May is Crohn’s and Colitis Awareness Month, with people living with the conditions urged to share their experiences and reach out for support
By 2022, it’s expected that more than 100,000 people will be living with Crohn’s disease and ulcerative colitis in Australia, according to Crohn’s & Colitis Australia (CCA).
As the rate of these inflammatory bowel diseases (IBD) continue to rise, CCA is urging people to share what it’s like to live with these life-long illnesses as part of Crohn’s and Colitis Awareness Month this May.
Known as “invisible illnesses”, a person may look completely well on the outside, but can be suffering from abdominal pain, cramping, bleeding, diarrhoea, inability to eat, or severe urgency to find a toilet.
These diseases affect every aspect of a person’s life, such as career or study plans or choices about when to start a family. For every person diagnosed, not only is their life changed forever, but so too are the lives of their family and friends, said CCA.
Leanne Raven, Chief Executive of CCA, the peak support body for people living with Crohn’s disease and ulcerative colitis, is encouraging people with inflammatory bowel disease to reach out for support and share their experiences, particularly during Crohn’s and Colitis Awareness Month.
“Too often, people with an inflammatory bowel disease won’t share their problems or experiences with others or ask for help when they need it because of the stigma surrounding the diseases.
“Many well-known diseases are understood with just a single word, but most Australians are still not familiar with the terms inflammatory bowel disease, Crohn’s disease or ulcerative colitis. The burden of explaining these diseases repeatedly to people who may not understand should be a problem of the past,” she said.
Sydneysider Albert Santos has been affected by Crohn’s since around August 2010.
“It’s been over a decade now, living with it and it’s affected my life in many different ways,” he told AJP.
“The fact that I had to stop and start my academic pursuits, my career progression and it’s gotten to a point where everything is in out of whack for me with both, which is really sad and disappointing but that’s just life.
“Constant flareups made it really too difficult to manage going into classes, exams, lectures and having these major flareups. Pain, gastro issues, IBD symptoms, even arthritis… There were times where it was incredibly bad.”
Thankfully Mr Santos’ condition recently went into remission, although he still deals with some minor symptoms and there are ongoing changes he has to manage.
“One of the constantly ongoing things is that I have a perianal fistula and that affects how I go about day to day, I now have a colostomy that affects my day to day, I have prolonged steroid use that’s affected my immune system. So there’s a lot going on,” he said.
Pain, gastro issues, IBD symptoms, even arthritis… There were times where it was incredibly bad.
One way pharmacists can directly support people with Crohn’s and colitis is to aid them through the medicines ordering process, said Mr Santos.
“One of the most difficult things I found, especially early on, is that a lot of the medications have to be ordered in. Guiding patients through the process very early and ongoing – for example, letting them know, if you’re going to need a month’s supply you have to give us a couple of days’ notice,” he said.
“A lot of things have to pre-approved by the government to be delivered to pharmacies, the one I’m on right now – Stelara – they can’t keep that on-site, they have to order it every time.
“So for a lot of biologicals, a lot of other things not just Stelara but Humira and Remicade, there is quite a long process.
“I think it’s also building that rapport between pharmacist, GP and specialist to ensure all three are on the same page for what’s needed for their patients with Crohn’s, because sometimes the specialist might recommend something that’s on a clinical trial which is entirely other process for pharmacies to get in,” he said.
He also asked pharmacists for empathy and understanding, as there is the potential for stigma to show in various ways.
“Even though these medications are often very expensive out of pocket and Medicare covers quite a large part of the gap, don’t let that reflect back onto the patient when they come into the pharmacy,” said Mr Santos.
“Even though by law it has to be printed on the packaging – and we’re incredibly grateful here in Australia we don’t have a system where we don’t have to pay for these ridiculous prices – as long as it’s not reinforced in attitudes of the pharmacist… there’s a need for empathy there.
“Another thing is that people with Crohn’s and colitis often need to use the bathroom, so some of us will have cards that we are supplied by CCA, some of us don’t. But if someone says, when they’re waiting for medicines, can I use the bathroom? It’s important to let them use it in that instance because it is that important.”
Meanwhile CCA is encouraging people living with an inflammatory bowel disease to build a strong support network of health professionals, friends, family and work mates around them, to talk to when some extra support is needed.
“We hope that the more people living with these illnesses feel supported to share their experiences, the greater awareness we can raise,” Ms Raven said.
To learn more or to donate to support CCA’s outreach programs, visit https://www.crohnsandcolitis.com.au/awareness-month-2021/ or call 1800 138 029