“It’s important to know when you’re not okay, and to seek help during these times.” – Jackie’s story
I’ll be running the Newcastle Marathon (yes, all 42km) to raise money and awareness for Crohn’s & Colitis Australia, a charity close to my heart. But this run isn’t just about fundraising… It’s for everyone living with Crohn’s disease who would love to participate in something like this but simply can’t.
For me, living with Crohn’s has meant colonoscopies, endoscopies, fistulas, setons, abscesses, three surgeries in the last 12 months (with a fourth on the horizon), blood tests every 12 weeks for the last nine years, immune suppressing medication and a bowel resection that means my body will never absorb B12 the same way again. But here’s the thing… I still have it easier than so many others. That’s what’s pushing me forward. Because being able to move your body the way you want to is a privilege – one I don’t take for granted.
Support Jackie as she runs the Newcastle Marathon!
I was officially diagnosed with Crohn’s disease in 2016. The reason why I say officially is because, for about 10-12 years leading up to that, I had a lot of stomach issues. I was overseas and had been hospitalised because of this. I was always so fatigued in my early 20s. In high school, I had an abscess that needed surgery, but I wasn’t diagnosed with IBD then. There were a number of things that were happening to me before my diagnosis. I saw a gastroenterologist in 2012-2013, and he said there was nothing he could do, and there was no diagnosis that he could give me.
It wasn’t until I saw a lot of blood in my stool that I identified that the situation I was facing definitely wasn’t normal. After investigation, they found a lot of ulcers in my stomach in 2016, and there was enough evidence to diagnose me. The delayed diagnosis emphasised the importance of knowing my own body, advocating for my rights and speaking up when something isn’t okay.
So many times, I was told by doctors that there was nothing they could do, but I didn’t feel right within myself.
I was 26 at that time, and was put onto an immunosuppressant.
I carried on as normal, but I was still fatigued and getting stomach cramps. I remember in 2018, whenever I’d eat, I’d end up vomiting. I was going to the bathroom a lot. I saw a doctor, who told me that this was just part of having Crohn’s. In 2019, I had a complete bowel obstruction. I presented to the hospital and was there for two weeks. At my lowest point, I couldn’t eat for 10 days. I had a full bowel resection where they took 30cm out of my bowel.
It was only after I recovered when I realised how sick I was. I could eat and not experience cramps immediately after. I wasn’t running to the bathroom as much, and I wasn’t as fatigued. All of these things improved the quality of my life massively.
I was lucky in a sense that my best friend was diagnosed with Crohn’s disease in high school, and she had a full bowel resection after year 12. It meant that I was familiar with the disease, as well the bowel resection and recovery process. I remember visiting her when she was in hospital, and she did the same for me. As scary and overwhelming as the whole thing was, I had someone to turn to. I could see someone who had gone through it and had come out the other side. It’s why I’m always open about my journey. Because I know that not everyone is in the same position where they have a strong support network.
I ended up changing gastroenterologists as I felt like he didn’t properly acknowledge my symptoms. The bowel resection was very traumatic for me – I wasn’t able to eat and felt like I was wasting away – and he basically said, “in hindsight we could’ve approached it differently.” I don’t think he properly addressed what I’d been through. I remember him saying to me after a colonoscopy in 2017-2018 that he couldn’t get the scope all the way through because there were so many ulcers in my bowel. I think that was a warning sign early on that wasn’t properly recognised.
I have a lovely gastroenterologist now, but I do feel like I’ve been mistreated at times over the course of my journey.
I’ve had two pregnancies and two caesareans, guided closely by both my obstetrician and gastroenterologist, due to the side effects of Crohn’s disease and the potential impact it could have on my body during birth and recovery.
I was fortunate to have received support from my friends and family following my diagnosis. Following the resection, I had been in remission for a sustained period and was in talks about coming off my medication. Unfortunately, they found another abscess last year, and I’ve since had three surgeries in the past 12 months – including the placement of a seton. I’ve got a fourth surgery on the horizon, and whilst it’s disappointing and upsetting, I am of the perspective that I’m very lucky to not have it as severely as others. I’m still able to go about my day-to-day tasks.
I’m conscious of what I eat and drink because I don’t want to get caught out. It does impact me, but it’s something I’ve learned to live with after suffering for so long
Exercise is really important for my mental and physical health.
I try to exercise every day – if not, every second day. After the bowel resection, I remember being told at the hospital how important exercise is in getting your bowels moving and working properly. That advice has stayed with me. I enjoy running in particular. With two young children, it’s nice to have some alone time.
I’m currently preparing for the Newcastle Marathon, which is my first marathon. About 10km is usually my sweet spot. I live right near the beach, which is a nice place to run. I initially signed up for a half marathon last year, before having to be hospitalised and having two surgeries in about six weeks. It put those plans on the backburner.
However, I was feeling good at the end of last year, so I decided to do sign up to do full marathon in 2025. I’ve never run past 20km before, but my training is going well and the amount of money we’ve raised for CCA has been awesome! I’d like to hit the $5,000 mark, but we’ll see, so stay tuned!
I’m really fortunate that a lot of my friends and family are aware of IBD.
However, I don’t think they understand how all-consuming it can be. I take medications every day and get blood tests every 10-12 weeks. I take a B12 supplement, because the part of my bowel that was removed is a main part of the body that absorbs B12. It’s so much more than just needing to go to the bathroom. It’s something that you’re regularly thinking about and making considerations for.
For me, it’s so important to have people that I can turn to -to know that I’m not alone. I’d advise people to lean on their support network whenever they can. I’d also suggest doing your own research to remain informed, and to advocate for yourself. It’s important to know when you’re not okay, and to seek help during these times.
