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Marking World Inflammatory Bowel Disease (IBD) Day on May 19,
Crohn’s & Colitis Ireland Publishes New Guide
on Talking to People with IBD about IBD called "Gut to Know"
- Crohn's and Colitis Ireland to host IBD 101 webinar and patient panel discussion -
“You look fine, are you sure you’re really that sick?”
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. 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 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, 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.
Saying the Wrong Thing
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.”
You’re Not Alone
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.”
For Gogglebox Ireland TV critic, Sarah Reilly (age 30), from Dundalk, being diagnosed with Crohn’s disease had a huge impact on her mental health, but that the understanding and support of people around her is crucial:
“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.”
Support Line
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.
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.
Six Tips for Talking to People with IBD about IBD
Privacy please. Ask the person with IBD if it’s OK to ask questions about their condition. Some may be happy to talk. Others may not. Listening and offering your undivided attention helps the person to feel supported. Ask open-ended questions such as “how are you feeling today?”
Offer empathy not pity. Acknowledge the person’s feelings and circumstances but avoid expressing pity. “I’m here for you” or “is there anything I can do?” are so much more helpful than “I feel so sorry for you”. Acknowledging unseen symptoms such as fatigue, joint pain and mental stress with the words “I believe you” can provide great comfort and relief.
Think before you speak. Avoid blaming the person or trivialising what they are going through. Saying “you’re stressing too much” or “everyone gets stomach aches” or “I heard about a miracle cure” do nothing to improve their situation.
Getting down to business. If you’re an employer, are there ways in which you can adjust workloads, or provide for flexible hours, breaks or remote working, that would help your colleague? Think about the work environment and how accessible the toilet facilities are. Let your colleague know that it’s safe to discuss their needs without fear of judgement—“I want to sit down with you to find solutions that work for everyone”.
School of life. If you’re a teacher, allow the student to leave the class without having to ask for permission. For example, you could say “If you need to leave class, just go, we’ll catch you up later”. Think about how school deadlines can be adapted in the event of absence due to a flare-up. If going on a school trip, consider how the student can travel in comfort and enjoy the activity. Collaborate with the school counsellor to ensure emotional support is available as required.
A shoulder to lean on. If you’re a family member or friend, do include the person with IBD on invites to nights out and outings, but if the person is unwell and the answer is “no”, respect that. For example, you could ask “Would you like to stay in or do something low-key if you’re not up to going out?” Offer practical help with chores, errands and travel to medical appointments. On more manageable days, celebrate “small wins” and enjoy the moment.