What would you do? Crohn’s and Colitis Ireland Publishes Guide to Supporting People Living with a Stoma

Marking World Stoma Day on Saturday October 3, Crohn’s and Colitis Ireland has published a new guide to supporting people living with a stoma titled “What would you do?”. The guide aims to challenge stigma, build awareness and create a supportive environment for those with a stoma. It is being presented in tandem with a webinar on World Stoma Day, “What Would you Do? Life, Leaks, Confidence & Community”, featuring a young IBD advocate and stoma nurse specialist.

Inflammatory bowel disease (IBD) is estimated to affect approximately 50,000 people in Ireland. Perhaps more familiar to people as Crohn’s disease or ulcerative colitis, it is where the immune system doesn’t work properly, causing ulcers, swelling and inflammation of the gut.

Surgery
Most common symptoms of IBD are frequent bowel motions, sometimes with blood, diarrhoea, nausea, vomiting, stomach cramps, painful joints and skin rashes. When bowel damage becomes so severe, it can be necessary to surgically create a stoma, or opening, from the gastrointestinal or urinary tract to allow waste to exit the body into a stoma bag.

The webinar on Saturday October 3 at 12 midday will feature candid contributions from IBD advocate, 18-year-old Lydia O’Connell, on life after stoma surgery, and Coloplast Stoma Nurse Specialist, Eileen Lim Joon, on everyday realities, managing leaks and skin issues, and building confidence. Details of the webinar, and how to register, can be found at www.crohnscolitis.ie

Freedom
Leaving Cert student, Lydia O’Connell, from Cork city, was diagnosed with Crohn’s disease at the age of 11 and underwent surgery for a stoma just last year following a collapse due to a perforated bowel. Lydia says:
“Having a stoma has been like night and day for me, to how I used to be. It’s taken away so many of my symptoms and has given me my life back. I’m not in any pain. I’m barely sick any more. I used to have arthritis as one of my symptoms and sometimes would struggle to walk—that’s gone. I’ve been able to go out more and go on holiday too.

“That said, there have been bumps along the way. Last July, I was out shopping and popped into a well-known fashion retailer in Cork. I was trying on dresses and, as I was taking one off, my stoma bag just opened all over the dress. I was extremely panicked and called to my mum, who came to my aid and informed an assistant. The staff could not have been more chill and didn’t make a deal out of it. They said not to stress and gave me a bag for the dress. We were fully willing to pay for the dress, and any damages, but they were so kind and said they would dispose of the dress and cover the cost. It turned out the assistant’s dad also had a stoma so she understood completely and said these things are normal. People have been so kind and supportive to me.”

For Victoria Spillane, Interim Chief Operating Officer with Crohn’s and Colitis Ireland, World Stoma Day offers an opportunity to shine a light on what we can all do to support people living with a stoma in our communities:
“This new guide aims to give people an insight into life with a stoma as well as practical tips for family members, friends, and workmates on how best to support someone. We hope that people will go away with a better understanding of what it is like to live with a stoma, how their practical and emotional support can make a real difference, and how we can all work to create more inclusive and supportive environments.”

Five Ways You Can Support Someone with a Stoma

Children—if your child has a stoma, encourage them to ask questions. Let them know that it doesn’t define them and help to develop their confidence in looking after their stoma bag. Check in with their school to ensure that they feel supported.
Friends—if your friend has a stoma, don’t stop inviting them out, even if they may sometimes have to cancel due to health issues. Be open to listening without trying to fix everything.
Loved ones—if your partner has a stoma, remember that they may be adjusting to changes in their body image and sense of confidence. Reassure them that they are still the person you love. Don’t assume that they need support—ask instead—and celebrate progress together.
Workmates—if your colleague has a stoma, focus on their abilities, not their condition. Employers should support a person with access to toilets and in attending medical appointments. Flexible working arrangements should be offered where possible.
Everyone—we can all respond with kindness rather than judgement, standing up against stigma. Whether it’s learning about stomas, offering a lift to an appointment, or continuing to include people in everyday life, we can all make a difference.

To join an online Crohn’s and Colitis Ireland support group, download the guide, or to register for the webinar, visit www.crohnscolitis.ie.

ENDS

Photo Credit: Hannah Busing on Unsplash