When Jonathan Healy got off the bus each day to go to the then NUI Galway, his first thought was not would he be on time for lectures, did he have enough money with him to buy his lunch, or was his latest essay sufficiently good to obtain a decent grade.
The young Claregalway student’s primary concern was the location of the nearest toilet. “I knew every single toilet on the way to the university,” says the now 33-year-old who has Crohn’s disease, an inflammatory bowel condition.
“There was the toilet in McDonald’s, then the one in the cafe of the former Born [store in Newtownsmith], and the Cathedral. Unfortunately, at times, the Cathedral toilet was locked. Sometimes, I wouldn’t even make it as far as McDonald’s or the Cathedral!”
He was hoping to study for a degree in politics and history but ill health put paid to that, and indeed, sadly, to many other cherished ambitions, too.
He began to experience the first symptoms of Crohn’s disease, which is characterised by diarrhoea, stomach aches, and fatigue, when he was nine-years-old. When he was eventually diagnosed with the condition, he was told he was the youngest such patient in Ireland. Interestingly, he recently met a woman whose baby has the disease.
“Crohn’s can affect anywhere from your gum to your bum!,” he says. “I was always a bit of a sick child. I had eczema and asthma.” Then, he began to suffer from persistent mouth ulcers and swollen lips. His mother initially thought it was eczema. His health continued to deteriorate and his daily life became dominated by urgent trips to the toilet.
“I was going to the bathroom 20 to 30 times a day. The condition impacted my day-to-day health and drove every decision I made. I always called it my jail sentence. Mornings were the worst, I was up at 6am. I was always signing in late for school, it was noon every day before I got in. Everyone thought I was mitching, but I was on the toilet!
“I was home schooled in third and fifth year and was only in school for 40 days of my Leaving Cert year. Calasanctius College [in Oranmore] had an initiative where teachers would come once a week to my house to give me homework. Throughout my time in school, the teachers were very understanding.”
Going on the bus
He loved playing sports and remembers worrying about going to a basketball match in Belfast. “I was so afraid of going on the bus in case I’d have an accident. So my mother took time off work to drive me.”
When he was 12-years-old, it was first suggested that he get an ostomy bag [a device that collects waste from the body]. When his hospital consultant told him four years later that this was now a necessity, Jonathan’s first reaction was: “Absolutely, not”.
“He said I wouldn’t be around [in the future] if I didn’t get one and I said that was fine! I thought getting one would be the end of my life.”
At 19, after a life-threatening bowel perforation, he underwent this surgery which dramatically improved his quality of life. “It was the start of a new life. It was the key for a door. It comes with its own complications, it’s not all sunshine and roses, but I wouldn’t be here without it.”
He was reminded of what a guidance counsellor told him at school when he began thinking about a career. He was advised to work with his hands. His father, John, was a mechanic but that path did not appeal to him. His mother, Rita, was a hairdresser who had worked in Barry’s Hair Salon for 30 years, and she suggested he try hairdressing. He did, and loved it.
His technical skills and creative flair won him many accolades during the 10 years he spent in the business working in Bellissimo and Renaissance hair salons in Galway. He won the national Trainee of the Year award in 2017 for achieving the highest score in upstyling, creative fantasy hair, and cut and colour. (“When they called out my name, I was in the toilet!” ). He also won the 2018 Wella People’s Choice award in the colour category.
He had a very successful career and decided to move to Dublin. However, after two years, his illness was making it increasingly difficult to continue working so he had to walk away again from a golden opportunity. “I always look back with a sense of grief. I had a job acceptance in London at one stage.”
Crohn’s disease has taken a severe toll on his health and he has worked hard at looking after his mental wellbeing. “I was unresponsive to a lot of medication, that’s why my condition was so severe.”
Difficult to cope
He underwent three major surgeries at ages 19, 26, and 31 involving the partial removal of his large intestine, then its complete removal and the removal of his rectum (He says it’s known as ‘Barbie Butt’ surgery! ) and finally, the removal of a portion of his small intestine, and the fitting of a permanent ileostomy bag.
During his teenage years, he found it particularly difficult to cope with his illness and the limitations it imposed on his life. Dating was a challenge and he, good humouredly recalls, going for a walk in a park with a new date when he was 16 and his mother hiding in the car park “incognito” lest he needed to be urgently whisked away to a toilet.
“When I was 15/16, I remember being 100 per cent down. I was on a waiting list for a psychologist and I was in a dark hole. I couldn’t see any way out. The only way I saw… was the wrong way.”
He recalls going on an “ostomy meet-up” and suddenly realising that everyone else there was so much older. “They were in their 60s and 70s. I was in the depths [of darkness] afterwards, saying ‘Why me?’ as I was so young.
“I remember being 19 and having a bit of a thick head on me. I was in very bad form and used to tell my parents not to bring me any food [when he was sick in bed]. That slowed my progress.”
He has a very positive attitude now but he says it took him a long time to get it and it is due in no small part to his parents paying for him to have counselling. “There is no quick or long-term fix for my condition, it will never be over. There are about 50,000 people in Ireland living with it and it has massive physical and mental effects. I found the illness easier to navigate as I got older and I avoid comparing myself with other people my age [who do not have the condition] as comparison is the thief of joy.”
Jonathan, who is one of a family of three, who now live in Craughwell, says he is fortunate to have great parents and to be surrounded by a supportive family. “Counselling has been a mainstay, I top it up every three to four months. It’s like the gym for my mind.” He is indebted to Mr Myles Joyce, his consultant general and colorectal surgeon, whom he describes as “unbelievable”. “He saved my life on three occasions.”
Honest conversations
While Crohn’s disease robbed him of a college education and a successful career, he says it opened other doors for him. He set up a small business called Síoda Hair in November 2022 (www.siodahair.com ) which sells hair products made from mulberry silk. The company is committed to promoting hair health and sells scrunchies, pillowcases, luxury gift boxes, Mommy and Me gift sets, and hair bands.
He launched a podcast at the end of August called, “The Survival Project” ([email protected] ) which focuses on navigating life with a chronic illness. “The podcast is a space for honest conversations about chronic illness, resilience, and the power of lived experience,” he says. “I’m loving it! ” He hopes it will help people and spare them some of what he went through living with this “relentless” illness. “A lot of young people who have this condition don’t talk about it. I got a message from a young man who said if he hadn’t seen me with my top off at a beach club in Ibiza, he wouldn’t have had surgery.”
Jonathan also does a lot of ambassadorial work, talking about coping with Crohn’s disease. He is keen to reach out to other people with the condition and heighten awareness about the financial implications of living with it in terms of missed work hours, buying healthy food, and “cooking from scratch”.
“More people are being diagnosed every year with this incurable condition yet it is not on the Long Term Illness scheme. I’ve been a financial burden on my parents since I was born. My mother calls me ‘her emeralds’. “She said she would be covered in them only for me!”
He feels well currently but the illness can “rear its ugly head” at any time, he says. “I had surgery in 2023 but it [the condition] came back a few months later. “I follow a protocol, I do breath work, I try to avoid stress, and I take supplements for gut health. I only started talking [publicly] about the disease in the last two years.”
Sleep is a major challenge for him. “I have broken sleep, I can’t stay asleep for more than three to four hours. There’s a thing with Crohn’s disease and sleep disturbance and brain fog. A few years ago I wouldn’t be able to have had this conversation [the interview]. I’d have been humming and hawing. I lost my identity for a period when I was young through brain fog.”
He is spiritual and likes to go to a local grotto to light a candle. “The only reason I’m still here is because of my mother and grandmother’s prayers. When I was younger, my grandmother would always pray to the Sacred Heart and tell me that when all felt hopeless to always remember to look for guidance.” He has several tattoos on his body which represent the various stages of his life and his beliefs. He has a tattoo of the Lord on the middle of his chest.” I have also one on my neck of the Archangel Raphael and Tobias from the bible story, ‘The healing of Tobit’, which has as its theme, divine guidance, healing, faithful living, and protection on the journey.”
What is Inflammatory Bowel Disease (IBD )?
IBD is a chronic condition that includes Crohn’s disease and ulcerative colitis. It causes inflammation in the digestive tract, which can result in structural damage to the intestines over time, according to Dr Orlaith Kelly, a consultant gastroenterologist at Blackrock Health, which operates three private hospitals in Ireland, including the Galway Clinic.
The exact cause of IBD is not fully understood, but it is believed to result from a combination of genetic, environmental, and immune factors. Essentially, the immune system mistakenly attacks the body’s own intestinal tissue, leading to ongoing inflammation. It typically develops in young adulthood but can occur at any age, and symptoms can vary from person to person.
“Both Crohn’s disease and ulcerative colitis are forms of Inflammatory Bowel Disease (IBD ), and while they affect different parts of the gut, their symptoms often overlap,” she says. “People may experience persistent diarrhoea (sometimes with blood or mucus ), abdominal pain or cramping, fatigue, low energy levels, rectal bleeding, or unexplained weight loss. These symptoms can come and go, but when they persist or worsen, it’s important not to ignore them.
“Crohn’s disease can affect any part of the gastrointestinal tract, from the mouth to the anus, whereas ulcerative colitis is limited to the colon and rectum. Because these are chronic, lifelong conditions, early diagnosis and the right treatment plan are key to managing symptoms and avoiding complications.”
Recent research, carried out by Crohn’s & Colitis Ireland (CCI ) and Johnson & Johnson, highlighted the extent of the financial strain placed on people with the condition and their families. Six in 10 people with IBD face financial difficulty and 75 per cent reported experiencing anxiety or depression.
• For further information contact the Crohn’s & Colitis Ireland helpline at (01 ) 5312983 on Mondays, Wednesdays, and Fridays from 9.30am to 12.30pm or email: [email protected]
• Check out the following podcasts – Gutcast by Crohn’s and Colitis Ireland and Johnson & Johnson on living with IBD and The Survival Project by Jonathan Healy.
