I REMEMBER COMING in from school when I was about 11. I was in fifth class, and my lips were double the size they were when I left that morning. My gums were red and inflamed.
My mom was shocked, wondering what had happened. I went to the dentist, and he said it was probably a gum infection and gave me medication.
When that didn’t work, I was sent to the Cork University Hospital dental department to figure things out, before being ultimately referred to a gastroenterologist for a colonoscopy.
I was so confused about all of this and what it even meant. It was the time of the pandemic and social distancing, which made it all the harder.
I remember struggling to take the prep for the colonoscopy and getting sick. When Crohn’s disease was confirmed, I was too young to understand what it was, but it was no shock to my mom, as it ran in her side of the family.
Things would escalate. I lost a lot of weight, and the gum pain got worse.
I was referred to CHI Crumlin, and I remember the doctor saying to me that it was one of the worst cases he’d seen. Me and my mom didn’t realise it was that bad.
I was started on treatment, but the following year, during the week of my Confirmation, I started to develop rashes and lose some hair.
Psoriasis was confirmed, and it spread all over my body. I was also starting to develop terrible pain in my hips and knees, which turned out to be arthritis. I was struggling to walk.
My doctor thought that these issues were medication-related side effects, and so I was put on a different treatment.
Learning to live with a condition
I was just starting secondary school, and struggled massively with my confidence, trying to conceal my hair loss and to look “normal”.
My escape from all of this was music, concerts and musicals. I guess they were a chance for me to forget about everything that was wrong and to leave my illness behind for a while.
Last June, I was admitted to the Mercy University Hospital in Cork for a flare-up, for what turned out to be two months.
The pain I was in was terrible. I was crying, wondering, “Why me?”. There were periods where I was put on meal supplement drinks and, at one point, was off food for over two weeks. I remember having to force myself to drink the supplements as they usually made me nauseous.
It was rough spending my 17th birthday in hospital, being so sick, on a liquid diet, and not being with friends to celebrate.
It was easily the hardest time of my life, as I grieved losing out on my summer and everything that I was missing.
During this time, my doctor suggested an ileostomy bag. Initially, I was terrified of the thought of surgery and was in denial. I would try everything before I would get it.
Six days after my birthday, I got up to go wash my face and brush my teeth when, all of a sudden, I felt dizzy. I collapsed in my mum’s arms and blacked out.
I woke up surrounded by doctors repeating my name and talking about bleeding. Not only that, but I was so confused, and thought “what bleeding?”. That was when I saw that my shorts were saturated and that there was a massive pool of blood on the floor.
I was rushed around the place getting different tests to figure out what was wrong and given a blood transfusion due to how much blood I’d lost.
The surgeon came in and told me that my colon had perforated, followed by the news I was dreading. “You have to get a stoma bag”. I was filled with panic and shook my head. She told me I had to get it or there was a chance I wasn’t going to make it.
Life with a stoma
I just burst out crying. My worst nightmare was becoming a reality. I reluctantly signed the consent and was whisked into the operating room. I remember sobbing at the sound of the surgeons’ assistants getting the scalpels and equipment ready. To this day, it still sends a shiver down my spine.
I woke up the following day with my stoma. I barely remember it because I was so high on painkillers. I remember a stoma nurse telling me that I should name my stoma to help take the medical feel away. I ended up naming her after Sandy from Grease.
The days following were hard, adjusting to my new life and learning how to change a stoma bag. There were multiple nights when I would cry myself to sleep over how much I hated my bag.
I remember turning to social media to find people with stomas. I found this really helpful as these were normal people, showing everything that they could do. It was then that a switch went off in my mind, and I started to love and appreciate my stoma.
Four weeks later, I was at a Lewis Capaldi concert, and he started singing Survive. It hit me — this was my “I made it” moment. I remember the tears streaming down my face and turning to my mom, who was bawling as well.
Today, it’s fairly normal to see me tucking my T-shirt behind my jeans to make sure my bag is seen. I have also bought special covers to make it more fashionable and often centre my outfits around it.
My stoma has given me my life back and allowed me to be a teenager again. I am forever grateful for this medical intervention.
Brighter days are coming.
Marking World IBD Day on Tuesday May 19, Crohn’s and Colitis Ireland is hosting a webinar and has developed a new hands-on guide, It Takes a Village, on supporting people with IBD. To access the guide, or to register for the free webinar, see www.crohnscolitis.ie/ItTakesAVillage