‘People have concerns about accessing care’
abdominal pain and fatigue but thought she was just run down and tired. Shortly before her diagnosis she began getting recurring mouth ulcers and blisters on her eyes.
She was regularly at her GP’s surgery with her symptoms but no cause was identified.
It wasn’t until her abdominal pain got so bad that she had to go to A&E at her local hospital that she got her diagnosis.
‘I had a perforation on my small intestine and I had abcesses on either side,’ she says. ‘I was quite unwell so when I was told at that point I had Crohn’s disease, the first thing I felt was relief.’
But then the enormity of what was happening hit Amy about three months after diagnosis
‘When you are in your 20s, you are thinking about your career and travel, and to be landed with something in relation to your health I suppose stops you in your tracks. At the start I was relieved that I finally had an answer and I was positive about the diagnosis but then it was sinking in that this was going to be with me for the rest of my life and what would the future look like for me?
‘I was going to be on medication for the rest of my life and quite honestly I was the kind of person who never took a painkiller for a headache. Taking medication was a huge adjustment for me so it was quite difficult.
‘I found three months later, I just couldn’t stop crying. I got in touch with my IBD nurse and my team and I was lucky enough that in the hospital I was in, there was a psychologist in my unit.
‘I was lucky enough to go to her for three months for cognitive behavioural therapy and it gave me fantastic coping skills to be able to cope with this and in a way it gave me an opportunity to grieve my health because I hadn’t been able to do that.’
Mental health is one of the topics addressed in the Gutcast podcasts, which also include inspiring stories of those with IBD who are also sporting stars and influencers.
‘For me as the host what I always had in my mind when we were recording the episodes when I was in hospital in 2019 a lot is happening — your medical team is there and your family are visiting,’ says Amy.
‘But when the medics have gone home and visiting time is over, you are lying in bed processing everything that is happening. You go online and look up Dr Google but quite often the information you find is not always reliable.
‘With Gutcast we have direct contact with healthcare professionals but we are also highlighting the real-life stories of people who have been living with IBD and are doing well.’
Dr O’Connor is one of those who is contributing to the episodes.
‘IBD has an impact across so many different domains of your life and I guess when people come to see their doctors the appointments can be quite medically focussed,’ Dr O’Connor says.
‘When you are initially diagnosed, it can be hard to wrap your head around the impact it is going to have on your life.
‘So we are hoping the podcast will have a good impact on people who are recently diagnosed who can listen to it and get some of the information that they need.
‘Also it will address some of the issues that they maybe haven’t discussed with their doctors and nurses.
‘It is a podcast people can turn into at their leisure and the most important thing for me as a doctor is that it is patient-driven and the content is patient-driven.
‘As someone who has Crohn’s, Amy is asking what she wants to know as an IBD patient, which is what those in her peer group want to know.’
GUTCAST will be a useful resource but Dr O’Conor is adamant that clinics at all hospitals need to be opened for patients as soon as possible to prevent the conditions of some of those with IBD from deteriorating to the point where they need hospital treatment.
‘If you think of it, the days of 30 to 40 people sitting around in a waiting room that’s just gone, you can’t do that with social distancing,’ he says. ‘So we are going to have to think of new ways of delivering care. We will hopefully see more options for people to get their care online or over the phone but it is difficult to set those things up under such pressure. I think that will be part of the solution.
‘But in terms of the clinics opening again it was all supposed to be back by June 20 in the initial roadmap but that didn’t happen.
‘It is something that has caused me a great deal of irritation — that there was a big campaign to get the private clinics open again and good luck to them, fair play, a lot of politicians were hopping on the bandwagon . But they don’t seem to be as bothered about getting the public clinics opened up again and that is a source of huge frustration.
‘Most clinics would offer good access to nurse specialists over the phone but certainly there is going to be unnecessary suffering. People are going to have flare-ups of the disease that could have been prevented, there is no doubt about that. This will lead to them being in hospital, being off work, having to take steroids, which are drugs that you don’t want to have to take for very long. It is going to have a big impact on people.
‘It seems a bit odd to me that we can go for a haircut and go to the pub but we can’t go to our doctors’ appointments when we have Crohn’s disease. We can’t attend for our scan. It seems to have completely flown under the radar that people with chronic illnesses have been locked out of their care in public hospitals.’
THE first three episodes of Gutcast are available now and a new episode will be released every Monday for five weeks. It will be available on the ISCC website as well as on Apple Podcast, Google Play Music and Spotify. To support the campaign online, use the hashtag #Gutcast and visit iscc.ie for more information on IBD supports and services in Ireland.