Crohn’s & Colitis Australia (CCA) https://crohnsandcolitis.org.au/ Empowering people living with Crohn's disease and ulcerative colitis Fri, 22 Mar 2024 04:04:56 +0000 en-AU hourly 1 https://wordpress.org/?v=6.4.3 https://crohnsandcolitis.org.au/wp-content/uploads/2022/03/cropped-Favicon-70-Copy-32x32.png Crohn’s & Colitis Australia (CCA) https://crohnsandcolitis.org.au/ 32 32 Covid-19 vaccine advice https://crohnsandcolitis.org.au/2024/03/22/covid-19-vaccine-advice/ https://crohnsandcolitis.org.au/2024/03/22/covid-19-vaccine-advice/#respond Fri, 22 Mar 2024 04:04:55 +0000 https://crohnsandcolitis.org.au/?p=13814 The Australian Government has accepted the latest advice from the Australian Technical Advisory Group on Immunisation (ATAGI) on the National COVID-19 Vaccine Program for 2024. Adults 65 years and over, or aged 18-64 who are severely immunocompromised, are eligible to receive a booster dose every 6 months. 

The post Covid-19 vaccine advice appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Covid-19 vaccine advice

The Australian Government has accepted the latest advice from the Australian Technical Advisory Group on Immunisation (ATAGI) on the National COVID-19 Vaccine Program for 2024. Adults 65 years and over, or aged 18-64 who are severely immunocompromised, are eligible to receive a booster dose every 6 months. 

As with all vaccinations, people are encouraged to discuss the vaccine options available to them with their health practitioner.

See here for more info: COVID-19 2024 vaccine advice | Health Portfolio Ministers | Australian Government Department of Health and Aged Care

The post Covid-19 vaccine advice appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/covid-19-vaccine-advice/feed/ 0
CCA & AAPi partnership https://crohnsandcolitis.org.au/2024/03/22/cca-aapi-partnership/ https://crohnsandcolitis.org.au/2024/03/22/cca-aapi-partnership/#respond Fri, 22 Mar 2024 03:41:22 +0000 https://crohnsandcolitis.org.au/?p=13808 Crohn’s and Colitis Australia have partnered with The Australian Association of Psychologists (AAPi) on educational resources for psychologists to help them support patients with IBD.

The post CCA & AAPi partnership appeared first on Crohn’s & Colitis Australia (CCA).

]]>
CCA & AAPi partnership

Crohn’s and Colitis Australia recognises the importance of multidisciplinary care in supporting people living with Inflammatory Bowel Disease (IBD). 

We have partnered with The Australian Association of Psychologists (AAPi) on educational resources for psychologists to help them support patients with IBD.

We will be sharing videos about psychology in IBD from Associate Professor Simon Knowles on our social media platforms at a later date.

The post CCA & AAPi partnership appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/cca-aapi-partnership/feed/ 0
Thank you to John Brennan https://crohnsandcolitis.org.au/2024/03/22/thank-you-to-john-brennan/ https://crohnsandcolitis.org.au/2024/03/22/thank-you-to-john-brennan/#respond Fri, 22 Mar 2024 01:10:31 +0000 https://crohnsandcolitis.org.au/?p=13803 John Brennan has served on the Finance Audit and Risk Committee at CCA since July 2020. For the last three years and seven months he has made a significant contribution to CCA through his work in the risk management space. He has been a solid supporter of the organisation, particularly through the pandemic.  Thanks so much John. We thank you for your assistance and we wish you well with future endeavours.

The post Thank you to John Brennan appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Thank you to John Brennan

John Brennan has served on the Finance Audit and Risk Committee at CCA since July 2020. For the last three years and seven months he has made a significant contribution to CCA through his work in the risk management space. He has been a solid supporter of the organisation, particularly through the pandemic. 

Thanks so much John. We thank you for your assistance and we wish you well with future endeavours.

The post Thank you to John Brennan appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/thank-you-to-john-brennan/feed/ 0
Key findings from IBD and diet research https://crohnsandcolitis.org.au/2024/03/22/key-findings-from-ibd-and-diet-research/ https://crohnsandcolitis.org.au/2024/03/22/key-findings-from-ibd-and-diet-research/#respond Fri, 22 Mar 2024 01:04:58 +0000 https://crohnsandcolitis.org.au/?p=13800 In 2023, University of Wollongong PhD student Chiara Miglioretto and her supervisors Prof. Kelly Lambert and Prof. Eleanor Beck, completed research into the dietary information needs of people living with IBD, with help from CCA for participants’ recruitment. The findings are now being published and key insights are informing the development of a patient-centred communication aid tool.

The post Key findings from IBD and diet research appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Key findings from IBD and diet research

In 2023, University of Wollongong PhD student Chiara Miglioretto and her supervisors Prof. Kelly Lambert and Prof. Eleanor Beck, completed research into the dietary information needs of people living with IBD, with help from CCA for participants’ recruitment. The findings are now being published and key insights are informing the development of a patient-centred communication aid tool

Key learnings from the study were:

1. The journey of IBD can be lonely, cyclical and fraught with uncertainty.

2. Manipulating the diet provides a sense of control, although it may sacrifice quality of life.

3. Questions about food and eating vary according to the stage of a person’s IBD.

4. Lack of nutrition guidance at time of diagnosis partly influences information seeking and the diet changes made.

The findings from this research support calls in the Australian IBD standards for care that is holistic and includes routine referral to credentialed dietitians for dietary guidance.

The study can be accessed here.

The post Key findings from IBD and diet research appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/key-findings-from-ibd-and-diet-research/feed/ 0
Ustekinumab listed on PBS https://crohnsandcolitis.org.au/2024/03/22/ustekinumab-listed-on-pbs/ https://crohnsandcolitis.org.au/2024/03/22/ustekinumab-listed-on-pbs/#respond Fri, 22 Mar 2024 00:54:04 +0000 https://crohnsandcolitis.org.au/?p=13797 Ustekinumab is now listed on the PBS for the treatment of complex refractory fistulising Crohn’s disease (fCD).

The post Ustekinumab listed on PBS appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Ustekinumab listed on PBS

Ustekinumab is now listed on the PBS for the treatment of complex refractory fistulising Crohn’s disease (fCD). The medication can be dispensed at a government subsidised price for eligible people. Anyone thinking about changing medication should speak to their gastroenterologist. 

Visit here for more information and resources about Ustekinumab.

The post Ustekinumab listed on PBS appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/ustekinumab-listed-on-pbs/feed/ 0
2024 Scholarship awarded https://crohnsandcolitis.org.au/2024/03/22/2024-scholarship-awarded/ https://crohnsandcolitis.org.au/2024/03/22/2024-scholarship-awarded/#respond Fri, 22 Mar 2024 00:49:14 +0000 https://crohnsandcolitis.org.au/?p=13795 We are thrilled to announce that the CCA IBD PhD Scholarship of $96,000 over three years has been awarded to Dr Richard Fernandes, University of Queensland. Dr Fernandes is a gastroenterologist who is undertaking the project  ‘Improving our understanding of post-operative Crohn’s disease recurrence’

The post 2024 Scholarship awarded appeared first on Crohn’s & Colitis Australia (CCA).

]]>
2024 Scholarship awarded

We are thrilled to announce that the CCA IBD PhD Scholarship of $96,000 over three years has been awarded to Dr Richard Fernandes, University of Queensland. Dr Fernandes is a gastroenterologist who is undertaking the project  ‘Improving our understanding of post-operative Crohn’s disease recurrence’

Many patients with Crohn’s disease require surgical resection of diseased bowel. However, surgery is not a cure, with high recurrence rates after surgery. This remains poorly understood; however, some factors associated with risk of recurrence include surgical technique, immune signalling, and the bacteria living in the gut (microbiome). This study aims to evaluate the impact of surgical technique on disease recurrence, methods for detecting recurrence, and changes in immune signalling and the microbiome following resection.’

You can see CCA’s previous scholarship winners here.

The post 2024 Scholarship awarded appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/2024-scholarship-awarded/feed/ 0
“This disease has changed my life in ways I would never have anticipated” https://crohnsandcolitis.org.au/2024/03/22/this-disease-has-changed-my-life-in-ways-i-would-never-have-anticipated/ https://crohnsandcolitis.org.au/2024/03/22/this-disease-has-changed-my-life-in-ways-i-would-never-have-anticipated/#respond Thu, 21 Mar 2024 23:56:23 +0000 https://crohnsandcolitis.org.au/?p=13786 "This disease has impacted all aspects of my life and continues to do so today. It is often misunderstood and overlooked - I hope that my story helps bring just that little bit more visibility for others out there who are also experiencing a similar story to myself and suffering from this invisible disease."

The post “This disease has changed my life in ways I would never have anticipated” appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Getting a call from your doctor on a Sunday can never mean good news. That was how I was informed I had inflammatory bowel disease (IBD) It started back in October 22. I knew things weren’t well and I started having issues in the bathroom. I saw my doctor and we began the routine tests.

Following the results showing I had IBD we completed further tests and began the standard medication, steroids, to try and relieve my symptoms. Further investigation revealed I had Crohn’s disease. I had inflamed tissue in my large intestine. Routine treatment and medications did not do much to resolve my symptoms, rather my condition began worsening. My specialist recommended I try another form of treatment called sulfasalazine (DMARD).

However, my body likes to be different. Following a fortnight of isolation, due to Covid-19, I started to develop a rash. I woke up the next morning with a temperature of 40 degrees and the beginning of a spectacular, rare allergic reaction. I was held in hospital at the RAH for 12 days. Whilst in hospital and after various investigations and being treated by four teams of doctors from different disciplines, it was found that I was experiencing DRESS- Drug reaction with eosinophilia and systemic symptoms. This resulted in me looking like Violet from Charlie and the Chocolate Factory and closely resembling the red Teletubby. I barely remember half my time in hospital as I was delirious.

Stephen while in hospital.

Once I was out of hospital, I looked as though I had been badly sunburnt and could not work for a further two months whilst I recovered yet was still experiencing my Crohn’s symptoms. Considering that I was not responding to medication or was highly allergic to it i was then placed in a medical trial.

This gave me access to a biologic medication (or a placebo), which would help me control my symptoms. I then began the routine of every 4 weeks going to hospital for a 2-hour infusion. This was eventually replaced with self-administering 3 injections. With this my symptoms subsided, and my results look positive. Until they didn’t at the end of 2022 my symptoms rapidly increased and I found myself enjoying a hospital visit once again. A call was then made to place me on a different biologic medication that was known to be effective against Crohn’s diseae. It worked and, now one year on, my 8-weekly infusion of Remicade, aka infliximab, assist me with controlling my disease. I also take daily medication which suppresses my immune system.

For each person with Crohn’s disease the symptoms and experience can vary. For myself, I had to visit the bathroom regularly and urgently. At its worst, I averaged 10 visits a day and was passing blood on each occasion. My mornings consisted of being doubled over in pain and I was bloated from the moment I woke up. I knew the location of every accessible toilet on my 20 minute drive to work, as I would regularly stop at least once and sometimes even twice during my commute. I planned my life around being able to access the bathroom. I hated going out and socialising and was often embarrassed and anxious that I would always have to use the bathroom and worried what people might think. I feared public transport andm since my diagnosis, I am yet to step on an airplane. I was mentally prepared the have an operation to remove my bowel, even if I was likely to have to permanently use a colostomy bag.

Currently, my condition is being managed however everything is linked heavily with stress management. If my body experiences too much stress my symptoms return. If I am stressed at work, if I push my body too hard with exercise, or if I get sick, it can cause a flare. I also have to manage what I eat. I can’t eat spicy foods, drink alcohol, or consume protein powders, oily foods and anything too processed, as these can also cause issues. This disease has changed my life in ways I would never have anticipated. I went from working as a personal trainer, and considering competing in bodybuilding or powerlifting competitions, to being immunocompromised and having to be considerate of the stresses that I place on my body.

I still train, but at a quarter of the amount I used to. I have a card that allows me to access bathrooms, and I automatically locate the bathroom when I enter a building. I also ensure that I know where proximal toilet stops are on any given road trip. This disease has impacted all aspects of my life and continues to do so today. It is often misunderstood and overlooked, but I hope that my story helps bring just that little bit more visibility for others who are experiencing a similar story to myself, and are suffering from this invisible disease.

Stephen and his sister, Matilda.

To contribute to Matilda’s mycause campaign, raising funds on behalf of CCA, visit here

To share your story, click here.

The post “This disease has changed my life in ways I would never have anticipated” appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/03/22/this-disease-has-changed-my-life-in-ways-i-would-never-have-anticipated/feed/ 0
Amaretto Sour mocktail https://crohnsandcolitis.org.au/2024/01/16/amaretto-sour-mocktail/ https://crohnsandcolitis.org.au/2024/01/16/amaretto-sour-mocktail/#respond Tue, 16 Jan 2024 04:27:37 +0000 https://crohnsandcolitis.org.au/?p=13523 Amaretto Sour mocktail Ingredients As always: if any of these ingredients are flare foods for you, please omit them or…

The post Amaretto Sour mocktail appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Amaretto Sour mocktail

Ingredients

  • Juice and zest of ½ a lemon 
  • ½ cup of peach juice  
  • ¼ cup of aquafaba (chickpea water)  
  • ¼ cup of cherry juice 
  • 2 teaspoons of almond extract 
  • 5 ice cubes 
  • Cherries and lemon juice to serve: 

As always: if any of these ingredients are flare foods for you, please omit them or replace them with an alternative item. 

Prep Time

3-5 minutes  

Cooking Time

30-seconds to 1 minute

Method

  1. Mix together in a cocktail shaker for 10-15 seconds. 
  2. Serve in a cold glass with cherries and a lemon slice on top. 

The post Amaretto Sour mocktail appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/01/16/amaretto-sour-mocktail/feed/ 0
Have your new years resolutions… slipped? Or never got off the ground? https://crohnsandcolitis.org.au/2024/01/16/have-your-new-years-resolutions-slipped-or-never-got-off-the-ground/ https://crohnsandcolitis.org.au/2024/01/16/have-your-new-years-resolutions-slipped-or-never-got-off-the-ground/#respond Tue, 16 Jan 2024 04:18:19 +0000 https://crohnsandcolitis.org.au/?p=13521 By Gemma Reeves, APD BND BSc (FoodScNut) Health Coach As we gaze at the fireworks in the sky, dream about…

The post Have your new years resolutions… slipped? Or never got off the ground? appeared first on Crohn’s & Colitis Australia (CCA).

]]>
By Gemma Reeves, APD BND BSc (FoodScNut) Health Coach

As we gaze at the fireworks in the sky, dream about the year that was and the year to come, make a resolution (or twelve!), it can bring a sense of hope for the coming year. We hope the calendar will tick over to a fresh chapter and we will magically make better choices.

While this is poetic and can create a sense of drive in us momentarily, some goals may be so big that by the time February rolls round, resolve and habits are slipping. Perhaps changes were never made.

If you can relate to this, know it’s common and try breaking your goal down into small behaviours. We need these small changes to underpin our regular habits, to edge us towards our medium and long-term goals.

Some steps to try:

  • Write down your big goals for 2024 then break them into medium-term goals (6 months, 3 months). This can be challenging and take some time.
  • Break down your medium-term goals into SMART (specific, measurable, attainable, realistic/relevant, time-bound) behaviours.

e.g. I will walk for 20 minutes, two days per week on Mon and Thurs, straight after work with my work friend, starting on Monday 5th Feb 2024. I will track my progress via my fitness app. Furthermore, on Mondays only, I will swap my afternoon (slump) chocolate for some peanut butter on my favourite crackers, commencing Monday 12th Feb 2024.

  • Choose only 1 of the SMART behaviours and consider your confidence to execute them. If you are below an 8/10 for confidence, rework your SMART behaviour so they become easier and you feel more confident about execution.
  • Life will always get in the way. Write down your barriers and try some troubleshooting. If things just feel too hard rework your chosen SMART behaviour to be different, lower in frequency, duration or intensity. You may need to have a conversation with someone to engage support so the SMART behaviour can happen.

e.g. Chat to your spouse about freeing up time for the behaviour.

  • If you are still struggling, think about why it is you want to achieve your goal e.g. So I can a better parent via being physically present with my children, playing some backyard soccer with them on the weekends. Dig deep as this is where the motivation magic can happen! Write it down and display as a reminder.
  • Once you have nailed a single SMART behaviour in your routine, add in another small SMART behaviour. Remember, baby steps are the best approach for behaviour change.
  • Still need some support? Most states have free telehealth behaviour change support services.

The post Have your new years resolutions… slipped? Or never got off the ground? appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2024/01/16/have-your-new-years-resolutions-slipped-or-never-got-off-the-ground/feed/ 0
Inflammatory bowel disease associated with atopic dermatitis (eczema) https://crohnsandcolitis.org.au/2023/12/06/inflammatory-bowel-disease-associated-with-atopic-dermatitis-eczema/ https://crohnsandcolitis.org.au/2023/12/06/inflammatory-bowel-disease-associated-with-atopic-dermatitis-eczema/#respond Wed, 06 Dec 2023 00:47:36 +0000 https://crohnsandcolitis.org.au/?p=13393 Inflammatory bowel disease (IBD) has no single cause, with genetics, immune system dysfunction and the gut microbiome all implicated. The…

The post Inflammatory bowel disease associated with atopic dermatitis (eczema) appeared first on Crohn’s & Colitis Australia (CCA).

]]>
Inflammatory bowel disease (IBD) has no single cause, with genetics, immune system dysfunction and the gut microbiome all implicated. The condition causes inflammation where the immune system attacks healthy tissues. IBD is also well known to be associated with skin conditions affecting the entire body [1]. One of such associated skin conditions is atopic dermatitis (AD) also known as eczema. AD is a long-lasting common skin condition that causes inflammation, redness, and itchiness of the skin. The cause of AD is complex with multiple factors including genetic risk, immune system dysfunction and environmental exposures [2].   

Recently published results of a longitudinal study, conducted over twenty years and including hundreds of thousands of participants, suggest a close association between AD and IBD. The study found that 44% of children and 34% of adults with AD have an increased probability of developing IBD compared to people without eczema [3]. The probability is influenced by AD acuteness, age, and subtype of IBD. Treatment of the skin diseases associated with IBD involves managing IBD itself, including biological medications, such as Stelara or immune altering medications such as JAK inhibitors [2, 3].  

Any information provided in this article is general in nature and not medical advice. If you feel like you have the skin condition mentioned above, please see a doctor for diagnosis and treatment.   

To read more about other conditions associated with IBD please visit our website:  

References

[1] Antonelli E, Bassotti G, Tramontana M, Hansel K, Stingeni L, Ardizzone S, Genovese G, Marzano AV, Maconi G. Dermatological Manifestations in Inflammatory Bowel Diseases. J Clin Med. 2021 Jan 19;10(2):364. doi: 10.3390/jcm10020364. PMID: 33477990; PMCID: PMC7835974.  

[2] Dermatitis. Atopic dermatitis | DermNet [Internet]. [cited 2023 Oct 22]. Available from: https://dermnetnz.org/cme/dermatitis/atopic-dermatitis 

[3] Chiesa Fuxench ZC, Wan J, Wang S, Syed MN, Shin DB, Abuabara K, Gelfand JM. Risk of Inflammatory Bowel Disease in Patients With Atopic Dermatitis. JAMA Dermatol. 2023 Oct 1;159(10):1085-1092. doi: 10.1001/jamadermatol.2023.2875. PMID: 37647058; PMCID: PMC10469290. 

[4] Care AGD of H and A. Pharmaceutical Benefits Scheme (PBS) | Ustekinumab [Internet]. Australian Government Department of Health and Aged Care; [cited 2023 Oct 22]. Available from: https://www.pbs.gov.au/medicine/item/10767Q-10774C-11164N-11178H-11182M-12662K-12664M-12669T-13255P-13261Y-13272M-13273N-9304Q-9305R  

[5] https://www.tga.gov.au/news/safety-alerts/new-safety-warning-medicines-used-arthritis-and-other-inflammatory-conditions  

The post Inflammatory bowel disease associated with atopic dermatitis (eczema) appeared first on Crohn’s & Colitis Australia (CCA).

]]>
https://crohnsandcolitis.org.au/2023/12/06/inflammatory-bowel-disease-associated-with-atopic-dermatitis-eczema/feed/ 0