Crohn's & Colitis Australia

Music? Podcasts? What specifically? Let us know what you'll be listening to ahead of the Live Fearless Challenge!

Sign up for the challenge here: https://www.livefearlesschallenge.com.au/

The card displays the diagnosed person’s name and CCA member number, and identifies that person as someone who requires urgent access to a toilet due to a medical condition.

The condition means that the need for access to a toilet is sometimes extremely urgent and not being able to access one can result in physical pain and embarrassment. Our research shows that this is a very occasional need but when it is required it is urgent and very valuable to the wellbeing of individuals with Crohn’s or colitis.

The Can’t Wait Card is available to all CCA members. We encourage anyone diagnosed with Crohn’s disease or colitis to become a member of CCA to access the many services and benefits of membership. After joining as a member you will be issued your Can’t Wait Card.

Get your orders in now!

Order our LFC merch by Monday to ensure that it arrives in time for the Live Fearless Challenge.

Let everyone know why you're running, walking, swimming, going to the gym, meditating, dancing or another activity of your choice this September.

Funds raised go towards critical research, resources and services for people living with Inflammatory Bowel Disease.

https://crohnsandcolitis.org.au/shop/

"Managing your Crohn’s or colitis independently can be a bit overwhelming at first but you’re not alone. Many other young people feel the same way when leaving their paediatric team so it’s perfectly normal to need help. We have some tips here for you so you can plan your own transition pathway."

Read our resource on moving from paediatric to adult care below. You can also contact Nurseline to ask questions and develop strategies surrounding this, and any other topic that might be of interest.

https://crohnsandcolitis.org.au/about-crohns-colitis/moving-from-paediatric-to-adult-care/

https://crohnsandcolitis.org.au/support/ibd-telephone-helplines/ #:~:text=Just%20call%201800%20138%20029,press%20option%202%20for%20NurseLine

"Up to 80 per cent of Crohn's patients need surgery in their lifetime and most require more than one procedure, meaning even more medical bills.

"It's quite likely I will need another surgery within five years of that surgery, and then again," Muir says. "It's a way to manage it. It's not a cure."

A huge thanks to Sophie for sharing her story with 9Honey. You can register for the Live Fearless Challenge, and support Sophie as she completes the challenge via the link below.

https://honey.nine.com.au/latest/crohns-disease-colitis-australia-sophie-muir-exclusive-interview/98cff9ae-d652-4b75-92ac-19f289785ddb

https://www.livefearlesschallenge.com.au/fundraisers/sophiemuir/live-fearless-challenge

https://www.livefearlesschallenge.com.au/

Doctors ignored signs of Sophie's incurable disease. Then they saw her legs Doctors ignored signs of Sophie's incurable disease until her legs started swelling to twice their normal sizeBy Maddison Leach| 17 hours agoRed welts bloomed over Sophie Muir's skin almost overnight, like huge mosquito bites covering her calves and ankles. They were the first outward sign of the in...

"Lee’s paper, published in Nature, is one of several recent reports offering hope that people with IBD could one day have better treatment options tailored to their disease. Lee and his colleagues found that changes in the activity of a gene that is important in the immune system could contribute to some cases of the disease. Another study found that some people with IBD make antibodies that disable a pivotal anti-inflammatory protein and a third study tracked how populations of gut bacteria adapt to an inflamed environment."

You can read the full Nature article in the link below

The mysteries of inflammatory bowel disease are being cracked — offering hope for new therapies Advances in understanding the causes of the autoimmune disorder could aid in matching people with the right treatment.

Our Sydney online support group is meeting tonight!

Date: 20/8/2024
Time: 8pm (AEST)

Email us at [email protected] to ask any questions, and to join the meeting.

The Pharmaceutical Benefits Advisory Committee (PBAC) is seeking consumer feedback on IBD medications which are being considered for PBS listing.

If you would like to provide feedback on a USTEKINUMAB biosimilar medicine (Steqeyma®), and BUDESONIDE Suppository 4 mg (Budenofalk®) then send us an email about what difference it has made/would make to your life to [email protected].

We will then forward all comments consolidated to PBAC. The closing date for comments to CCA is 23 September 2024.

https://crohnsandcolitis.org.au/advocacy/advocacy-campaigns/

We've had some incredible people share their story with us over the years - which you can read here: https://crohnsandcolitis.org.au/personal-stories/

If interested in being featured on our Personal Stories page, get in touch with us at [email protected], or share your story via the link below.

https://crohnsandcolitis.org.au/share-your-story/

CCA support group meetings provide a safe and supportive environment where individuals living with Inflammatory Bowel Disease can express themselves openly and receive support and understanding from others with similar experiences.

Find your nearest support group here.
https://crohnsandcolitis.org.au/support-groups/

Now's the time to sign up!

https://www.livefearlesschallenge.com.au/register/live-fearless-challenge

"By becoming a member of Crohn’s & Colitis Australia, you help build a stronger patient community that exists to support people living with Crohn’s disease or ulcerative colitis, and their families and carers.

Explore the range of benefits available as a member, or get started now!

https://crohnsandcolitis.org.au/how-to-help/membership/

Raise funds your way for people living with Inflammatory Bowel Disease. Run, walk, swim, cycle, meditate, practice yoga or mindfulness. The choice is yours! All funds raised go towards vital resources, research and services for people living with Inflammatory Bowel Disease.

Learn more about the Live Fearless Challenge below. You can also book an appointment with our IBD Nurseline service to develop an exercise plan that's suitable for your needs.

https://www.livefearlesschallenge.com.au/

https://crohnsandcolitis.org.au/support/ibd-telephone-helplines/

Image credit: The Simpsons

Now's the perfect time to sign up for the Live Fearless Challenge!

Move 150 kilometres or equivalent in September to raise vital funds and awareness for people living with Inflammatory Bowel Disease. Run, walk, swim, cycle, dance, meditate - it's up to you as to how to complete the challenge. You can do it as an individual, or as a member of a team.

Funds raised go towards research (research scholarships and support for clinical projects), support services (including our IBD Nurseline, CCA support groups and youth events) and more.

Sign up today!

https://www.livefearlesschallenge.com.au/

"I have learned that stress plays a huge role in making my symptoms worse so now I try to limit my stress and how worked up I get about things, even though it is much easier said than done. I stay active at work, but I make sure to take time out for myself when I get home. I also surround myself with the people who support me and kick negative people from my life!

I was so scared and I thought that my life was over, but nine months later I am learning how to manage it and how to not let it define me! My advice for others with IBD is to join support groups and talk with others who are struggling. You may be able to help each other and also learn new things!"

You can read Kayleigh's full story in the link through the link below. You can learn more about joining a support group below.
https://crohnsandcolitis.org.au/stories/i-was-so-scared-and-i-thought-that-my-life-was-over-but-nine-months-later-i-am-learning-how-to-manage-it-and-how-to-not-let-it-define-me-kayleighs-story/
https://crohnsandcolitis.org.au/support-groups/

Visit the link below in our bio to find your nearest IBD service locator.
https://crohnsandcolitis.org.au/ibd-service-locator/

Australia’s First-Ever IBD State of the Nation Survey

WE NEED YOUR HELP!

Crohn’s & Colitis Australia is pleased to announce that we are developing Australia’s first ever Inflammatory Bowel Disease State of the Nation report.

This survey will form an important part of the evidence we need to advocate for the policy reforms and investments that will improve the lives of people living with IBD across Australia.

It will identify the challenges associated with living with IBD and quantify the health, social, financial and economic costs of IBD to Australian families.

We know this is a big ask of you, but your experience and ideas are important to us and can help our team advocate for changes that will lead to better outcomes for people living with IBD across Australia.

Let’s get started. You can access the survey here:
https://www.surveymonkey.com/r/CCAIBDStateoftheNation

Aaron Sanders is one of our Live Fearless Champions, who has bravely shared his story with us.

We want to hear your story. Why are you participating in the LFC? What would you like people to know about living with IBD? Let us know in the comments, or by emailing us at [email protected]. You can also sign up to the Live Fearless Challenge via the link below.

https://www.livefearlesschallenge.com.au/

https://crohnsandcolitis.org.au/share-your-story/

Our now regular fortnightly post -- We want to know what you're having for dinner tonight!

Diet and IBD is a much discussed topic, with lots of research occurring in this area. In general, there are no specific foods that everyone with IBD must avoid. If you think certain foods or beverages might be affecting you, consider talking to an IBD-informed dietitian.

You can learn more about nutrition and IBD in the link below, and book an appointment with our IBD Nurse for advice and guidance relating to this, and other topics. You can also explore our recipe page for inspiration. As always, if any of these ingredients are flare foods for you, please omit them or replace them with an alternative item.

https://crohnsandcolitis.org.au/living-with-crohns-colitis/lifestyle/nutrition/

https://crohnsandcolitis.org.au/support/ibd-telephone-helplines/ #:~:text=Just%20call%201800%20138%20029,press%20option%202%20for%20NurseLine

https://crohnsandcolitis.org.au/category/recipes/

Celebrate the Live Fearless Challenge 2024 with a gentle walk (about four kilometres) along the River Torrens in Adelaide.

When: Sunday 15 September from 6.45am (for a 7am start)

Where: starting from the Riverbank Lawns, we will enjoy a gentle walk along the river, looping back to the Adelaide Convention Centre in apprximately 45 minutes.

Who: everyone! Bring your friends and family, pets welcome too!

We'd love for you to join us! Register here: https://crohnsandcolitis.org.au/live-fearless-challenge-adelaide-walk/

Feel free to get in touch at [email protected] if you have any questions.

A few pics from our previous Camp Fearless events.

After a break the CCA team is excited to invite teens living with IBD to take part in our Camp Fearless! This year the camp will take place at the Camp Manyung, Mount Eliza VIC 3930 on Victoria’s stunning Mornington Peninsula.

We've booked the Regatta House, a modern, self-contained lodge that is ideal for small groups of up to 30 people. The Regatta House is spacious with two large and six smaller bedrooms, five standard bathrooms, and one accessible bathroom.

Activities range from snorkeling and sea kayaking to the giant swing and flying fox, to group activities like beach carnival. There'll also be plenty of time to relax and connect with other teenagers who understand what it's like to live with IBD.

It's not too late to sign up! You can express your interest by contacting us at [email protected], and can register via the link below.

https://crohnsandcolitis.org.au/camp-fearless-registration/

Join CCA's Strava Club!

Here, you can log your achievements, celebrate the wins and connect with the community.

Visit the link below to join the club.

https://strava.app.link/XMDryVXODLb

What your Live Fearless Challenge donations contributes to. Help to support vital research, services and resources for everyone living with IBD.

Sign up, and support our champions below.

https://www.livefearlesschallenge.com.au/

"Despite the challenges, I eventually found the strength to pursue my passion for mental health and disability advocacy. Returning to study and gaining qualifications to work in this field has been a beacon of hope for me in my journey. It’s a passion I might never have discovered if not for my illness. Through it all, I’ve come to realise the importance of using every part of my life to overcome the obstacles presented by Crohn’s disease, and to elevate the voices of others who are experiencing the same challenges. I believe this is where we can make change happen.

While I might not have reached remission yet, I hold onto the hope that there will be a treatment that works for me in the future. In the meantime, I am committed to using my story to support others living with chronic illnesses and disabilities, and to surrounding inflammatory bowel disease (IBD). [I] truly hope to continue to advocate for a more inclusive and understanding world.""

You can read Lauren's story, and share your own story, via the links below. You can also get in touch with u at [email protected]

https://crohnsandcolitis.org.au/stories/elevating-the-voices-of-others-laurens-story/

https://crohnsandcolitis.org.au/share-your-story/

We are wishing the best of luck to those participating in the City2Surf tomorrow and will be fundraising for Crohn’s and Colitis Australia.

CCA relies on the generosity of the Crohn’s and Colitis community to help raise much needed funds towards essential support services and investment into research scholarships.

You can learn more about fundraising for CCA through the link below.
https://crohnsandcolitis.org.au/how-to-help/fundraise/

The #1 reason people donate to charities is because they were asked!

The Live Fearless challenge is CCA's main annual fundraiser. We need your help to spread the word, so we’ve created some tools, tips and social tiles on the 'Resources' page to help you with your fundraising.

Tips:
- Include a link to your fundraising page in a social post and email to make it quick and easy for people to donate
- Send update emails on your progress throughout the challenge, eg: halfway to my km goal, or halfway to my fundraising goal. See the Resources page for some fun social tiles to share and remind people that you have commited to a month long challenge
- Remind your community that a small donation can make a big difference, (and it's tax deductible!)
- Ask your employer/workplace if they will engage in "matched giving" where they pledge to match your donation with an equal or predetermined amount

Visit our Live Fearless Challenge page to learn more, and to sign up!
https://www.livefearlesschallenge.com.au/

The IBD nurse is a nurse with specific training in IBD who can provide specialised information and guidance for people living with Crohn’s disease or ulcerative colitis. The IBD nurse can help you to understand your condition and how it is affecting you and can provide information, education, and guidance.

The IBD nurse can also help you identify any issues you are experiencing with your condition, help you to build a personalised care plan based around those issues, and in some cases assist you to access services or resources that may address those issues.

You can book an appointment via the link below.

https://crohnsandcolitis.org.au/support/ibd-telephone-helplines/ #:~:text=Just%20call%201800%20138%20029,press%20option%202%20for%20NurseLine