Cork Views: 'Having Crohn’s has certainly changed the way I live my life'

At the time of my diagnosis, I had been experiencing frequent diarrhoea. I will say that living with Crohn’s now is much different than when I was first diagnosed.

Back in 1993, many healthcare professionals knew very little about it and I personally had never heard of it. Now, when I tell people I have Crohn’s, everyone knows what it is. Treatment options have also improved.

Having Crohn’s has certainly changed the way I live my life. While my bowels are relatively under control and predictable, I will still plan journeys and know where toilets are along the route.

I’m often late for meetings as I will have to use the toilet ‘one last time’ before leaving or to stop along the way.

Due to Crohn’s-induced spondylitis, I’ve occasionally been very physically limited due to inflammation in my joints, particularly in my back and hips but, more recently, in my hands and knees. I also have had to contend with Crohn’s-induced osteoporosis and being diagnosed with prostate cancer in 2021.

I’ve done some endurance sports such as marathons and triathlons, so I do have to eat differently than regular athletes. When taking on extra carbs, I can’t go for the preferred options of extra fruit and vegetables so I have to go for the ‘unhealthy’ options of breads and pastas, which ultimately make me nauseous and bloated.

I think completing a full distance Ironman triathlon in 2023 was my greatest physical and mental achievement. Planning food around training, as well as managing inflamed joints and irregular bowel habits, brought extra challenges beyond just completing the triathlon.

It’s important for me to be an example to my children of what can be achieved, especially for my daughter, who is also on biologics for ankylosing spondylitis.

Having Crohn’s doesn’t necessarily mean that you can’t do the things that you want to do, it sometimes just means that you may have to take a different path.

I would urge the public to know that inflammatory bowel disease isn’t just a dodgy tummy. It can affect your whole body and be extremely debilitating.

Everybody’s experience is different so I’d urge people to try to be understanding and not to judge by outside appearances.

John Hayes works as a Business Development Manager for a global security equipment manufacturer. He is married to Ruth and they have two adult children and a teenager.

John enjoys reading, running, cycling, and swimming.

World IBD Day

World IBD (Inflammatory Bowel Disease) Day is coming up on Monday, May 19.

IBD includes such conditions as Crohn’s disease and ulcerative colitis and is estimated to affect some 50,000 people here in Ireland.

Crohn’s and Colitis Ireland will be hosting a webinar, ‘IBD 101’, on that day, from 6.30-8.30pm, as well as publishing a new conversation guide, Gut to Know, on talking to people with IBD about IBD in a way that is understanding, supportive and empathetic.

Among those contributing to the discussion will be psychologist Dr Jennifer Wilson O’Raghallaigh, and two people living with IBD, Armagh GAA star, Niall Grimley, and Gogglebox Ireland TV critic, Sarah Reilly.

Niall and Sarah will share their lived experiences and personal anecdotes of chats with family and friends about IBD, while Jennifer will have lots of useful tips and advice on striking up conversations on the subject.

The webinar will also feature a keynote contribution from consultant gastroenterologist, Professor Anthony O’Connor, based at Tallaght University Hospital, who will provide an introduction to IBD, including symptoms, diagnosis, treatment, coping strategies and supports available.

Registration for the free webinar, which is supported by Pharmacosmos, can be made at www.crohnscolitis.ie

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Support Line

IBD refers to a number of chronic conditions, with Crohn’s disease and ulcerative colitis the most common.

With both, the immune system doesn’t work properly and the body starts attacking itself causing ulcers, swelling and inflammation of the gut.

In Crohn’s, inflammation can occur anywhere along the digestive tract, while, in ulcerative colitis, it affects the large bowel or colon.

Most common symptoms are urgent and frequent bowel motions sometimes with blood, diarrhoea, nausea, vomiting, reduced appetite, weight loss, stomach cramps, and painful joints and skin rashes.

While the exact causes of IBD are not fully understood, genetics, diet, changes in gut bacteria, and the environment, may be implicated. In managing IBD, a healthy balanced diet is recommended. Smoking is not advised, alcohol should only be drunk in moderation, and people should try to limit stress levels as best as possible, as each of these can make symptoms worse.

While IBD is a life-long, unpredictable condition, and there is currently no cure, early diagnosis and treatment can help to stabilise the disease and provide for a normal quality of life. Anyone concerned about IBD can call the Crohn’s and Colitis Ireland Support Line on 01 531 2983 (Mon/Wed/Fri, 9.30am to 12.30pm) or visit www.crohnscolitis.ie.