Diagnosed with Crohn’s at 50
Tony Bolton, currently aged 62, has gone through a journey with IBD that’s been anything but straightforward. Like many older people who have now been diagnosed with IBD, the knowledge, resources, and medicine necessary for making a clear diagnosis simply weren’t accessible for the majority of Tony’s life.
While ultrasounds were available, they only showed inflammation, whereas a tissue sample is required to make a diagnosis – something that Doctors were more hesitant to do.
Up until the age of 30, Tony suffered from regular diarrhoea, stomach pains and weight loss. While disruptive to his life, he said the symptoms up until that point had been manageable. Now, Tony looks back at photos of himself in his teens and twenties and it’s obvious to him there were times when he was experiencing a Crohn’s attack.
In his 40s, Tony went through a divorce and the stress of his personal circumstances meant that his symptoms became worse, especially the pain. At the time, the possibility of an ulcer in his chest was mentioned and he remembers the doctor saying that he “had some of the symptoms of Crohn’s” but it was only ever mentioned as a vague possibility. As the chest pain got worse, Tony continued to return to the Doctor only for it to be put down to bad indigestion.
The Diagnosis
When he was 50, Tony started to experience serious attacks around three times a year and had to be rushed to hospital on a few occasions. At this stage, Tony was put through more tests and sent to Dandenong Diagnosis Centre, where he was finally given a Crohn’s diagnosis that was classed as ‘moderate’. He says, “There’s only one way to describe an attack and that’s agony. The only thing you want is morphine and a dark room.”
Around a year later, Tony had to have 150mm of his bowel removed. After this, he was able to manage his symptoms with fulltime medication.
He says that maintaining a positive frame of mind has been key to helping him manage the disease, “My state of mind is positive, always has been. Negativity and Crohn’s don’t go well together. It’s attached to the nervous system, so if something goes wrong, it brings on a flare up. Being relaxed, stress-free and drama-free is so vital for anyone with Crohn’s. We need to live a content life. We can’t afford to have unnecessary drama.”
The Outcome
For Tony, having a definitive diagnosis has made it easier to manage his IBD, both mentally and physically. He makes more measured and considered decisions now about his lifestyle and understands the importance of adjusting his lifestyle, knowing that an attack could occur at any time.
The diagnosis has given him the opportunity to trial various medications and to rule out certain causes. He’s currently taking Stelara, which has been effective so far. He says, “It hasn’t held me back, but it has hindered me in ways. When I’m good, I’m good and when I’m bad, I’m bad.”.
The disease has meant missing out on work over the years and limiting the way he socialises. An attack usually takes him around 10 days to recover from and during that time he can’t do anything except try to relax, focus on recovering and try to eat what he can.
Three years ago, when the pandemic hit, Tony’s circumstances meant that managing his Crohn’s became even more crucial. Working as a professional entertainer meant that he was out of a job, which he says really taught him to deal with stress because if he couldn’t manage his stress, his IBD would continue to get worse.
During this time, the status of his Crohn’s was changed from moderate to severe. He was also unable to complete his course of the COVID-19 vaccination, as it had a negative impact on his IBD.
As he’s gotten older, Tony has learned to become more relaxed and aware of the ramifications of both his actions and of the disease.
Tony’s Advice
Tony says that the most crucial piece of advice he can give older people with IBD is to work on maintaining a positive mindset.
He says, “Try not to get angry, it never helps. Stay as relaxed as you can. Don’t put yourself in stressful situations. When I’m in pain, I start laughing and I say to the pain, ‘Is that all you’ve got?’. When you can get through one second, you realise you can get through the next second and the one after that and you laugh through the pain and trick your mind. Laughter is vital. Having a sense of humour is vital. If you haven’t got a sense of humour, you’re in trouble.”
A sense of humour is something that Tony has definitely managed to hang onto. He finished our chat with him by letting us know that he lives in St. Kilda and knows where every accessible toilet is in the area and exactly how many seconds it will take to get to each of them!