For every person navigating the ups and downs of inflammatory bowel disease, a new campaign by Crohn’s and Colitis Ireland aims to highlight the fact that no one person with IBD lives in a vacuum, but are joined by a wide circle of family, friends and many others, travelling that journey alongside them.
“It takes a village to live with IBD, people with IBD simply can’t do it alone,” said Victoria Spillane, Chief Operating Officer, Crohn’s and Colitis Ireland.
This year, to mark World IBD Day on Tuesday, May 19, the charity is shining a light on the pivotal role that we all play in helping people to live well with IBD.
A new hands-on guide, It Takes a Village, has been published to bust myths, advise on language to use and to avoid, and offer guidance on how to be a great ally.
More commonly known as Crohn’s disease or ulcerative colitis, there are approximately 50,000 people living with IBD in Ireland.
These are conditions where the immune system doesn’t work properly and the body starts attacking itself, causing ulcers, swelling and inflammation of the gut.
The most common symptoms are frequent bowel motions, sometimes with blood, diarrhoea, nausea, vomiting, stomach cramps, painful joints and skin rashes. While there is currently no cure, early diagnosis and treatment can help to stabilise the disease and provide for a normal quality of life.
Sarah O’Connor from Crusheen is 29 years old, and was diagnosed with IBD in December 2020.
“I probably had Crohn’s for a lot longer than before it was really realised, there was a lot of back and forth and tests,” she said.
Her mother had been diagnosed with the same condition in 1999, so IBD has been a part of Sarah’s life “for as long as I can remember”.
“I suffered with what was deemed to be irritable bowel syndrome for years and had various tests and colonoscopies from about the age of 16 that were always clear,” she said.
“However, during 2020, things escalated and I was losing a lot of weight, passing blood and mucus, experiencing worsening abdominal cramps and increased bowel movements.”
Sarah, who also documents her life with Crohn’s on Tiktok @saraho_connorr, has undergone multiple treatments including various biologic medications, immunosuppressants, anti-inflammatories and steroids.
She described “a huge sense of grief” that came with being diagnosed, which was further deepened when she was diagnosed with multiple sclerosis (MS) in 2022.
“Having MS also comes with challenges, including symptoms such as numbness, tingling, weakness in my limbs and fatigue. It also can have an impact on the medications that I can take for Crohn’s, and vice versa, so living with both Crohn’s and MS is a constant juggling act,” she explained.
This double diagnosis has not slowed Sarah down, as she has undertaken a sky dive for Crohn’s & Colitis Ireland and MS Ireland, hopes to complete a Hyrox fitness race in Sligo this August, and is intending to start training to become a Pilates instructor this September.
She is a Public and Patient Involvement Contributor on an MS-focused study and related Trial Steering Committee being undertaken by the University of Galway, as well as working remotely as a full-time marketing manager.
“I won’t say I’m fully over the grief, or that I’ve fully accepted my diagnoses, as I believe this is a long journey, but I am better able to see the positives that having chronic illnesses has given me, as strange as that sounds,” she said.
“I’m now a more empathetic person. I look after my mind and body far more than I used to.”
“I appreciate all the small things and I don’t wait around for the right time to do something or leave things for the future – I do them now.”
She doesn’t shy away from the negative impacts of IBD either though, which has brought “much uncertainty to every day” and can be hard for others to understand what she’s going through.
“It makes planning really difficult,” she said.
“I work fully remotely and struggle to see how I could work in a job that isn’t remote. I also see the worries my family and boyfriend have for me.”
For others living with IBD, Sarah says “never give up advocating and fighting for yourself, when it comes to your body, you are the expert”.
“When things don’t feel right, and you feel you’re not being listened to, keep fighting,” she said.
“You are stronger than you know and you must use that strength to fight for yourself.”
A major webinar is also taking place on May 19 from 7-8.15pm, featuring contributions from Dr Susan Brannick, a clinical psychologist with expertise in IBD, and clinical director with Aware, and Gogglebox Ireland TV critic, Sarah Reilly, who lives with Crohn’s disease.
Both Susan and Sarah will be highlighting the importance of having the support of the “village” when living with IBD, how to go about identifying support networks, and pointing to lots of real-world ways that we can all help.
Visit crohnscolitis.ie to register for the free webinar.
Reporter covering Shannon Town and the surrounding area, Ellen Gough studied journalism and politics at University of Limerick and has a strong background in local news. A native of Limerick, she has previously worked for The Limerick Leader, The Echo in Tallaght and Hot Press Magazine.