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Sarah visiting Iceland.
VOICES

My story 'When you become chronically ill, you quickly learn that health is everything'

Sarah O’Connor tells of her diagnosis of autoimmune disease, and how she’s learned to thrive since.

THE CORRIDOR OUTSIDE the endoscopy unit was full. People sat on chairs nervously waiting. Others stood against the wall. More paced up and down. All had masks on as it was peak-Covid time in December 2020. As I fell out the door of the unit, tears streaming down my face, I recall the heads turning.

You see, I had just received a diagnosis of ulcerative colitis, a form of inflammatory bowel disease (IBD). I was inconsolable and afraid. IBD is an autoimmune condition resulting in chronic inflammation of the digestive system and typically refers to two conditions – Crohn’s disease and ulcerative colitis – though there are other types.

The reality was that my IBD story didn’t actually begin that cold December day. It had begun in 1999 when my mother was diagnosed with Crohn’s disease.

It was something that I had grown up around and knew about from a very young age. However, it was only with my own diagnosis that I began to fully understand it. I rang my mother that evening. I remember saying, ‘I don’t want to live like this. I can’t do it’. I will always regret saying those words, as my mother has always shown incredible strength and has been an inspiration to me.

Signs from early age

Let me rewind. I was always the ‘sick’ child, and part of this included having a ‘dodgy’ stomach from around the age of 12. Colonoscopies, stool samples and blood tests were always clear. So, until my diagnosis at the age of 24, it was deemed that I had irritable bowel syndrome (IBS).

Although the risk of developing IBD is relatively low if one of your parents has it, I always felt that I would develop it. Having had both chicken pox and glandular fever twice growing up, I didn’t have huge confidence in my immune system.

5. Sarah O'Connor visiting Kirkjubæjarklauster waterfall on a trip to Iceland in December 2022 Sarah visiting Iceland.

During the lockdown of 2020, my symptoms got progressively worse. By November that year, I began passing blood and mucus with every bowel movement. I had urgency to go to the bathroom, my visits were more frequent, and I was experiencing diarrhoea and unbearable abdominal pain.

A visit to my GP led to bloods being taken, a referral for a colonoscopy and a stool sample being sent away to check for a protein called calprotectin which is raised when people with IBD have a flare-up.

Diagnosis

The results of my calprotectin test came back the same day that I had my colonoscopy. I had ulcerative colitis. I was placed on steroids immediately to try to bring the inflammation down. This progressed to oral immunosuppressant medication, injections and then infusions.

Unfortunately, in March 2022, I received further shocking news with a diagnosis of multiple sclerosis (MS), another autoimmune condition whereby the body attacks the myelin sheath which surrounds the nerves of the brain and spinal cord. This has made my IBD treatment even more challenging and, in addition to extra symptoms, brings with it further worry and stress.

dcim113goprog0312600-jpg Sarah skydiving.

When you become chronically ill, you quickly learn that your health is everything. I once read on a hospital wall, ‘Health is a crown worn by the well, seen only by the sick’. I couldn’t agree more.

Being diagnosed with IBD has changed my life in so many ways. I grieved for my old self for a long time. There are days when I still do. Daily life can be unpredictable, so I try to enjoy every single good day and never take those days for granted. It has allowed me to reevaluate what matters the most in life, and to prioritise my health, those that love me, and the people and things that bring joy to my life. I’ve jumped out of an aeroplane, abseiled off Croke Park and ticked numerous things off my bucket list. I’m determined to live as best I can.

Learning to live again

IBD has given me the gift of greater openness, honesty and empathy. From the very beginning of my diagnosis, I have been hugely open with friends, family and work about my illness and how it impacts me. This has extended to being open and honest across my social media. Talking about poo is something that a lot of people find uncomfortable but we have to remember that everyone does it. Even Kim Kardashian or President Michael D Higgins!

Screenshot 2024-05-17 at 20.10.18 Sarah with her mother Noreen.

If there is one message I have about IBD, it is to speak up if you’re concerned about your symptoms and keep speaking until you’re listened to. The noisy wheel gets the most attention. You have to be your own best advocate and that starts from day one. Unfortunately, it can be difficult to get a diagnosis and often people with IBD are told that it’s anxiety or stress or IBS.

You know your body best and, hard as it is when you’re already going through so much, you have to fight. Fight to be seen, fight to get the treatment that you deserve, and fight for your life. Symptoms such as passing blood, persistent diarrhoea, abdominal pain, fatigue and unexplained weight loss, are not normal. Don’t suffer in silence. Speak up. Overcome the poo taboo!

Marking World IBD Day, and celebrating 40 years since its foundation, Crohn’s and Colitis Ireland is hosting a national conference for people with inflammatory bowel disease in Cork city on Sunday, May 19. To register to attend in person, or via the live stream, see www.crohnscolitis.ie.

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