Despite living with chronic and unpredictable pain, 25 year-old Laura Minns is positive about her life, managing her condition and future planning.
Health Agenda magazine
When Laura Minns was 15 she started experiencing stomach pains and began losing too much weight, and her doctor didn’t waste any time sending her to see a gastroenterologist.
Laura’s older brother had recently been diagnosed with an inflammatory bowel disease (IBD) called Crohn’s disease and the signs were familiar.
“I think the diagnosis process was expedited,” says Minns. “[Usually] diagnosis can take a while because you might go through, ‘do you have intolerances to this and that?’”
Crohn’s disease is a lifelong gastrointestinal disorder and the symptoms are usually unpredictable. The main goals of treatment are to alleviate pain and increase quality of life. Common symptoms are abdominal pain, diarrhoea, constipation and weight loss.
Almost 75,000 Australians have Crohn’s disease or its sister IBD condition ulcerative colitis, with this number projected to increase to 100,000 by 2022, according to a PricewaterhouseCoopers Australia report. Both IBD conditions originate from an inflamed colon and rectum.
According to Bowel Cancer Australia, ulcerative colitis is inflammation “usually found just in the inner lining of the gut” which only affects the colon and rectum. In Crohn’s disease, however, “the inflammation can spread through the whole wall of the gut” and can affect any part of the gut, also known as the gastrointestinal tract.
Though there is little concrete scientific knowledge of the causes of IBD, some theories include genetics and immune attacks after an infection. Interestingly, according to Crohn’s and Colitis Australia, smokers are twice as likely to develop Crohn’s disease, and patients who quit smoking have a 65% lower risk of a flare-up.
Living with a chronic illness
At 25, Minns now understands that every case of Crohn’s disease presents in a unique way. “Everyone’s journey is quite different,” she explains. “My brother, for instance, has really acute attacks of Crohn’s disease and gets quite sick, then has long periods of being fine, whereas my Crohn’s grumbles along and is ongoing. Then there are times where it gets worse and I feel really unwell.”
As well as the gut side effects, there are lesser-known complications. After experiencing severe ankle pain, Minns was surprised to be diagnosed with arthritis.
“I ended up in the emergency room thinking I had broken my ankle, but I hadn’t. I had associated arthritis that meant the lining of my [ankle] joint was inflamed,” she says.
It’s frustrating to Minns that the disease affects her in such a non-visible, silent way. “I don’t look like someone who’s sick,” she says. “The problem with Crohn’s is that you don’t absorb many nutrients when you’re unwell. You lose weight because of that, but you also don’t get a lot of nutrition from your food so you become exhausted and get these waves of pain. I have days where I just want to go home and curl up.”
Managing the pain
After nearly 10 years on largely the same medication, last year Minns told her gastroenterologist that the pain had become constant. The specialist decided it was time to change treatment and Minns was put on a new medication – one largely unaffordable when she was first diagnosed but since added to the Pharmaceutical Benefits Scheme (when the government subsidises some of the cost).
Minns was flooded with hope when the new course of drugs was prescribed – and it worked. “I thought, ‘Oh my God, I remember what it feels like not to be sick. This is amazing!’”
The importance of mental health
Minns unfortunately developed a resistance to the new treatment but was switched to a similar drug that is demonstrating the same positive results. The relief that comes with addressing her pain is clear – but it’s not the physical symptoms she struggles with the most.
“I find the emotional part the hardest. Being frustrated that you’re sick and knowing, particularly before this new treatment, that this is just how it’s going to be.”
Minns says that while a change of diet hasn’t relieved her symptoms, she adjusts her lifestyle to prevent situations where she might have to manage an unexpected flare-up.
“I love bushwalking, but with Crohn’s you don’t really want to set out on a 6-hour hike because you don’t know what the day is going to bring.”
She’s also acutely aware of the link between her own mental wellbeing, stress levels and Crohn’s attacks. “I know when I’m stressed, particularly at work or emotionally, it brings on Crohn’s the most.”
Minns is positive about what the future holds for her and fellow Crohn’s sufferers when it comes to emerging treatment options and she manages to maintain perspective about what’s important.
“Having a chronic illness… you don’t stress out about stuff that is out of your control because there’s not really anything you can do about it. I try not to let things get to me. I focus on being well.”
She’s also recently come to the realisation that sharing her diagnosis is key to both awareness of the disease and getting the support she needs. “I think people with Crohn’s disease get really good at hiding it and that seems silly. You should be able to be honest about it,” she says.
She believes there are possibly many people showing symptoms for Crohn’s but failing to get treatment in the hope that the problems will go away.
“If you think something is not quite right, trust your instincts and talk to your doctor,” she advises. “Life is too short to be sick all the time. If it’s within your power to make things better, find doctors who can help you.”
For more information on Crohn’s disease and ulcerative colitis, including support groups, go to crohnsandcolitis.com.au
Photography: Chris Elfes
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