Rugby player John Ryan had just got his first professional contract with Munster, during his final year at University College Cork, when he began having distressing symptoms including stomach cramping, pain, and passing blood.
Ulcerative colitis, along with Crohn's disease, make up what's known as inflammatory bowel disease (IBD), a condition characterised by chronic inflammation of the gastrointestinal tract (not to be confused with IBS, irritable bowel syndrome, although it is possible to have both). It is a chronic condition, usually involving periods of remission and periods of flare-ups.
"I definitely worried for my sporting career," Ryan says, of that diagnosis. "But I was also relieved that I knew what I had, I was going to get it treated and I was assured that, as long as it didn't progress, there was no reason I couldn't keep pursuing a professional rugby career."
Ryan is talking now to get word out about a new podcast series, Gutcast, launched today by the Irish Society for Colitis and Crohn's Disease (ISCC) in partnership with Janssen Sciences Ireland UC, in response to new national research that shows the extent of mental health concerns among those living with IBD and the need for accessible supports for stress, anxiety and depression, all of which are being compounded by Covid-19.
The research conducted among people living with IBD has revealed that 82pc of people say they have experienced stress, 74pc had experienced anxiety and 53pc have experienced depression, due to their condition.
Gutcast, therefore, has been developed to provide practical advice and information for people living with IBD, and is hosted by Amy Kelly, Crohn's patient and board member of the ISCC, who talks to those diagnosed with IBD as well as a broad range of specialists.
So how did the diagnosis affect Ryan? "I started on medication, and it didn't get any worse for a few years. But the demands of the body and mind in sport are massive, and it got suddenly worse in 2014. I did a fitness session and I wasn't feeling great, and I remember thinking before the session, 'if I do this, I'm going to feel way worse afterwards, but if I don't do it, I'll have my teammates looking at me and thinking, 'he should have done this…'
"At that stage, not a lot of people knew about the diagnosis. Only my closest friends and family. Because I thought that if people knew, it might affect my getting a contract. They'd think 'there's something wrong with him…'"
Sure enough, he says, "the day after the training session, I got quite ill. I was in bed with flu-like symptoms. The ulcerative colitis came back, way worse than before. I rapidly lost weight that year. I play prop - I need to be a big guy; I was 19 stone, and I went down to 17 stone. It's still a heavy weight, but I couldn't play in my usual position, I didn't have the strength. I had to get heavier medication, and that helped me to get back to a good position of fitness"
That, he says, is when he decided to speak about his condition publicly. "It was kind of like a weight off my chest," he says, "to just say 'this is my deal, this is what's wrong with me. I can handle it, I can keep going and achieve my goals."
Does he think people, men especially, don't speak out because they are embarrassed? "I would agree with that 100pc. I've been in situations on a night out, say, where I've gone to the bathroom many times, and someone might comment and I'd be embarrassed and say - 'no, I'm making a phone-call'. I'd lie about it."
Deciding not to do that, he says, made a significant difference to his life. "When you're out in the open, it stops that over-thinking. Those years, 2011 to 2014, when I was hiding it, that stopped me from achieving more. When I started talking about it, that pushed me onto a starting place with Munster, pushed me on to an international jersey - I'm pretty happy with that.
"I have to work a bit harder than everyone, to achieve the same as the other lads. That makes me a bit prouder of what I've achieved despite my illness. And, I'd hope that I'm having some sort of effect. I hope that speaking out gives other people confidence to say 'look I've got IBD...'"
That 2014 flare-up was, Ryan says, "a bad one. That lasted two months." Eventually, he got the condition under control again, and was relatively symptom-free for five years, when another bad flare-up came on just days before an Irish international game. "That was bad," he recalls. "It leaves you exhausted. I had to have a steroid injection. Somehow you just get through it on adrenalin."
He has been symptom-free for 18 months now. "There's no cure but it can be managed. But any time you feel a bit of a stomach cramp, you think something's coming on. It has a big impact on your daily life. When you have a flare-up, you really plan everything you do down to a T. You make sure you're not out of your home for longer than an hour or two, if even that, and I'd need to know where the nearest bathroom is.
"Car journeys are difficult - I live in Limerick, my parents and my wife's parents live in Cork, and those journeys would have to be carefully planned." Ryan, who has two children, aged "two and two-and-a-half weeks", says that stress is probably his greatest trigger. "Physically, but also mentally - the constant need to perform, that can get to you."
In fact, "lockdown was nearly a blessing," he says with a laugh. "I could recuperate, get the body right. I had a few injuries as well. So a break was good. "
How does he see the future? "I've had ulcerative colitis for nearly 10 years now. It'll be there for a long time. It will have to be managed, and that's the case for most people, for the rest of their lives. After rugby, maybe I'll take a very stress-free job and hope that I won't need as much care, that the flare-ups won't come. Maybe I'll be a lighthouse manager or something!"
What is IBD?
Dr Anthony O'Connor, consultant gastroenterologist at Tallaght University Hospital explains: "IBD is an inflammatory condition of the gut. It's chronic, meaning lifelong, and we don't really have a cure for it. Some 40,000 people in Ireland have been diagnosed with IBD.
What happens is the lining of the gut becomes inflamed. There are two major types: colitis which affects the colon, and Crohn's disease which can affect any part of the digestive system, from the mouth down to the bowel."
Symptoms, Dr O'Connor says, "can vary. Lots of patients will have diarrhea, lots will have abdominal pains. Fatigue is one of the symptoms as well. People can become anaemic, they can bleed, there can be extra-intenstinal manifestations, and problems that can occur in other organs, including inflammation in the eyes, the joints."
Is it relatively easy to diagnose? "No, it can be difficult to diagnose. A recent Canadian study suggested that the average patient can wait up to nine years for an accurate diagnosis. Symptoms of IBD can be similar to symptoms of IBS. There are blood tests that can detect the presence of IBD but no blood test to confirm it. The best test for IBD is a colonoscopy. Sometimes we don't find it with a colonoscopy, so we have to do other tests and scans."
Primarily, Dr O'Connor explains, IBD is a disease of the immune system. "What's happening is the immune system is attacking the gut for reasons we don't understand. What we think is you inherit a set of genes that put you at risk of the condition, and then something happens to cause your immune system to think that the normal friendly bugs that inhabit your colon are invaders, and try to attack them."
In terms of management of symptoms, "the two types can differ a bit. Those with Crohn's disease, about two-thirds of them will require an operation at some point in their life. The operation won't cure the IBD, but it can come to the stage where a section of bowel is so inflamed it has to be removed. Of those who have ulcerative colitis, about one in four will have surgery. The majority of patients can be managed with medication for the majority of the time. Steroids and anti-inflammatories can work effectively, although many patients will require immunotherapy, to stop their immune system attacking the bowel."
What about lifestyle treatments? "There are some dietary things that help - curcumin (the active ingredient found in tumeric), aloe vera gel and probiotics can all help. But for most people, medication is required." There are also trials on-going into microbiome transplants, that may be interesting: "There is some promise there, but it's early stages, and we are a long way from recommending this to patients."
There are, Dr O'Connor says, "significant dangers associated with under-treating the disease. It can lead to an increased risk of colon cancer, surgery and the need for steroids - medication we try to use as little as possible."
One of the most common symptoms, and one that troubles patients the most, is fatigue. "The level of fatigue that a patient with IBD in remission can experience, is comparable with a patient who has finished a six-week course of chemotherapy," says Dr O'Connor. "And that's in remission. Doctors can be bad at dealing with fatigue," he admits. "Many patients with IBD don't feel heard when they talk about their fatigue. It's a big problem. It prevents people from reaching their potential, academically, in their careers, in relationships, and financially."
There is also a mental health component. "In terms of cause, there's a lot we don't understand, although anxiety can be a trigger for flare-ups of IBD. But we know patients who have IBD tend to have higher rates of depression and anxiety than the general population."
This, he says, is where Gutcast comes in. "As doctors, we're good at treating one aspect - deciding on medications for example - but there are lot of other things that you would like to have access to, such as a dietitian, a psychologist, and we don't.
"Gutcast fills the gap. The content is very patient-driven; it's what IBD patients want to know. It touches on fatigue, sexual function, the psychological impact, the financial burden, exercise and more."
The first three episodes of Gutcast are available now and a new episode will be released every Monday for five weeks. Available on iscc.ie as well as on Apple Podcast App, Google Play Music and Spotify