“It’s such a horrible disease – but for it to have a reason or purpose, I think is great. I think volunteering kind of gives it that purpose. ” – Adam’s story
What was your journey with IBD like?
I was diagnosed when I was 12. At the time, I weighed about 30 kg, and I had an identical twin brother who weighed 50 kg, so there was quite a noticeable difference. Mum and I saw about five different doctors before anyone finally diagnosed me with IBD. That process seems to be a common story.
It was tough. The main thing was the weight loss, so when I was in Year 6, I weighed nothing. And I was always small. And I think it delayed my puberty quite a bit as well, so I was about 14 or 15 when I eventually hit puberty. I also missed out on a fair amount of school, and I was in hospital a couple of times. But yeah, just having to catch up, having to do the study. However, I ended up with a pretty good grade, and getting into uni – I was happy with that. So, it’s definitely possible.
I’m currently on Rinvvoq, I’ve been through Infliximab and Humira, so I am now on my third medication for Crohn’s. The first treatment I started off with was the Sustagen drink which I had for about two months.
The first doctor I went to diagnosed me with haemorrhoids and sent me home. I ended up drinking prune juice for six months, which was a nightmare. The next few doctors weren’t much better. Some noted things weren’t quite right, like the blood might not be great, but they didn’t dig any deeper.
Eventually, we saw a naturopath who said something clearly wrong with my stomach. That pushed Mum to go back to a GP, and we really advocated for more thorough investigation. I was really unwell at the time. I remember Mum saying, “You need to act sick so they actually do something.” Finally, one GP asked about family history, and we mentioned Dad had ulcerative colitis. That was when things finally moved forward. I was referred to a private specialist who ran an MRI and a colonoscopy, and then we got the diagnosis.
From there, I was referred to Dr Zubin Grover and the team at RCH. Once I was in their care, everything really took off in a good way. The care was great. I was seeing Dr Gul for my medication management and attended regular appointments, initially every two months, then every six, and now I’m in the adult hospital still on six-month check-ups. I only ever saw a dietitian once, but my diet was already quite good, and I’ve responded really well to treatment, which I feel very lucky about.
How was your experience volunteering at CCA’s recent Perth Youth Fun Day event?
This was my first volunteer role. I definitely want to do more and am in conversations to join one of the online support groups.
Speaking with parents and the kids, it seems like things have improved a little bit. Diagnosis-wise, there were still a few stories like mine where it was like four doctors, but there were a couple that were like, we saw a doctor and they asked about family history and then diagnosed us quite easily, which was good. And then talking a lot about what it was like living with Crohn’s. Or a couple of them had UC. It was good talking to the parents as well. I think it was maybe a bit more helpful talking to the parents, because a couple of the kids were quite young, and the parents obviously have a bit more idea of what’s going on. It was quite hard at times, I think there was a positive outlook for quite a lot of the kids, but I mean, some of them were really young. Some of them were I think three four was the youngest diagnosis. So they kind of just stuck with Mum and Dad, so I didn’t really get talking to them. I don’t even know how they went about getting diagnosed, to be honest.
What was your motivation to become a volunteer?
The motivation came from the fact I do know quite a bit about UC, as I have a background in biomedical science at uni, and I want to be working in the field of Crohn’s. So, I kind of felt like I had something to offer with the kids. I know when I was that age and it was all like getting diagnosed and stuff, I was like, oh okay, like do this, talk to this person, do that. And all the information I was getting was from doctors. And I remember being like, this is great, but there’s so many little things that the doctors — obviously, without living with it — don’t understand. I felt like I had that kind of information to pass on. I wanted to do it one-to-one, see them, and help.
For example, with the colonoscopy the drink you get beforehand is always the absolute worst. I found it so awful. I’ve always found that brushing your teeth beforehand and then drinking it through a straw and brushing your teeth straight after makes a big difference. So, it’s that kind of thing like a doctor wouldn’t know that, but if I could tell them that and it would help them just when they’re doing their prep for a colonoscopy, I mean, it would be worth it.
What message would you want to send to others who are thinking about volunteering for CCA or thinking about joining a support group?
I think you should absolutely do it. I mean it’s always nice to give back, but what you get from the experience is as much as what you’re giving to it. Being able to help the kids makes me feel better about my diagnosis, and it makes me feel like my diagnosis was worth something. I don’t know if that makes sense. But it kind of gives — like it’s such a horrible disease – but for it to have a reason or purpose, I think is great. I think volunteering kind of gives it that purpose.
Do you have any advice for people who may be struggling with their disease?
There’s always going to be good days, there’s always going to be bad days. My personal motto is to roll with the punches. I mean, it’s not always going to be easy, it’s not always going to be one step and you’re better. Sometimes you do just have to kind of sit with that. And it can be horrible, but I think a lot of my stuff is the stuff surrounding Crohn’s — so my Crohn’s has been really bad, but since I’ve been in remission for a couple of years now, which is great, but now it’s just a lot of random stuff. Like, eczema and stuff because of the Crohn’s. And yeah, so it’s always just — you just got to roll with the punches sometimes.
And if it’s a bad day, it’s a bad day. And you just go to get through that day, rest, go to bed, and then get up and start the day fresh.
I was saying to the kids at the volunteer day that there’s a lot of programs and special conditions offered for people with IBD in school. I remember feeling guilty about it. Like, you can take drink breaks and stuff during exams and that. I’d feel guilty for using that. But I was saying to the kids — it’s such a disadvantage going through high school with this disease. Like, take the extra ten minutes in an exam or whatever’s offered in your State. It’s absolutely worth it. It’s not going to make up for your disadvantage, but you’ve got to take what you’re given.
What new perspectives or insights did you gain from volunteering at the Perth Youth Fun Day?
Talking to the parents was an eye-opener. From the parents’ perspective – when I was diagnosed, and I was 12, it was always kind of a blur of adults talking.
But talking to the kids now, as a volunteer, and hearing what their experience was – I kind of learned how scary the process is. There was so much going on, and I was kind of protected from that by my mum and dad.
And kind of seeing how vital it is that the diagnosis process goes well, and how quick the movement into medication can be – and how scary that is for them. Especially because some of the medications, especially for kids with very bad symptoms, can be quite extreme like steroids.
One of the things that was really interesting was how many parents are trying to be involved in research. There was one of the parents, someone involved in genomics, and they were asking about doing a PhD. And one of the parents, or maybe it was someone from the hospital, was pushing for studies into IBD and working as a dietitian.
It was hopeful knowing that there are people advocating for it and doing research on it on other people’s behalf. So, I really enjoyed that part of the event. I want to do research as well, so it was nice knowing there were avenues in IBD and that even in Perth there were people working on it. Hopefully there’ll be some new medication or some more insights into IBD in the future.