of IBD. Click here for a direct link to the survey: https://forms.gle/zgUDKYN8YiArvEaM7.

CCA’s recipes are not tailored to individual requirements. Please review recipes to ensure they are appropriate for you from an IBD and broader diet perspective. If you think the consumption of certain foods leads to uncomfortable digestive or other symptoms, please speak to your health care professional. Consider connecting with a specialist GutSmart Dietitian and/or Psychologist.

Ingredients

Approx. Servings: 6

500g lean beef mince

1 cup (100g) grated carrot

1 cup (100g) grated zucchini (excess liquid removed)

100g cooked and cooled chopped onion (optional)

1 tbsp Worcestershire sauce (optional)

1 tsp garlic powder (optional)

1 tsp onion powder (optional)

Pastry of choice; puff pastry (approx. 2-3 sheets)

Method

Preheat & Prepare:

1. Preheat the oven to 180°C fan-forced and prepare baking trays.

Make the Filling:

2. In a large bowl, combine the beef mince, grated carrot, grated zucchini, cooked onion (if using), Worcestershire sauce, onion powder, and garlic powder.

3. Mix well using your hands until fully combined.

Assembly of the Rolls:

4. Cut the pastry of choice lengthwise and create a thin roll of the filling mixture down the centre of each pastry piece.

5. Bring up the sides of the pastry and wrap around the sausage filling mixture. Use either water, an egg wash or butter to seal the edge tightly.

6. Cut the roll vertically to create the separate sausage roll rectangles.

Bake:

7. Arrange the sausage rolls on the lined baking trays.

8. Bake for 20-25 minutes or until golden brown and crispy.

9. If the bottoms are slightly soft, flip the sausage rolls over and bake for another 5 minutes until crispy.

Recipe Notes: (additional notes added if recipe is chosen)

Intestinal Ultrasound for Ulcerative Colitis

Ulcerative Colitis (UC) is a type of inflammatory bowel disease that affects the large bowel. The causes are not well understood, but the number of patients living with it increases each year. Currently, the gold standard investigation for monitoring UC is through the use of a colonoscopy, which can be invasive as it requires bowel preparation and carries procedural and anesthetic risks from sedation. As a result, it is not practical to repeat colonoscopies frequently to monitor the response to treatment.

Intestinal Ultrasound is a type of ultrasound currently used by gastroenterologists for monitoring Crohn’s disease affecting the small and large bowel. No fasting or bowel preparation is required, and real-time information can be obtained by the ultrasound, which, when combined with patient symptoms and stool inflammation tests (faecal calprotectin), provides an accurate assessment of disease.

A Japanese study published in 2024 with 29 patients with UC investigated if intestinal ultrasound could be directly correlated with the results of a colonoscopy. Patients had the results of their colonoscopy and intestinal ultrasound, which were performed within 15 days, directly compared. The features collected on intestinal ultrasound included bowel wall thickness, bowel blood flow, and fat, which were used to create a score that estimates inflammation. Patients with a higher score for inflammation on intestinal ultrasound had a statistically significant higher score on assessment with colonoscopies. This shows the potential of intestinal ultrasound to reduce the number of colonoscopies required for patients.

Limitations of the study include the small participant size and that it was only performed in one hospital system. This study also did not investigate rectal disease, which is a common area of disease for patients with ulcerative colitis. Despite its promise as a monitoring tool, intestinal ultrasound cannot replace colonoscopies for the diagnosis of Crohn’s disease and ulcerative colitis, as biopsies from the bowels need to be taken.

Any information provided in this article is not intended as medical advice. If you have any concerns or questions, we recommend you discuss them with your doctor.

ABC: Inflammatory bowel disease rates increasing in Australia, costing the economy billions

Author: Liana Walker

“Australians living with inflammatory bowel disease (IBD) are calling for more support and research amid warnings the often stigmatising condition is costing the economy  $7.8 billion a year. 

The IBD State of the Nation report released this week reveals Australia is leading the western world in the growth rate of IBD, ahead of Canada, the UK and New Zealand. 

The condition currently impacts almost 180,000 Australians, with that number expected to rise to 200,000 in the next 10 years. 

Despite IBD patients visiting hospitals more than other comparable chronic health condition, it is the only illness where there has been no funding for patient support over the past 10 years. “

Inflammatory bowel disease rates increasing in Australia, costing the economy billions – ABC News

9News: Harrison is one of 180,000 Aussies losing $5900 every year to common illness

Author: Maddison Leach

“Harrison Kefford has had to change career paths just to keep up with the cost of a disease affecting 180,000 Australians.

The 30-year-old writer from Melbourne was diagnosed with Crohn’s Disease, a type of incurable inflammatory bowel disease (IBD), in his mid-20s and has been scraping to pay for private health insurance, specialist appointments and other medical fees ever since.

New research from Crohn’s & Colitis Australia (CCA) shows that Aussies with IBD spend an average of $5900 in out-of-pocket costs per year and in a cost of living crisis, Kefford can’t keep up on a writer’s income.”

Harrison is one of 180,000 Aussies losing $5900 every year to common illness

Pharmacy Daily: Pharmacists to play critical role in IBD

NEW research published in the State of the Nation in Inflammatory Bowel Disease in Australia report has found that 180,000 Australians are living with IBD, and that number is increasing at a faster rate than in other countries.

The report, from Crohn’s & Colitis Australia (CCA), was launched in Canberra yesterday by Health Minister Mark Butler, and provides an in-depth assessment of Australians living with IBD, including Crohn’s disease and ulcerative colitis, highlighting potential risk factors as well as solutions for improving outcomes.

Clinical pharmacist and AdPha member Sheridan Rodda was a member of the advisory committee overseeing the project, and told Pharmacy Daily that pharmacists have a critical role to play.

“Unfortunately, we are seeing more and more Australians impacted by the debilitating symptoms of IBD,” Rodda said.

Pharmacists to play critical role in IBD | Pharmacy Daily

The Newcastle Herald: ‘It’s incurable’: rising numbers of debilitating disease sparks concern

Author: Damon Cronshaw

CHLOE Sargent went through a period of grief after being diagnosed with Crohn’s disease in 2010. Ms Sargent, of Thornton, has since been through
about 20 surgeries, including one three months ago. She’s among about 9230 people in Hunter New England and Central Coast who live with inflammatory
bowel disease (IBD), including Crohn’s and ulcerative colitis. “It is a matter of learning to live with it. It’s incurable. The biggest challenge is the effect on your mental health,” Ms Sargent, 31, said.

Living with Crohn’s: Chloe Sargent’s journey with IBD amid report | Newcastle Herald | Newcastle, NSW (Paywall)

The Australian – This ‘below the button’ disease is hitting too many Australians. Why is no one talking about it?

Author: Fiona Harari

“About 180,000 Australians live with this painful, lifelong condition involving inflammation of the gastrointestinal tract. But as cases grow globally, Australia leads the pack.

The State of the Nation report into IBD in Australia, which is being released on Tuesday by federal Health Minister Mark Butler, says that while cases are growing globally, “Australia is leading the pack”.

Prevalence is expected to increase by 238 per cent between 2010 and 2030 – the highest growth rate among Western countries. Current case numbers already far exceed more high-profile conditions such as multiple sclerosis. Yet IBD “increasingly lacks any real policy focus by governments today and is at risk of falling through the cracks”, according to the report.”

Inflammatory bowel disease on the rise in Australia because of ultra-processed food | The Australian (paywall)

Various News Corp publications:

Author: Tayla Couacaud

“Queensland has the third highest prevalence of a debilitating bowel disease that impacts 180,000 Australians, costing sufferers thousands of dollars in medical expenses.

The State of the Nation report into Inflammatory Bowel Disease (IBD) has revealed ultra-processed food is contributing to a significant rise in the disease which was released on Tuesday by federal Health Minister Mark Butler.

The incidences of IBD are rising globally, and Australia is leading the pack – with cases set to rise by 238 per cent between 2010 and 2030 – with Queensland seeing the third highest prevalence rate in the country.

The painful, lifelong condition involving inflammation of the gastrointestinal tract is projected to disproportionately impact Australia’s working population, with the peak age of onset occurring between 15 to 29 years.”

Read the full article (paywall)

Illawara Mercury: ‘Like having food poisoning 24/7’: Concern over rising rate of bowel disease

Author: Kate McIlwain

Kiama Nurse Sam Abarca counts herself lucky she was diagnosed “quite quickly” with the chronic bowel disease that made her feel like she had constant food poisoning.

As a health professional working in the Wollongong Hospital ward that looks after bowel surgeries, and with knowledge about Crohn’s disease due to a family member’s experience, she knew to keep pushing to get an answer about her concerning symptoms.

But still she was sent way by doctors and waited several months to get a diagnosis before being diagnosed 10 years ago.

Read the full article (paywall)

The Limbic: ‘Urgent action required to face increasing IBD burden’: report

Author: Siobhan Calafiore

Almost 180,000 Australians are living with inflammatory bowel disease today and many are “frequent flyers” of ED services, but funding for research and patient support lags behind other chronic conditions, new figures suggest.

The IBD State of the Nation report released by Crohn’s & Colitis Australia [link here] shows the condition impacts 179,420 Australians, with over 91,000 experiencing active disease. Prevalence was predicted to rise to 200,000 in the next 10 years, with the growth expected to outpace that of Canada, the UK and New Zealand.

The report stated that patients with IBD were among the most frequent users of the hospital system, often facing prolonged delays in diagnosis. More than one in three patients had symptoms for over a year before diagnosis, with about one in 10 experiencing symptoms for more than five years.

Read the full article (paywall)

Crohn’s & Colitis Australia Unveils New Research Findings from State of The Nation in Inflammatory Bowel Disease Report

CANBERRA, 11TH FEBRUARY 2025: Crohn’s & Colitis Australia (CCA) has announced the publication of new research findings from its State of the Nation in Inflammatory Bowel Disease (IBD) in Australia report. The research provides an in-depth assessment of the nation in relation to those living with IBD, including Crohn’s disease (CD) and ulcerative colitis (UC), highlighting potential risk factors as well as the solutions on how to improve outcomes.

Key Findings:

Incidence of IBD

• It is estimated that nearly 180,000 Australians are living with IBD today, and within this, just over 91,000 are living with active disease.
• The incidence of IBD is rising globally, and Australia is leading the pack – the growth in prevalence of IBD for Australia is expected to outpace growth in Canada, the UK and New Zealand.
• In contrast to other chronic conditions, IBD is projected to disproportionately impact Australia’s working population, with the peak age of onset occurring between 15 to 29 years.

IBD Patients are among the most ‘Frequent Flyers’ of the Hospital System

• More than 1 in 3 patients experience symptoms over a year before receiving diagnosis.
• IBD patients are found to have a higher rate per case of hospitalisation and emergency department presentation than cancer.
• Just over 1 in 10 patients experience symptoms for over five years before receiving a diagnosis.
• The delay to diagnosis results in further delays in the time to remission, with average time from diagnosis to disease remission being conservatively three years, with more than 40% of people reporting it taking more than 5 years to bring their disease under control. A cause of which is inconsistent access to multidisciplinary teams.

IBD is often associated with serious symptoms outside of the bowel

• Extraintestinal manifestations occur in 17% of patients with UC and 37% of patients with CD, including anaemia, eye disease (uveitis and episcleritis), liver disease and scarring (cirrhosis), skin ulcers and psoriasis, and arthritis.
• Patients with IBD are also more likely to develop colorectal cancer than the general population.

Mental Health Burden of IBD

• Patients report severe fatigue, brain fog and a high mental health burden of disease, placing larger burdens on the need for healthcare services.
• Many patients also experience severe anxiety and depression as a result of their IBD; with 1 in 2 people reporting anxiety, 1 in 3 reported experiencing depression as well as high rates of insomnia.
• Around 1 in 5 people reported they had severe problems or were unable to enjoy or undertake important activities that most people take for granted.
  • 17% had severe problems or were unable to date or have intimate relationships
  • 21% had severe problems or were unable to participate in sports
  • Around 20% had severe problems or were unable to travel overseas
• These findings demonstrate that IBD patients also need a more multidisciplinary approach to their care, than the current approach that is being offered.

IBD Creates Serious Implications for Children

• 18% of children with IBD had severe problems or were unable to participate in sports.
• 19% of children with IBD had severe problems or were unable to sleep well at night.
• 22% of children with IBD had severe problems or were unable to go to school.
• These findings demonstrate the increased burden of IBD on children, the effect on mental health and wellbeing presents a disadvantage to children living with IBD. The impact this has on children creates a knock on effect into adult life if they are not supported effectively from childhood.

The Economic Burden of IBD to Australia

• The total economic impact of IBD to the community in 2025 is expected to reach $7.8 billion.
• Over the next decade, in light of the increasing prevalence of IBD, the total economic burden is estimated to be a staggering $77.9 billion in Net Present Value (NPV) terms over the 2025-2035 period.
• Poorly managed IBD can be debilitating and expensive for the person, their family and Australian governments.
• The economic cost of a person living with severely active disease is 2.5 times that of a person in remission.
• After factoring in the expected loss of income, out-of-pocket costs rise to be 15% of disposable household income with a high risk of financial hardship.

“Understanding the prevalence of IBD, its burden on individuals and the Australian community is essential to the improvement in quality, equity and access to services for people living with these chronic inflammatory gut conditions,” said Leanne Raven, CEO of Crohn’s and Colitis Australia. “We hope this new evidence will help to plan the next important steps to improve quality of life for people living fearlessly with IBD”.

As a result of the State of the Nation in Inflammatory Bowel Disease in Australia Report, CCA has shared a proposed strategy to improve health outcomes with the federal government. The proposal provides options to address priorities from the report for the government to consider, calling out the need for a national IBD clinical standard, a living well with IBD program, an IBD registry and a specific fund for IBD research in the Medical Research Future’s Fund.

For more information about the full report, please visit: crohnsandcolitis.org.au

For more information, interviews or case studies of young people or parents of kids living with IBD, please contact:

Mia Borg | Maven PR | [email protected] | 0413 801 187

About Crohn’s & Colitis Australia (CCA)

Crohn’s & Colitis Australia (CCA) is a not-for-profit organisation dedicated to providing support services, advocacy, and research funding for those affected by Crohn’s Disease and Ulcerative Colitis. CCA strives to improve the quality of life for people living with these chronic conditions through education, support programs, and public awareness campaigns.

Publication: Herald Sun

Journalist: Sarah Booth

Full article: Aussie health insurer reveals gut screening as most claimed surgery | Herald Sun (PAYWALL)

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“Large numbers of Australians are turning to surgery to screen for gastrointestinal diseases, as a major health insurer reveals such procedures were their number one claim.

Medibank data shows they covered more admissions for colonoscopies and gastroscopies than any other hospital treatment in 2024.

Between January and late December, the most common reason for a Medibank-claimed hospital stay was so doctors could use an internal camera to investigate a patient’s bowel, stomach, food pipe or small intestine.

Medibank chief customer officer Milosh Milisavljevic said these were “really important procedures that can identify and diagnose a number of conditions such as Coeliac and Crohn’s disease”.