Louth Googlebox star raises awareness for Crohn’s disease

A new conversation guide on talking to people with inflammatory bowel disease (IBD) about their condition aims to banish thoughtless remarks and ill-informed commentary to the past.

Published by Crohn’s and Colitis Ireland to mark World IBD Day on Monday May 19, Gut to Know aims to help people be understanding, better informed, and ultimately more empathetic, when speaking to someone who has IBD. 

For Dundalk native and Gogglebox Ireland TV critic Sarah Reilly, being part of the new Gut to Know campaign is deeply personal. Diagnosed with Crohn’s disease at just 22, Sarah has spent years navigating the challenges of living with a chronic illness that is often invisible, misunderstood, and difficult to explain. 

Now 30, she’s lending her voice to Crohn’s and Colitis Ireland’s initiative aimed at improving how people talk about inflammatory bowel disease (IBD). As someone who has struggled with both the physical and emotional toll of the condition, Sarah believes that understanding and empathy from others can make a significant difference. By sharing her story, she hopes to help banish the stigma and awkwardness that too often surround conversations about IBD — and to encourage open, informed, and compassionate dialogue.

“Back in 2017, I had a pain in my lower right side and attended A&E. Initially I was told it was ‘textbook appendicitis’ before a scan revealed an inflamed ileum and I was diagnosed with Crohn’s disease. I was 22 at the time and had no real idea what it meant. The most information I received on Crohn’s disease was when my husband printed out the whole Wikipedia page for me when I came home from hospital.

“Last year, I had the toughest year since my diagnosis. Every blood test that I had was bad news. It felt like I was in hospital every second week. When I wasn’t in hospital, I was worrying about the next visit or the next test. There were times when I was waking up with all of my focus on making it to bed that night. I was consumed with pain and also with the fear that life would always be this way. 

“I had extremely bad health anxiety and would spend hours ‘doom-scrolling’. It’s so important to speak up about how you are feeling which is something that I struggled to do. It’s hard to explain to everyone in your life what Crohn’s is and how it impacts you. It can be exhausting to even try. However, if those around you know and understand, it can really bring a lot of relief to you.”

The subject will also form part of a major webinar, IBD 101, taking place on Monday May 19 from 6.30-8.30pm.

Among those contributing to the discussion with Sarah will be psychologist Dr Jennifer Wilson O’Raghallaigh, and Armagh GAA star, Niall Grimley. Niall and Sarah will share their 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, Prof. 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

For psychologist, Dr Jennifer Wilson O’Raghallaigh, like the person diagnosed with IBD, family members and friends are also embarking on a journey of health discovery of their own, with learnings for all involved:

“I often talk about the myth that some of us have that we can control our bodies. Not only does the myth shatter for people when pure bad luck leads to a diagnosis of a chronic disease, but they also need to find a way to communicate about their health with their loved ones, who may still want to believe that control is possible. That’s a hard line to walk. The person diagnosed has to change the way that they are living which, by extension, means that the lives of those around them also change.

“Unless they’ve had a similar experience with IBD, and even sometimes if they have, our loved ones are learning alongside us on how to talk about health, symptoms, treatments and fears. Most of the time, they feel compassion but don’t know exactly how to express it. They worry that they are interfering, or being nosey, or that they might say the wrong thing. When we have a chronic condition like IBD, we don’t want to burden our loved ones or lose our autonomy. At the same time, we might need help sometimes. Using good communication strategies such as those outlined in the Gut to Know conversation guide can help smooth over some of the rough patches in negotiating tricky conversations. Ultimately, it will enable family and friends to better offer support in managing the symptoms experienced.”

For Amy Kelly, Chief Operating Officer at Crohn’s and Colitis Ireland, who herself has been diagnosed with Crohn’s disease, the new guide aims to take a lot of the guesswork out of striking up a conversation about IBD:

“As someone who lives with Crohn’s disease, I know only too well how worried family, friends and colleagues have been at times about wanting to say the right thing and not wanting to put their foot in it. This new guide offers a really useful starting point and go-to resource for people who want to support the person with IBD in their lives and to do so in a way which is considerate and thoughtful. 

“Unfortunately, the lived reality for many people with IBD is that they often feel judged because their symptoms aren’t always visible. This guide aims to change that and to let people with IBD know that they are understood and, perhaps most importantly, believed.”

For Armagh senior footballer and All-Ireland champion, Niall Grimley (31), being diagnosed with colitis in May 2021 was hard to accept, but he is now much more positive about the future:

“Back in 2020, I was in a lot of pain and discomfort before being diagnosed the following year. While I have since been hospitalised twice, thankfully, now, my symptoms are under control. I take fortnightly injections of a biologic medicine which allows me to live a normal life with my IBD in the background.

“It took me nearly three years to accept that I have this disease. Today, my view is that a positive approach brings about a positive outcome. I try to deal with things and move forward. I think carefully about my lifestyle choices and the food and fluid that goes into my body. I try to have a balanced diet and follow the 80/20 rule—80% healthy food and 20% not so healthy! 

“My aim is to live a healthy and happy life with my family, and to continue to enjoy my football and work. My advice to anyone newly diagnosed with IBD is to ask loads of questions and search for help professionally. Speak up and be proud. You are not alone.”

It is estimated that there are approximately 50,000 people in Ireland living with IBD which 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.

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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 lifelong 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.