Cork woman: 24 years living with Inflammatory Bowel Disease... here's what I've learned

“LIVING with Crohn’s disease has made me realise that life is short, and anything can go wrong at any moment, so live life to the full when possible!”

That is the advice of Cork woman Victoria Spillane, who was diagnosed with the illness at 13.

The 37-year-old believes her illness has been responsible for several miscarriages, and it has had a huge impact on her life and career.

Victoria, from Cork city, now living in East Cork, is speaking about her health as part of an effort by Crohn’s and Colitis Ireland to raise awareness of inflammatory bowel disease (IBD) ahead of World IBD Day on May 19.

“My IBD journey all began with pain in my left knee and lower back,” she recalls, “before progressing to more severe symptoms of constant excruciating abdominal pain, lack of appetite, severe diarrhoea and weight loss, extreme fatigue and irritability, joint pain, and eye inflammation.

“This all took place 12 months in the lead-up to my diagnosis.”

Victoria adds of her health issues at such a young age: “I feel it made me a stronger and resilient person who had to mature quicker than others my age, and gave me the tools to be able to battle any situation thrown at me in life, whether IBD or non-IBD life events.

“I was always a glass half-full person and, even on ‘down days’, I ride them out and hope that the next day or week will be better.”

Victoria, who lives with her partner Mark, had a panproctocolectomy in 2011 - a serious operation that left her with a stoma and a bag she calls ‘Guiney’.

Before then, she says: “I had to give up playing basketball, which was tough as I loved it so much. Dealing with the ‘half-moon shaped face’ from so much steroid use I also found incredibly tough during my teen years, as comments would be made about my appearance.

“Any time I looked in the mirror when my face would have returned to a ‘normal’ size, I would still see it as being swollen.”

Victoria says that following her op in 2011: “People had questioned in the build-up to my first holiday abroad what I would wear while by the pool and there was never a doubt in my mind that I would continue as normal.

“I continued to wear a two-piece swimsuit with my ileostomy bag visible for the world to see.

“Guiney saved my life, is forever with me, and so should not, and would not, be hidden away in shame!”

Victoria enjoys reading, walking, basketball, music, and the odd game of pitch & putt, but admits Crohn’s disease impacted some areas of her life.

“I had to really re-think my career choices. I wanted to be a medic but with being ill it was not an option to both work in a hospital setting and be admitted so often, as there would have been no break from being in a hospital.

“I still wanted to help others so decided to go into social science and work in a social work/care capacity.

“However, after all my years studying, I needed to re-think this also as when the time came to have my large intestine removed, the work I was involved with care-wise was deemed too strenuous on my body. I had to start all over again, which was upsetting.”

But Victoria is a resilient person, and managed to secure work as a Research Support Officer with APC Microbiome Ireland at UCC.

“Doing a Master’s in Public Health and Epidemiology, which I managed to complete while still in recovery from surgery, has helped get me into the research work I do today,” she says. “To be able to work with a team which focuses on gut health and IBD is surreal, as it also gives me the opportunity to help others on their IBD journey.

“Sadly, I have also had several miscarriages. While the cause has never been determined, a question mark remains over whether they were related to issues due to IBD, for example, previous meds I was on, or inside bodily trauma due to the surgery.

“These were very traumatic times and living with Crohn’s disease has made me realise life is short, and anything can go wrong at any moment.”

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Ahead of World IBD Day, Crohn’s and Colitis Ireland launched a new Symptom Checker (www.crohnscolitis.ie/symptomchecker).

The tool forms part of its ‘Poo Taboo’ campaign which aims to lift the lid on some of the stigma around IBD symptoms and the importance of people not being too shy to get checked out.

IBD covers a number of conditions in which the digestive tract becomes inflamed, swollen and ulcerated - the two most common conditions being Crohn’s Disease and ulcerative colitis. It is thought at least 40,000 people are living with IBD in Ireland, with most being diagnosed between 15 and 35 years, and then later in life, between 50 and 70 years.

However, Crohn’s and Colitis Ireland believes that many more people remain undiagnosed.

While ulcerative colitis affects the large intestine only, Crohn’s disease can occur anywhere along the digestive tract, and the inflammation can be much deeper, even perforating the bowel.

Common symptoms include diarrhoea or loose stools, bleeding from the bottom, fever, fatigue, anaemia, weight loss, cramps and abdominal pain. With ulcerative colitis, there can also be a feeling of being unable to completely empty the bowel.

Consultant gastroenterologist, Prof. Barbara Ryan, says: “I have known from my own clinical practice for some time that too many people delay getting seen to. They may put off getting checked out and having their symptoms investigated, or sometimes IBD, particularly Crohn’s disease, can be difficult to diagnose.

“For others, the path to diagnosis is much smoother and quicker, once they start to undergo investigation.

“Thankfully, once the diagnosis is made, we now have an excellent and ever-expanding array of treatments available, and people can experience a rapid improvement in symptoms.”