People react in different ways to grief, but the day after the death of a close family member, Amy Dennis developed stomach cramps and diarrhoea.
Just a teenager at the time, her GP put it down to being bereaved, but the symptoms persisted and the bouts of diarrhoea became a recurring issue that played havoc with her life.
As time went on, and her situation didn’t improve, it was thought that she could have had an intolerance to gluten – the protein found in grains – but it wasn’t until she began to get “properly sick” that a thorough investigation was undertaken.
It was discovered that she had Crohn’s disease – a chronic and debilitating digestive condition with lifelong consequences. The condition can require the need for surgery, hospitalisation, immuno-suppressing treatments and higher risks for some forms of digestive cancers.
“At the start of 2021, during the second Covid lockdown, I began to lose extreme amounts of weight from both diarrhoea and vomiting,” says the now 23-year-old.
“I went from 84kg down to 48kg in under a year. I was hospitalised for an unrelated issue, but that is when I had more blood tests and a colonoscopy, which led to me being diagnosed with Crohn’s disease in December 2022.”
Once diagnosed, living well with this condition is possible, but it does come with a cost, as medication, new dietary requirements and other treatments add up.
Crohn’s disease and colitis, two types of inflammatory bowel disease (IBD), affect about 40,000 people in Ireland. Research published last month showed that 60 per cent of people living with IBD face “financial difficulty” as a result of their condition.
The report, launched by Crohn’s and Colitis Ireland, showed that patients spend an average of €3,252 annually on managing their condition including treatment and dietary needs, while 47 per cent have avoided seeking necessary medical care due to cost.
Figures showed 62 per cent reported that taking time off work due to their condition has negatively affected their financial situation “to some or a great extent”.
Costs associated with attending medical appointments also play a significant role. Some 85 per cent said that mileage and travel costs added to their financial burden, 83 per cent had issues with parking fees, 62 per cent with overnight stays for medical appointments, and 49 per cent cited childcare fees as taking a toll financially.
Dr Orlaith Kelly, consultant gastroenterologist at Connolly Hospital in Dublin, says Crohn’s disease can be diagnosed at any age, but commonly presents in people aged 15-35, with a second wave of diagnoses occurring at 50-60.
Treatment is not curative, but can control the disease, which can have very debilitating symptoms.
“Given the age profile of patients, IBD can often impact people when they are ordinarily at the height of their working lives or entering work life or parenthood,” says Dr Kelly.
She says that 60 per cent of people living with IBD face financial difficulty directly because of their condition, while almost half have avoided necessary medical care because of the cost.
“In a cost-of-living crisis, for some, often it becomes a choice between paying for school uniforms, a utility bill and maybe forgoing medication or missing an appointment to work to do so,” she says.
“And this has obvious impact on patients’ wellbeing and health down the track, possibly resulting in an emergency visit or more hospitalisation when the disease flares or is out of control.”
It would be good for us to be able to enrol in the long-term illness scheme, or at least lowering the cost of the drugs payment scheme for us
— Amy Dennis
Amy Kelly, chief operating officer at Crohn’s & Colitis Ireland, urges the Government to “listen to the needs of the community and to improve access to care in Ireland”.
“This includes including Crohn’s disease and ulcerative colitis in the chronic disease management programme and expanding medical card eligibility, ensuring equitable access to essential medical care,” she says.
“This inclusion would provide free, structured care, potentially reducing patients’ out-of-pocket healthcare expenses through fewer emergency room visits, hospital admissions and lower medication costs.”
According to Dr Orlaith Kelly, care for patients should cover access to more IBD physicians and multidisciplinary team members such as specialist nurses, psychologists and surgeons in a more timely and uniform manner across the country.
This also includes timely access to intestinal ultrasound, endoscopy and MRI scans when needed and to infusions and theatre slots.
“This requires joined-up thinking at national programme level, provision of adequate resources to assess current needs through accurate data capture and adequate resourcing of this area in hospital and national health budgets,” she says.
“The truth is this type of strategy will in fact save money along with countless improvements in quality of life for the patients by avoiding the long-term complications and [emergency department] visits, which inadequate care or lack of access can so often lead to.”
Dennis says this would be a welcome relief for herself and others with IBD.
“It would be good for us to be able to enrol in the long-term illness scheme, or at least lowering the cost of the drugs payment scheme for us,” she says.
“I shouldn’t have to choose between putting petrol in my car or getting the food and medication which is necessary to control my condition.”
