Clean Toilets Matter To Aussies

Crohn’s & Colitis Australia (CCA) is championing World Toilet Day on 19 November by reminding the community that accessibility to clean toilets is not just a third world problem.

Australia might be aflush with toilets, with 19,000 public facilities across the nation, but there are many people who have been denied the service when they need it most. Occasions such as these can be incredibly distressing for people with Crohn’s disease or ulcerative colitis, who can experience the urgent need to go to the toilet anywhere and at any time.

By 2022 it is estimated that more than 100,000 Australians will be living with Crohn’s or colitis (collectively known as inflammatory bowel disease), so it’s important that they have one less reason to feel anxious when they leave the house. The average person goes to the toilet between 4 and 10 times per day, but people with active inflammatory bowel disease have reported that they may need to go to the toilet urgently 20 times or more a day, making these illnesses incredibly challenging to live with.

World Toilet Day (WTD) typically highlights the poor sanitation facilities in third-world countries, which is certainly a major global problem. The issues in Australia, (although different), have been overlooked but they can’t be ignored. No matter how much a person with Crohn’s or colitis plans ahead, there will be situations where they will depend on others for access to decent toilet facilities, particularly when they are in urgent need. Denying them access to a clean toilet can leave them feeling helpless, anxious, in pain and embarrassed, particularly if this leads to having an accident in a public place. It can be incredibly traumatising.

Another barrier people with Crohn’s or colitis face is that the disease is an invisible illness that not many Australians are aware of or talk about.

“At the queue to a handicapped toilet I quietly asked if I may go next as I have a colostomy bag. They looked at me as if this was the first time they had ever heard of one. A lovely lady in a wheelchair came up behind me and they instantly gushed with apologies and said, ‘oh we are so sorry, you can obviously go next’. I smiled at the lady in the wheelchair and said, ‘that’s the problem with having an invisible illness, my colostomy bag is close to exploding but no one would know it until it does’.

“The young lady in the wheelchair said, ‘I really feel for you as I get no strange looks or abuse using a handicapped toilet, and yet I am guessing you would come up against this often’. She let me go first and I heard her say to the young girls who were giving me dirty looks, ‘not all disabilities are visible girls, and it would be a good idea to remember that in the future’. Her kindness, compassion and support really meant a lot.” Tracey Murrin, CCA Ambassador

In light of this issue, CCA provides to its members with the ‘Can’t Wait Card’ which allows immediate access to a toilet to cardholders when shown to a business affiliated with the program. CCA has an open invitation for businesses to show their support and empathy for people living with Crohn’s and colitis by signing up to this program.

People with Crohn’s or colitis often depend on public facilities when travelling but in many cases these toilets fail to meet basic standards. COVID –19 has brought this issue to the forefront and we are now starting to see some municipalities across Australia offering hand sanitizer in public bathroom facilities, which is a small step in the right direction for the entire community.

Between 12th and 26th November CCA will be driving the conversation on accessibility to toilets for people with inflammatory bowel disease, as well as engaging with the community to find out their ‘go to’ best toilet spots across Australia and sharing some #loowithaview photos and fun toilet trivia.

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For media enquiries, contact Stacey James on 0490 672 900. Spokespeople available on request.

Sleep & IBD disease activity

You may notice that as stress increases in your life, so does your disease activity, or vice-versa: an increase in disease activity can lead to more stress.

By Leslie Ann Berg, MSPH 

We’ve found that in order to make actionable, lasting behavioral change, knowing the scientific explanation for how and why something is occurring can be a potent stimulus for action. So, let’s dig into the research.

Following strong anecdotal evidence in IBD patients, scientists began conducting research to see if there was actually an association between psychological stress levels and IBD disease activity. Studies based on symptom reporting revealed that mood disorders (namely depression and anxiety) can lead to increased inflammation and a heightened risk for IBD, as well as worsening disease activity in those who already have the disease.

While the brain can affect the gut, scientists have also uncovered ways that the gut affects the brain. Researchers have identified gut-brain signaling that proves inflammation in the intestines alters brain function, and in turn, negatively influences behavior – disrupting circadian rhythm, uncovering mood disorders, and altering appetite. Studies also show that psychological symptoms and IBD symptoms go hand in hand – as one increases in severity, so does the other.

It’s evident that not only can depression and other mood/behavior disorders lead to an increase in IBD disease activity, but also the opposite is true – IBD can lead to an increase in mood disorder symptoms. But how? The mechanism is through the gut-brain axis. The gut-brain axis describes the bidirectional relationship between the gut and the brain – the two organs communicate constantly with each other, sharing neurological, hormonal, and immune signaling. This relationship is strong and very real and explains why gut disorders affect the brain (as well as brain-related functions like mood, appetite, sleep, and behavior) and why things going on in the brain can affect the gut. If you’re looking to get your IBD under control and into long-term remission, one of the most helpful tactics is to manage your psychological stress. Managing your psychological stress means – in a very direct way – managing your IBD.

But how do I do this, you might ask? Because, as most of us know, managing stress isn’t so easy.

2020 review looked at studies investigating the strong link between psychological stress and IBD and concluded that a holistic approach to managing IBD is vital for patients to keep their psychological stress in check. Researchers who conducted the review study recommended implementing lifestyle interventions focusing on three main areas:

  1. Avoiding sleep deprivation
  2. Optimizing nutrition
  3. Monitoring and managing mood disorders

We couldn’t agree more. Modifying your lifestyle to improve your disease is the best way to encourage long term remission. While optimizing nutrition and managing your existing psychological health are important points and areas we’ll spend a lot of time talking about on this site, sleep is an under-addressed issue that we think needs a lot more attention. In fact, a study published this year in Current Gastroenterology Reports reviewed what we know about sleep in the IBD adult population and concluded that poor sleep is an unrecognized but incredibly important “extra-intestinal manifestation” of IBD. A study presented at Digestive Disease Week 2020 found that within the first 6 months of diagnosis, approximately 26% of IBD patients developed “new onset fatigue”, and fatigue was strongly linked to a prior diagnosis of depression, anxiety, and sleep disorders. Additional studies have found the following relationships between IBD and sleep:

The relationship between IBD and sleep is bidirectional – sleep impacts disease activity and disease activity impacts sleep – so coming up with strategies to improve sleep quality and realign the circadian rhythm is paramount for achieving psychological health and long-term remission.

TAKE ACTION! As you work to manage psychological stress in your daily life, make sleep a #1 priority. Let nothing (in your power, of course) get between you and a good night’s sleep. To help get you there, we recommend the following:

Lastly, remind yourself that not every night will be a good night’s sleep, especially if you’re experiencing a flare-up. But the more you implement the above steps day in and day out, the more likely you are to get good sleep most nights, which will improve your psychological, immune and gut health, and have a positive impact on your IBD.

Read Sleep & IBD Disease Activity.