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IT WAS BACK in May 2009, and I was just 15 years of age. I was lying in the emergency room, with my first-ever intravenous line in my arm. I was wearing a lot of layers, in part to disguise my weight loss, but also due to the fever and chills I was experiencing.
I was drifting in and out of consciousness because the walk through the labyrinthine hospital a few hours back had exhausted me. When I awoke, I was mortified, remembering how I’d vomited everywhere in the consultant gastroenterologist’s beautiful office.
My mam looked ashen. She hadn’t realised how sick I was. She certainly was not expecting the trip to the emergency department, the scramble to figure out what was going on with my body, and the conclusion that I had a chronic, autoimmune disease called ulcerative colitis.
Prior to the onset of my symptoms over the previous year, I had been a healthy and energetic teen. I loved martial arts and team sports and enjoyed giving everything a go. I loved art, music, debating and reading, and, to be honest, I was a huge nerd.
Moreover, I loved food. My grandmother used to lovingly tell me, in that very Irish way, that I was a ‘great eater’.
It all started after I developed a vomiting bug when I was 14. Even when the upper gastrointestinal symptoms dissipated after a week or so, the intense stomach cramps and diarrhoea persisted, and blood and mucus started to appear with each visit to the toilet.
Naturally, I was really frightened by all of this. However, as a young teenager, I found the idea of talking about bowel-related topics extremely embarrassing. Self-image is everything at that age.
I really didn’t want people noticing how often I needed to go to the toilet or how long I was spending there, so I tried to limit it. Naturally, this didn’t always end well. When I started losing loads of weight alongside the other symptoms, with help from Dr Google, I convinced myself that I must have bowel cancer.
I was extremely anxious about all of this, but eventually worked up the courage to tell my mam, who assured me that I likely had piles or food poisoning, and that I would be fine. I was so relieved to hear her calm reaction, but I still had a niggling sense that what was going on was much more serious. I badly wanted her to be right.
My menstrual cycle disappeared into thin air. I started developing a jaundiced appearance, and my hair thinned out around my face. I fainted in school during PE. My concentration levels in class were terrible. Every day, I would come home and go straight to bed because I had no energy to stay awake for the evening. I felt like I wasn’t in control of my body anymore. I honestly believed that I’d do my Junior Cert exams and then die.
The end.
About a week before the exams were due to start, I could no longer keep food down. My mam was alarmed and brought me to the doctor immediately. When the GP got the results of my blood and stool tests, I was given an emergency appointment with a gastroenterologist that same day.
This appointment ended up in a month-long admission, a colonoscopy, innumerable x-rays and other scans, iron infusions for the anaemia I had developed, and a long course of steroids and immunosuppressants.
It was a weird time emotionally. I was actually pretty relieved to have an official medical name for what had been going on for so long. It was ulcerative colitis, a type of Inflammatory Bowel Disease (IBD), where sores/ulcers and inflammation develop in the digestive tract. I would never be cured, but medication could help me manage it for life.
I was also shocked at how fast the steroids worked their magic. I had forgotten what normal felt like. When my energy levels started to come back, and I could exercise again, I felt like crying. It was like some sort of miracle. I would live.
Of course, I did end up being ‘othered’ in school when I returned in September. People stared and whispered — teachers and students alike. A lot of people assumed I’d either had cancer because of my appearance or had gone through some sort of breakdown due to exam stress. Closer friends kept mixing up IBD with IBS (Irritable Bowel Syndrome) and saying that they too had a ‘tricky tummy’— a mix-up that to this day I am still trying to correct.
Taking 20 tablets daily in front of people was another pet hate, as it led to more gawking. It all seriously affected my self-confidence for many years.
After a botched attempt at state exams, my second run yielded happier results. I went on to study biomedicine at university, eager to understand the pathophysiology of IBD and other autoimmune and inflammatory diseases like it. I have since fallen in love with neuroimmunology and am currently in the final year of my PhD. Moreover, I’m lucky to have many supportive people in my life, particularly my partner Steve, who always makes me laugh.
Given that I developed IBD so young, it has sort of grown up and evolved alongside me. Symptoms and treatments have changed, comorbidities such as kidney stones, joint inflammation and many, many infections have arisen.
I’ve also become more aware that while IBD is not colorectal cancer, it can increase your risk of developing different types of cancer. While I try not to dwell on this too much, I always push for screening and try to maintain a healthy lifestyle where possible.
I think many workplaces don’t really understand an illness like IBD and can’t visualise the everyday toll it takes. I’ve had to train my self-advocacy muscles over time.
Being believed is half the battle. Chronic illness is expensive, alienating and stressful. It affects your mental as well as your physical health. Finding your voice, while challenging, is very important. Equally, so is having it heard.
Marking World IBD Day, Crohn’s and Colitis Ireland will host a major webinar, “IBD 101”, this evening from 6.30-8.30 pm. For full details and to register for free, visit www.crohnscolitis.ie.
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