Chris McGovern was diagnosed with ulcerative colitis in 2013. He was introduced to the My IBD Care app in December 2018. Here he describes his experiences living with IBD – and how things have changed since he started using the app.
Can you give us a bit of background to your diagnosis and the initial treatment of your condition?
I was diagnosed with severe ulcerative colitis in April 2013, and that came about after a couple of years of struggling with symptoms such as bleeding when I went to the loo, but never doing anything about properly resolving it. It was mis-diagnosed as haemorrhoids, then proctitis and despite being on an ‘elephant’s dose’ of steroids, I went downhill fairly rapidly and ended up in hospital on various combinations of anti-viral medications and fluids before I was eventually diagnosed.
Once my condition had stabilised, it was a question of finding the right treatment, which is not always easy with IBD. The doctors looked various drug combinations – including steroids – but it took at least 18 months before we found an infusion that actually made a significant difference.
I was initially treated privately through healthcare from work and ended up in front of a consultant at Bart’s hospital. He was the one who put me on the drug that changed everything. Up until that point I’d been told that my likely outcome would almost certainly be surgery. This infusion really was the last chance – so it was a huge relief when it worked.
After moving across to the NHS, I was seen every two months for infusions, blood tests and consultancy and I’ve been mainly well for the last few years, thankfully.
How have you approached the self-management of your condition?
Once you’re diagnosed, it’s a bit of a bombshell. Suddenly you’ve gone from being completely healthy and active into a shell of your former self within six months. Then there is the shock of knowing you’ve got this condition for life. So you start asking yourself all these questions: How do I go about understanding what my condition is? How will it affect my lifestyle? How can I prevent it from getting worse?
Like many people, my first reaction was to start Googling. The problem with that is there are all these forums where people are talking – but they all have their own individual ideas and unique situations. None of it is official. None of it seems to be scientifically based. I ended up finding a few journals from resources like Crohn’s and Colitis UK and that gave me a bit more confidence.
They suggested red meat and processed meat might be quite bad for me. I thought long and hard about it – processed meat is one of my favourite things! – but out it went. Alcohol was another key trigger – so I got rid of that too. These small changes to my diet have helped me feel like I’m in control of my condition.
When did you first find out about My IBD Care?
A nurse at the hospital suggested I take a look. I hadn’t ever heard of apps to monitor conditions like mine.
The core of My IBD Care as I see it, is about self-diagnosing your mood, your stress levels, how well you’ve been eating and sleeping. These are all emotional states that can affect your condition. By entering data around stress and pain levels that will chart over the course of a week, you can really start to get a picture of how you are doing and what you need to do to stay well.
What benefits have you seen from using the app?
One of the key elements for me is having a central point to log data and collate all the disparate information. The app provides daily tracking on how you are feeling and gives you a certain amount of confidence that your healthcare team is monitoring you without the need to attend hospital every two months. And that if things do deteriorate, they will catch it quickly.
Before, when I was being treated privately, I was proving feedback on my medication and pain levels to my private consultant, GP and hospital team – but none of them were sharing that information. Now I have a central resource for everything, so I feel more confident and in control. I can go to my GP with facts and collated data, rather than vague symptoms.
What is the app currently telling you about your condition?
At the moment, I’ve got a two-year-old, so sleep is at something of a premium. [Chris shows us the sleep quality feature from the app] You can see the app is telling me my amount of sleep is steadily dropping! My stress has been generally OK, but I can see that I’ve maybe not been eating so well. All of these features help to give me a clear picture of my overall health, and they give my doctors and nurse specialists data on how well my medication is working. Most importantly, the app gives me a kind of invisible safety net. It gives me confidence knowing that I am always connected to my medical team, and they can monitor my condition closely without me having to attend regular consultations.
What would you say to other patients who might be considering signing up to My IBD Care?
The app would have been a wonderful resource for me when I was lost and uncertain and Googling anything and everything. Here is a central resource with all the information you need – all scientifically validated and collated for you so you know you can trust it. The app will also give you peace of mind – and the feeling that you are not alone. There is a whole community out there who you can share experiences with and look to for advice.
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