In the lead up to this year’s World IBD Awareness Day on 19 May, Victoria’s Minister for Police and Water, the Honourable Lisa Neville, has shared her thoughts on living with Crohn’s disease.

Minister Neville was diagnosed with Crohn’s in 1988 and as a young woman found it difficult to come to terms with, especially given the consequences when not managed well, or during a flare up.

“It’s taken many years to understand the effect Crohn’s can have on different parts of my body – I’ve seen the impacts in my skin and my eyes and I’m constantly vigilant for the potential of abscesses and fistulas as these can cause significant pain.

“I recall one of the hardest times I went through was developing a liver abscess during my pregnancy. It wasn’t something I was prepared for – I couldn’t possibly have imagined it before it happened.

“It’s taken me a long time to really understand the breadth of the various symptoms that can occur. Thankfully, I know now how important it is to identify risks early to prevent a flare up and how to best manage my day with treatment and medication,” Minister Neville said.

Now 34 years since she was first diagnosed, Minister Neville is grateful there are much better treatments for those living with IBD – not just a reliance on steroids – and a better understanding from the medical profession of the disease.

“But there is still stigma around the disease and a lack of understanding that can make the journey harder. For many years I shared that I had Crohn’s with only a few people and relied on my specialist and immediate family to manage it quietly, which was not always easy. To most, I kept it a secret – seeing it as a weakness.

“This was of course a mistake and meant that I didn’t get the support I need. Since sharing my condition more broadly in recent years, the burden of Crohn’s has lightened significantly. It’s made my work life easier to navigate – when and why I need time off, or to leave an event suddenly or slow down a bit,” she said.

Through her journey with Crohn’s, Minister Neville has realised how important good support and services are in living fearlessly and not feeling alone with her disease – something that Crohn’s & Colitis Australia (CCA) has provided for many years.

“CCA is not only a trusted source of up-to-date information on Crohn’s and colitis, but also provides opportunities to build support networks and help others understand the impacts of the disease,” she said.

World IBD Awareness Day is a timely reminder that the more than 100,000 Australians living with Crohn’s disease or ulcerative colitis need continued support to improve their quality of life.

World IBD Awareness Day falls during Crohn’s and Colitis Awareness Month, which offers an opportunity for people living with Crohn’s or ulcerative colitis to courageously speak up and remove the stigma around IBD to increase the public’s understanding. While most people are diagnosed with IBD between the ages of 14 and 25, it can affect anyone at any stage of life – this year’s theme for World IBD Day is #IBDHasNoAge.

To further put a spotlight on this illness, a number of buildings and landmarks around the country will be lighting up purple on 19 May. You can see the list of sites here.

With the generous support of their sponsors Janssen, Pfizer, Dr Falk, Takeda, Celltrion Healthcare and Abbvie, CCA hopes this awareness month is a chance to band together, start conversations about IBD and spread awareness and understanding of Crohn’s and colitis. Those living with these diseases can get involved with CCA’s ‘You’ve Got Guts’ campaign by sharing their brave stories and comments on social platforms to #flushthestigma.

Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029.

Crohn’s & Colitis Australia (CCA) is encouraging advocates and people living with inflammatory bowel diseases (IBD) to approach their local politician or candidate to support a proposal to fund nurses in regional centres for people living with chronic inflammatory conditions.

CCA is seeking support for their proposal as it was not taken up by the federal government in their latest budget. Election commitments from all parties and candidates in the upcoming federal election would shine a spotlight on the urgent need for regional nurses to support those living with IBDs.

This year’s federal election takes place a few days after World IBD Awareness Day on 19 May – a timely reminder that the more than 100,000 Australians living with Crohn’s disease or ulcerative colitis need continued support to improve their quality of life.

Prompt diagnosis of these conditions and early treatment with medications known as biologicals can truly transform the lives of patients – they prevent functional disability, disease progression, social and mental health impacts and healthcare costs.

Leanne Raven, CCA’s CEO, notes that only specialists can initiate these treatments, with ongoing supply requiring rigorous assessments including patient diaries and monitoring of blood test results.

“These medications have been available for over a decade yet eligible rural and regional patients have limited access to these drugs because of the lack of multidisciplinary support in the primary health sector regionally.”

“Ideally, we would prefer patients to have ready access to all three specialist medical services (Rheumatology, Gastroenterology and Dermatology), but in their absence an integrated hub-and-spoke model of care with specialised nurses integrated into existing health care networks will improve the quality of care that is lacking in these communities,“ Leanne said.

Funding is needed to make this proposal a reality and contacting local members and senators, leaders, political parties, and candidates during the federal election campaign provides a great opportunity to secure commitments.

“Political offices record the number of calls and emails they receive on an issue, and it affects their own advocacy within their party and in the community. That’s why we are encouraging our supporters to call or email their local member and other candidates,” Leanne said.

CCA worked in partnership with eight other organisations to develop their proposal, including:

• Australian Rheumatology Association (ARA), Rheumatology Health Professionals Special Interest Group Association (RHPSIG), and ARA Regional Rheumatology Committee
• Gastroenterological Society of Australia (GESA)
• Australasian College of Dermatologists
• Australian College of Nursing
• Gastroenterological Nurses College of Australia (GENCA) and IBD Nurses Association (IBDNA)
• Arthritis Australia
• Psoriasis Australia

World IBD Awareness Day falls during Crohn’s and Colitis Awareness Month, which offers an opportunity for people living with Crohn’s or ulcerative colitis to courageously speak up and remove the stigma around IBD to increase the public’s understanding. While most people are diagnosed with IBD between the ages of 14 and 25, it can affect anyone at any stage of life – this year’s theme for World IBD Day is #IBDHasNoAge.

To further put a spotlight on this issue, a number of buildings and landmarks around the country will be lighting up purple on 19 May. You can see the list of sites here.

CCA hopes this awareness month is a chance to band together, start conversations about IBD and spread awareness and understanding of Crohn’s and colitis. Those living with these diseases can get involved with CCA’s ‘You’ve Got Guts’ campaign by sharing their brave stories and comments on social platforms to #flushthestigma.

Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029.

May is IBD Awareness Month

May is National Crohn’s and Colitis Awareness Month. With more than 100,000 Australians living with Crohn’s disease or ulcerative colitis, inflammatory bowel disease (IBD) is an illness that can impact people of all ages. Victoria’s Minister for Police and Water, the Honourable Lisa Neville, was diagnosed with Crohn’s disease in 1988.

As a young woman, Minister Neville found it difficult to come to terms with this hidden illness, especially given the consequences when not managed well, or during a flare up.

“It has taken many years to understand the extent that Crohn’s can affect different parts of the body and cause significant pain. Discovering the impact on my skin and eyes, the potential for abscesses and fistulas and the impact surgery can have, even though it can help with a remission.

“It has taken me a long time to really understand the breadth of the various symptoms that can occur anywhere in my gastrointestinal tract and other parts of my digestive system. I know now how important it is to identify risks that might need early treatment to prevent a flare and know how to best manage my day with treatment and medication,” Minister Neville said.

Now 34 years since she was first diagnosed, Minister Neville is grateful there are much better treatments for those living with IBD – not just a reliance on steroids – and a better understanding from the medical profession of the disease.

“But there is still stigma around the disease and a lack of understanding that can make the journey harder. For many years I shared with only a few people that I had Crohn’s and really relied on my own ability to manage it quietly, which was not always easy.

“I relied on my Gastroenterologist and immediate family to deal with it. To most, I kept it a secret – seeing it as a weakness. This was of course a mistake and meant that I didn’t get the support I need.

“Since sharing my condition more broadly in recent years, the burden of Crohn’s disease has lightened significantly. It has made my working environment easier to navigate – when and why I need time off, or to leave an event suddenly or slow down a bit,” she said.

Through her journey with Crohn’s, Minister Neville has realised how important good support and services are in living fearlessly and not feeling alone with her disease – something that Crohn’s & Colitis Australia (CCA) also understands.

“CCA is not only a trusted source of up-to-date information on Crohn’s, but also provides opportunities to build support networks and help others understand the impacts of the disease,” she said.

Access to support and resources can be even more challenging for those living regionally with IBD. Patrick Lickiss was a teenager given limited information and limited time to process his diagnosis of Crohn’s disease before surgery.

“With limited services in regional Australia, there is often less support and information for those living with IBD in these areas. But I have mostly been affected by the lack of contact with other people experiencing IBD. I didn’t realise this was missing until I met people at a support group and felt a very overwhelming and uplifting sense of vindication for my independence developed through my experience of IBD,” Patrick said.

Patrick set up a support group in his local area of Geelong through the service offered by CCA.

“I was supported every step of the way and given full autonomy to create a safe space within my community. CCA’s information, helpline and awareness month are also invaluable in terms of increasing understanding of the disease,” Patrick said.

IBD affects 1 in every 250 people. Crohn’s disease and ulcerative colitis are the two most common types of IBD. While most people are diagnosed with IBD between the ages of 14 and 25, it can affect anyone at any stage of life.

May is Crohn’s and Colitis Awareness Month and offers an opportunity for people living with Crohn’s or ulcerative colitis to courageously speak up and remove the stigma around IBD to increase the public’s understanding.

With the generous support of their sponsors Janssen, Pfizer, Dr Falk, Takeda, Celltrion Healthcare and Abbvie, CCA hopes this awareness month will be a chance to band together, start conversations about IBD and spread awareness and understanding of Crohn’s and colitis. Those living with these diseases can get involved with CCA’s ‘You’ve Got Guts’ campaign by sharing their brave stories and comments on social platforms to #flushthestigma around IBD as #IBDHasNoAge.

As the peak support and advocacy body in Australia, CCA provides access to high quality support services and information about IBD when they need it, including through their new website, designed to make it easier for the community to find the information and resources they seek.

Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029.

– ends –

Inflammatory bowel disease (IBD) affects around 100,000 Australians – that’s 1 in every 250 people living with chronic inflammation of the digestive tract. With no cure for the disease, access to relevant and up-to-date information, and a strong support network to manage this chronic illness, are vital.  

Crohn’s disease and ulcerative colitis are the two most common types of IBD. While people are primarily diagnosed with IBD between the ages of 14 and 25, it can affect anyone at any stage of life.  

As the peak support and advocacy body in Australia, Crohn’s & Colitis Australia (CCA) plays a key role in informing people living with IBD about their condition and helping them to connect to a community that understands the pervasiveness of the disease. 

Victorian Government Minister, the Honourable Lisa Neville, was diagnosed with Crohn’s disease 33 years ago. Minister Neville says that when it comes to navigating this illness, accessible information is critical. 

“I first came across Crohn’s & Colitis Australia about 15 years into my disease. I discovered other people shared my experience and it was a trusted source of up-to-date info on Crohn’s, treatments available and steps to empower me to make decisions to minimise the impact of the disease. 

“Having access to information about your condition empowers you to not just understand what is happening but to advocate to medical professionals about how they can and should help. Knowing your local pharmacist, doctor and specialist have access to good information also helps in their treatment of your conditions and to understand when things may be going wrong,” Minister Neville explains. 

In addition to accessible information about the disease, early IBD diagnosis and treatment by a multidisciplinary team of healthcare professionals – ideally including a GP, gastroenterologist, IBD nurse, dietitian and psychologist – can greatly improve the lives of those living with these chronic illnesses, as well as reduce the need for surgery and hospitalisations. 

But not everyone has access to this level of coordinated healthcare. In an IBD Audit of 71 Australian hospitals^[1], just 1% of hospitals had a full IBD multidisciplinary team and only half had an IBD helpline. 

For those living in regional, rural and remote parts of the country, this level of healthcare and support is even harder to come by. 

Patrick Lickiss comes from regional Victoria and lives with Crohn’s disease. “With less access to health centres, multidisciplinary care and specialists in more remote regions of Australia, there is naturally often less support and information for those living with IBD in these areas. Furthermore, as IBD is often an invisible disease, it is hard to meet others experiencing IBD, a problem that is only accentuated in less populated, more regional areas of Australia. Having online services such as CCA crucially helps to bridge the gap in information accessibility and support between rural and metro areas of Australia,” Patrick explains. 

Daniel Lightowler is a clinical IBD nurse for the South Metropolitan Health Service in WA. Daniel says that poor access to health infrastructure and support in regional, rural and remote Australia makes accessing information and support a real challenge for his patients. 

“It’s very difficult for a large tertiary health service to make an impact when servicing the largest single landmass of any health service in the world. We have so many regional patients scattered through many areas of our state. We try and link our patients into any services they have within their area but often there just is nothing. That’s why having access to CCA’s website and our service’s nurse helpline can make a real difference to many patients,” Daniel explains. 

Given the challenges of COVID, it’s now not only regional parts of Australia that need to find ways to access information and supplement face-to-face specialist support.  

As Minister Neville explains, “The internet now provides so much information – maybe too much, sometimes – and it’s important like never before to have trusted sources. That’s why I so strongly support CCA – it is a safe place for information and support, and it can be trusted.” 

Patrick agrees. “CCA’s website is a powerful hub of information, advocacy, support and research within Australia. It also provides information and resources for young people with IBD, which is often incredibility scarce. CCA has been able to provide me with crucial information on things like how to travel with my drugs, explained how others live with the disease and ultimately made me feel less alone.”   

Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029. 

8 March 2022: International Women’s Day is a day to celebrate the strength, courage, and resilience of women all around the world and acknowledge the obstacles and challenges they face and surmount every day.

This year’s IWD theme is #BreaktheBias. But for women living with chronic health conditions – like Crohn’s disease and ulcerative colitis – juggling health, family and career brings on a whole set of unique challenges that are only amplified by the gender bias that all women experience.

This International Women’s Day, Crohn’s & Colitis Australia is celebrating women facing these challenges head on every day – and how they can inspire us all to #BreaktheBias and #LiveFearless.

Women like Lisa Belcher and Flic Manning.

We asked Lisa and Flic about their journey – as women – living with inflammatory bowel disease.

Q&A with Lisa Belcher & Flic Manning 

Q.     As a woman living with IBD, what unique challenges (that would not generally be experienced by men) have you had to face / overcome? 

A.     (Lisa) When I was diagnosed with IBD 4 years ago, I was determined not to let it impact my career. I thought that meant that I had to hide my disease so that I wasn’t treated differently from my “healthy” peers. This fear of bias was magnified as I am also a working mum juggling school drop-offs and homework amongst my busy professional schedule. I was worried that co-workers would think I couldn’t handle any more responsibility so I wouldn’t be considered for stretch projects or new job opportunities and that my career would stall. 

While IBD is an invisible disease, it should not be a secret disease. Living with IBD forces you to overcome different challenges that make you mentally stronger. It puts situations into perspective and that is a diverse perspective that brings value to organisations. And for those of us who are ostomates, the physical differences make us more empathetic to other types of disabilities. Let’s celebrate the benefits of IBD so that we can collectively break the negative biases associated with IBD.  

Reading the patient’s stories published by Crohn’s & Colitis Australia helped me realise what others have achieved living fearlessly with IBD. These stories helped give me the courage to openly discuss my illness at work, and I am leading by example to prove that having a chronic illness doesn’t mean the end of a fulfilling career. 

(Flic) I encountered a general societal and medical stigma because of being a woman; the idea that my experience was only emotional not physical, that I somehow had a lower pain tolerance or was being hysterical because I sought help for my symptoms. I was often asked if I wasn’t perhaps just a little “hormonal” or “sensitive” by doctors and people around me. Because as a woman you have many physiological experiences in your abdominal area it took a lot of self-advocacy to be heard – the assumption was that it was all related to my gender and reproductive system and that I wouldn’t be able to distinguish period pain from colon pain. At the time, statistically men dominated the gastroenterology field, and so I experienced medical gaslighting a lot. It is now known how much bias against women exists in medicine but at the time, experiencing this as a female teen, it was terrifying and traumatising. 

Q.     As a woman living with IBD, how do you juggle managing your health, your family and your career? 

A.     (Lisa) As a working mum, getting diagnosed with IBD meant that I had to reprioritise my life. It used to be family, career, then myself. I thought that being a good mum and a successful career woman meant that was the only choice I had. I didn’t leave enough time for the self-care required to support my health. In the end, I kept feeling worse—physically and mentally—and it impacted all areas of my life, particularly my relationship with my husband.  

It was counterintuitive to me that if I “selfishly” put myself first I would have the capacity to do more for my family and career. Yet that is what I’ve started experiencing when IBD forced me to focus on my health—both physical and mental. So now I believe that self-care isn’t selfish, it’s essential in order to juggle all of the balls each of us has in our lives. 

(Flic) A chronic health condition like IBD is deeply challenging all on its own. Adding anything else to that requires a lot of self-awareness. And frankly, women are expected to play many roles in life and do each of them simultaneously and perfectly. The key for me has been investing in my self-care routines and making them a non-negotiable priority, and recognising that not being perfect but being vulnerable and authentic is beneficial to myself and those around me. I discovered that putting time into my wellbeing gave me the health levels needed to be able to give to my family and career. I became dedicated to working out what types of self-care I could do consistently within my lifestyle and budget, and it made living with IBD much more manageable because it also gave me a more resilient mindset, and made me more present to boot. This also allowed me to let go of notions of being everything to everyone – now I show people my imperfections and it’s so much healthier as it gives them the freedom to do the same. 

Q.     Do you have any advice / tips / pearls of wisdom that you would like to share with other women living with IBD – Particularly those that have recently been diagnosed with IBD? 

A.     (Lisa) When I was diagnosed with IBD, I was focused on the medical solutions like finding the right gastroenterologist and treatment solutions. Perhaps I was in denial that IBD meant a change in lifestyle, but in hindsight, I should have spent as much time on the mental health as I did on the physical health.  

There is so much unknown about IBD, which means that there are no right answers or definitive actions you can take to get better. I found this particularly difficult with the information on diet…I thought what I ate could at least be something I could control yet there was so much contradictory advice. I got to the point where I was fearful that everything I ate had the potential to make me sicker. My stress and anxiety levels continued to rise, and I continued to get sicker. 

One of the most helpful discussions I had was with the Crohn’s & Colitis Australia Nurseline. This conversation took place after I found out that Crohn’s had damaged my entire Colon; it was my lowest point as I felt defeated by the disease. The nurse spent 90 minutes talking me through all of the contradictory advice and various options. She answered every question I had and proactively addressed questions I did not even know to ask.  She helped me come up with a path forward despite the uncertainty. This was exactly what I needed to kick-start my self-care journey.  

In hindsight, I should have started to focus on my self-care in order to reduce stress from the start, and that is my advice for anyone newly diagnosed with IBD. Self-care will mean different things to different people.  It could be support from a physiologist, dietician, or osteopath. It can also mean getting help through services such as dog walking and meal delivery. I stopped considering these splurges and started thinking of them as investments in my health.

(Flic) Please know that there is a community of people with IBD that will support you. Your body is not your enemy, it will sometimes seem like it is screaming at you, but you can make it a conversation rather than an argument by listening to it and learning to shower it in self-care. You don’t have to be perfect, you don’t have to do it alone and it is ok to not be ok. Make sure you have someone you can talk to about it, and if for any reason you don’t feel listened to by your medical team, please know you can ask for a different one. 

A very strong field of 15 candidates applied for two $75,000 CCA IBD PhD Scholarships, offered over 3 years.

CCA congratulates the two successful candidates:

• Jessica Fitzpatrick
  A dietitian from Monash University and Alfred Health for her study ‘The role of a low emulsifier diet in treating Crohn’s disease’.
  Dietary emulsifiers are a category of food additives that are found readily available in the food supply. In animal models, emulsifiers cause inflammation in the gut, similar to that seen in Crohn’s disease. This project aims at investigating if removing emulsifiers from the diet of people with Crohn’s disease induces disease remission.
• Dr Ralley Prentice:
  From Monash University/Monash Health/Hudson Institute of Medical Research/St Vincent’s Hospital Melbourne will undertake the Pregnancy in Crohn’s and Colitis: Observations, Levels and Outcomes Extension study.
  Also known as the PICCOLO-X study, it is a multicentre study with observational and scientific aims. It is investigating how to accurately predict IBD activity in pregnancy and subsequently any changes to the foetal/neonatal immune system and brain development. The study will define how thiopurine metabolite, vedolizumab and ustekinumab levels vary through pregnancy, how much drug crosses the placenta, how quickly the baby clears the drug and finally, how this may affect the immune system of both mum and baby.