I believe Xavier has had colitis from birth, and I’ve raised issues with GPs from early on.

I have four kids, and I knew that the quantity and type of his bowel movements were not normal. The bleeding started in January 2023, when he was about 18 months old. When I saw this bright red stuff, I freaked out immediately. We went to the local hospital to be told that Xavier had a dairy intolerance, and that we should change his diet. We waited nine hours to be told “go home –don’t feed him so much dairy.”

But his symptoms continued. We’d see blood in his stool each week. I’d tell my family, “guys, you can’t give him food he can’t eat.” Then, in June 2023, when he was turning two, he had a birthday party. Two days later, he was so unwell. We thought it was maybe because of what he ate, but the following day, he started vomiting. The day after, he was deteriorating quickly. He was feverish and wasn’t responding when we tried to wake him up.

We went straight to the ED. They admitted him for the night and put him on a drip because he was so dehydrated. They discharged him the next day, but we were back at the hospital a few days later.  We were treated like we should’ve been at home looking after him. We were made to feel like Xavier was just a kid with a common tummy bug, and that we were wasting their time. It was an awful feeling.

I was so upset while at the ED. Xavier is usually so vibrant and energetic, but he wasn’t himself. My other kids have had tummy bugs and weren’t ever this sick. They weren’t listening. Fortunately, we had a really nice nurse who spoke to the doctor and got us admitted back into the kid’s ward. They stuck a nasal tube down his nose, but the tube was designed for a six-year-old.  It made him bleed horrendously; he was so uncomfortable. The whole stay wasn’t pleasant

They didn’t do any tests. There was nothing sent to the lab, no stool test taken; nothing. We were discharged from the local hospital after four days. We were waiting until he could eat and stand. Once he stood up, they said he was fine and basically kicked us out.

We went straight from the hospital to our GP in tears, emphasising that there was something wrong with him. Our GP sent us for an ultrasound, he took a few blood tests and asked for a stool test. They quickly saw the inflammation in his nodes and stomach and – two weeks later – we were told his calprotectin levels were over 550, which isn’t normal. We were told we had to see a specialist.

We were thrilled that we were taken seriously by a GP who cared.

When we asked what this all meant, the GP said that Xavier might have Inflammatory Bowel Disease.

We had no idea what this meant. We were told it could take up to 12 months for the children’s hospital to see him. Fortunately, they saw us in two weeks. We were so surprised. The person we saw – who oversees the gastro clinic there – treated us with urgency and care. His inflammation levels were high, and his blood results weren’t good, so they booked him in for a procedure. It felt like everyone was finally on our side.

The initial advice was that it was likely polyps, and that there wasn’t too much to worry about. After the surgery, they called us into recovery and told us to take a seat. We were told there were no polyps, and they confirmed it was ulcerative colitis. Our response was relief and yet we were so worried about what this meant. We had briefly read some information on IBD and of course, you don’t wish IBD on anyone, but my understanding was that Crohn’s Disease is less treatable, and has more of an effect on one’s daily life and diet. Even still, Xavier was only two, and I questioned how we’d deal with this diagnosis. For instance, Xavier’s sisters who work in fast food and bring it home – how will we tell him that he can’t eat it? When we cook pasta in our kitchen, he begs for it. So many questions were running through my mind while sitting in recovery. We were reassured that Xavier didn’t have Crohn’s Disease and so his diet won’t be affected at this stage.

Regarding next steps, the GP provided a script for Mesalamine. You have to rip the tablets in half and dissolve them in water so he could drink it. We could do this for about a week, until Xavier realized that the medication tasted gross, that he wasn’t going to take it. He ended up in a flare and, the next month – in January 2024 – he caught Covid-19. He was sick throughout that month.

In February, they changed his medication from Mesalamine to Sulfasalazine – which was going okay – but he suddenly had a melena. He was having a great day, then at 130am, he woke up and vomited everywhere. There was vomit every 10 minutes for about an hour, before this awful black poo came out. It was horrendous. I thought that sewerage had leaked throughout the house. I let the clinic know that he had it – but didn’t think it was too serious with an email to the gastro team at 10am the next morning, and at 10:04am, I received a call telling me to get him to ED immediately!

He was in hospital for four days. They were worried he had Crohn’s and not colitis – they were going to do a colonoscopy and endoscopy but he didn’t have another Melena while in hospital and his symptoms resolved quick – his iron levels were terrible, so they gave him an infusion. He was put on steroids from March until August. They tried to wean him off them, but his body resisted, which led to another flare in May.

He’s now on Azathioprine, which he takes every morning, as well as Sulfasalazine, which we give him three times a day. We finally weaned him off the steroids. Between November 2023 and March 2024, there’d be blood in his stool every day. We haven’t had any blood since May, so we’ve had a good run. But no one listening to you in hospital is where it hurts.

I wonder what his calprotectin test results would’ve been had they tested earlier.

Even now, when we say that Xavier has IBD, people say, “that’s too young.”

But it’s not. The sooner that people are diagnosed, the quicker they can find the right treatments and medications that work for them. Being diagnosed at such a young age will hopefully make it easier for Xavier to process it when he’s older.

It was never suggested to us that we should see a dietitian or psychologist. In recovery, I asked the IBD doctor if there was a diet we should follow – they told us that Xavier would let us know what he doesn’t want to eat. Two weeks after his surgery, an IBD Nurse provided a big information pack with online resources and support – including the CCA website. Through CCA, we’ve grown our support network, and made friends on social media, especially in Perth.

Our family has always been there to support us. During our hospital admissions, they’d be there in a heartbeat and would do everything they could to keep us, and Xavier entertained. In saying that, no one in the family has had IBD, so we’re working out what we can do together.

The Perth Children’s Hospital IBD Clinic has also been awesome. They provide answers within 24 hours, and if I’m stuck in the pharmacy downstairs without a script, they’ll send it through immediately. They’re so caring, and treat Xavier like a whole person, not just as his disease.

Regarding advice for others – If you feel something isn’t right with your body or your child’s, stick to your guns and don’t back down.

You want to believe that the local hospital has everyone’s best interest at heart – but at the same time, they’re overworked and understaffed. They’re doing their best, but navigating the system can be a huge challenge.

You’d rather the medical team do all the tests and rule something out then suffer in silence and not know why you’re in pain.

I wouldn’t have known about Xavier’s ulcerative colitis if the GP hadn’t mentioned it – so don’t stick to one person’s advice.

Fortunately, with a great team and community around him, Xavier is doing great at the moment.

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Xavier and his family are taking on the Live Fearless Challenge. You can support them here!