RECORDED Thu 20 Jun 2024
SUMMARY KEYWORDS
IBD, school, kids, colitis, diagnosis, ostomy bag, medications, hospital, symptoms, fatigue, children, toilet, teachers, inflammatory bowel disease
SPEAKERS: Megan Gilmour, Sienna, Wayne Massuger
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG telecom foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool co-founder and CEO. And this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:44
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges. And today we have with us on live and learn – Sienna. Sienna is a year nine student with a lived experience and a recent Crohn’s and Colitis Australia monthly awareness champion. Welcome Sienna.
Sienna 01:15
Hello.
Megan Gilmour 01:17
Pleased to have you here. And we also have with us Wayne Massuger. Wayne has a background in nursing and health care in public and private hospitals, as well as working for government in policy roles. He is the head of quality research and support programs at Crohn’s and Colitis Australia, which is Australia’s peak patient consumer support organisation, for people with Crohn’s disease and ulcerative Colitis. Welcome, Wayne,
Wayne Massuger 01:51
Hi, thanks for inviting me.
Megan Gilmour 01:53
It’s really great to have you both here today to talk about supporting school connections for students with complex medical and mental health conditions. So, we’re going to kick off with a question for Sienna. Sienna, if you will, tell us about your health journey and how it impacts you, and why it’s something every Australian needs to know and care about.
Sienna 02:20
So, it’s almost been a year since my diagnosis, and I’ve been in hospital five times. At the end of this 10-month period, I needed my colon removed, and it’s impacted me in many ways with fatigue, and just so many medications, that it’s mentally draining.
And I think every Australian needs to know about it, because I live in a small city, and it’s like a population of 100,000, and I know, probably over 20 people with it. And it’s really something I think everyone should know about, and more kids in schools should be aware of it, because IBD is not that rare in children anymore – the statistics are growing.
Megan Gilmour 03:14
That must be pretty tough Sienna, and I just want to acknowledge upfront your courage in agreeing to talk to us and share this, which is something that you’re going through that you’re living with. So, we really appreciate that you’re opening up about this issue for us, and what a great way to open – to let us know that this is something that Australians really need to be aware of, and peers in schools.
And so, Wayne, over to you what brought you into the world of IBD, and what is IBD?
Wayne Massuger 03:55
IBD is an acronym for inflammatory bowel disease and is sort of an umbrella term that covers the most common types of disease, Crohn’s disease, and ulcerative Colitis, which are gut diseases that affect the lining of the bowel. They have, you know, serious symptoms, such as diarrhea, abdominal pain, fatigue, often fever, and bleeding that you can see in the stools of the poo. They’re lifelong diseases; there’s no cure at the moment. So, you’ll hear us talk about IBD or sometimes we’ll call it Crohn’s or ulcerative Colitis, which are two of the more common diseases in that group.
Megan Gilmour 04:46
And thanks, I’ve learned something already.
Wayne Massuger 04:50
And the second part of that was why did I come into this world of IBD?
Megan Gilmour 04:56
Yes, why did you come into the world of IBD, which actually, in an earlier email, you mentioned to me often gets confused with IBS.
Wayne Massuger 05:07
Yes, IBS is irritable bowel syndrome, which also affects the gut, can have some similar symptoms that crossover. But it’s quite a different disease. It is related to food, it’s not chronic long-term, lifelong. So very different disease.
Megan Gilmour 05:29
And so, what do you bring you into the world of IBD?
Wayne Massuger 05:33
Yes, so I’ve got a background in health care working to try and innovate so that people with chronic diseases are less likely to need to come into hospital – to try and avoid coming into hospital. And that’s usually by promoting healthy behaviors and healthy management of disease. Or, in the case that they do need to come into hospital finding different ways for that to happen, and sometimes that’s with different technology or having that technology in the home.
Megan Gilmour 06:06
So, reducing hospital stays?
Wayne Massuger 06:10
Yes.
Megan Gilmour 06:12
I guess getting all those great gains of healthcare that we’re seeing across time and improvements in health care and innovations.
Wayne Massuger 06:22
Exactly, and I thought, you know, that the area of inflammatory bowel disease was an area where those sorts of models we sometimes call chronic disease models of care could have great effect, and there’s plenty of room for improvement in that area.
Megan Gilmour 06:41
So, I guess we could say that you also have a lived experience through your work in hospitals as a health care professional.
Wayne Massuger 06:52
Yes, that’s right, and at Crohn’s & Colitis, we’re the peak consumer body for people living with IBD, so I have a lot of contact with people like Sienna who are living with either Crohn’s or ulcerative Colitis, and are working with us, telling their stories, volunteering with us, attending events, supporting the organisation through better understanding of IBD and various events for youth and adults.
Megan Gilmour 07:23
Yes, amazing work. So, people probably assume things about IBD. What’s the million-dollar question asked by carers when their child experiences or lives with IBD?
Wayne Massuger 07:38
They usually have a lot of questions, because, you know it’s not a common condition, there’s probably around about 100,000 people in Australia with it. So, not a lot of people know a lot about it. The questions from parents or carers, with young people with IBD are often around what the future is going to look like for their child or those they’re looking after, because it doesn’t have a cure, are they going to be sick for the rest of their life – what can be done? And then even understanding that there are treatments, those necessarily have side effects, and are they side effects that will affect our child over their lifetime? So, they’re sort of real concerns around that, that pop up first for parents.
Megan Gilmour 08:33
And one more question before we get back to talk to Sienna and get her perspective. What’s the most important thing that you want those families and young people to know?
Wayne Massuger 08:48
Look, I’m stealing words here, but there’s never been a better time to have IBD. And what I mean by that is that our battle with IBD has come a long way in the past 15 and even 10 years. So, with the right multidisciplinary care and the right treatments, people and young people can live with IBD without too much impact on their life and should expect to get to a point where they can participate in all the things that everyone else does in the community and live a relatively normal life. That’s my message, that people like Sienna should be able to do all the things that kids do with the right treatments.
Megan Gilmour 09:33
That’s fantastic. Thank you. And Sienna, knowing all that, you know, what’s your biggest hope for kids navigating IBD?
Sienna 09:42
So, I have two, biggest hopes, I guess, that more drugs become available among the youth because I’ve needed medication that are only approved for people older than the age of 18. I was on Vedolizumab, which is not generally for minors, but thankfully it was accepted for me, and it didn’t work after I was on it for like six months, but it didn’t really do anything. I was potentially going to go on Stelara, but then they decided surgery was better and that’s also pretty much the same case with that.
After surgery, there were talks of me going on medication called Rino, which is like 18 plus; the youngest person to go on it, at least at the Royal Children’s Hospital, I think, was 16, and I’m 14. So, they were really unsure about me using it. They contacted the company. They said I could use it if I needed it, but the side effects are really risky, there’s lots of like, side effects like cancer, you can get really burnt easily. So, I was also really unsure about going on it. Infliximab failed for me, and a lot of them aren’t approved by the TGA, by the government.
And I just wish children had easier access to that, and especially diagnosis, because I know, especially with young girls (thankfully it didn’t happen with me but my symptoms were a bit more severe) they are sometimes denied diagnoses, because they get told it’s in their head; it’s an eating disorder, because they’re throwing up and stuff. I know because my mum has it.
And yes, Crohn’s disease, it’s come a long way in this research, my mum got diagnosed 21 years ago, and back then people would assume she had an eating disorder, but she didn’t, it wasn’t in her head.
Megan Gilmour 11:44
That’s important to know.
Sienna 11:47
She’s been on Humira for 10 years. I didn’t get that. And it’s really difficult for children. They really try to push everything in their system before they go, ‘Hey, you need surgery’.
Megan Gilmour 11:59
Yes, well, that sounds like a really complicated protocol that you’ve engaged with there in terms of drugs and other things. Thank you for sharing with us the challenge, I suppose, with medications that are made for adults. And acknowledgement there to your mum.
And the other important point was this idea that, before you have a diagnosis, that people can have ideas about what you’re saying and put their perceptions on that which is difficult, and I imagine adding insult to injury in a way.
Sienna 12:44
It does and it also impacts mental health. And it just really just sucks. I also wish there was more mental health access, like specific stuff for people with IBD, because it’s not really there.
Megan Gilmour 13:07
Yes, yes. And this is something that we hear from children and young people with any type of chronic condition is the effects on mental health and perhaps you’ll cover some of those as we ask some more questions. So, what are some of the common and perhaps frustrating misconceptions about IBD? And how does this impact you? So, you’ve touched on it there? Is there anything else you’d like to add to that?
Sienna 13:39
That “it’s not that bad – it’s just a pooping disease”. It actually impacts the whole body, like the skin, eyes, joints, kidney, liver. It’s so much more than that, it can include fatigue. I am still extremely tired, and I’m not on any medications at the moment. And another one is that diet causes Crohn’s or it’s your fault, you are too clean.
You can’t really stop Crohn’s disease happening, it just kind of does. There is some evidence, though, that it happens in developed countries more often, but that doesn’t really mean you should avoid developed foods. A few months ago, I actually saw a gastroenterologist on the TV, and he was saying, “if you don’t want Crohn’s don’t eat the Western diet …”, and that really angered me because diet doesn’t cause Crohn’s. Don’t avoid foods!
Megan Gilmour 14:39
You’re so articulate. I just want to celebrate you once again, also for your incredible health knowledge and the way that you understand your own condition and are able to communicate that in this call – I will call that science translation, where you’re just being able to put it into these terms where people can hear it, can understand, and can really relate to what you’re saying. So, thank you again, Sienna, and Wayne.
Sienna 15:14
You’re welcome.
Megan Gilmour 15:15
How many Australian children and youth are living with IBD, now?
Wayne Massuger 15:19
Sure, there’s no registry of people living with Crohn’s and Colitis or inflammatory bowel disease in Australia, so we don’t exactly know. But the studies that have been done indicate that there’s probably about 100,000 people living with IBD, and amongst those, probably 8 to 10%, are under 18 years of age. So, we’re probably looking at 8,000 to 10,000 people in Australia, who are children or young adults.
Megan Gilmour 15:50
That’s still a big number, isn’t it?
Wayne Massuger 15:52
It is. Yes.
Megan Gilmour 15:55
Is there a risk of delayed diagnosis, or are most cases picked up easily? I think I heard Sienna say something about that earlier.
Wayne Massuger 16:04
Yes, that’s a really good question. A lot of people are diagnosed younger in life, so 8 to 10%, under 18, but then moving through from 18 to 35, a lot of people get diagnosed with the disease in that age group as well. So, you can think of it – to some degree – as a young person’s chronic disease, compared to other things like emphysema, or skin cancers, or things that tend to happen later in life, for many.
People live with inflammatory bowel disease for a long time. So, for Sienna, it shouldn’t have any limitation on her length of life, but she will live with it – because she’s been diagnosed so young – for a long time.
Megan Gilmour 16:59
Yes.
Wayne Massuger 17:01
But in terms of being diagnosed, yes, the symptoms that happen, the gut symptoms and the abdominal pain, they’re also common to a lot of other conditions that you can think of, so gastro, bacterial and viral infections, gynecological issues, and some cancers have symptoms. So, it can take doctors a while to isolate it to being IBD. And the only definitive test for is a colonoscopy, which is, you know, no fun to have. So, they don’t jump to that as the first option.
But I am pleased to say that these days there is something called a fecal calprotectin test, used in combination with other blood tests. It’s not invasive and it gives doctors a really good indication of whether there’s a higher likelihood of inflammatory bowel disease. So that’s a test that we want to get more and more knowledge about, to GPs, to try and make diagnosis quicker, because it can take quite a while for people and it’s very frustrating.
As Sienna said, sometimes their symptoms just aren’t validated, you know, they sort of say, “Oh, yes, you know, some abdominal pain or fatigue, or loss of appetite, or maybe an eating disorder”, you know. She’s absolutely right that these things happen, that’s the experience of many people. And so, we want to reduce that, to get a quick diagnosis.
Megan Gilmour 18:38
Yes, thank you, and hearing again what Sienna was saying earlier about not being believed, this can also add to the anxiety of the symptoms and bring in those mental health side effects, I guess.
Sienna, what kind of complications do kids with IBD face?
Sienna 19:06
So statistically, if you’re diagnosed as a child, you could be an adult, but even if you’re still diagnosed as a child, you have a higher risk of surgery. And especially in adolescence, when you’re kind of trying to fit in, you can have lots of insecurities with your body image, like scars, your ostomy bag, I know that I have one but not many kids would. For some, stretch marks from weight loss and or gain.
Kids with IBD have a hard time getting all the calories and nutrition they need because the inflammation, especially in the small intestine, can stop your body from absorbing really important nutrients like iron, B12, and some may grow slowly or start puberty later than usual. I know mine just completely stopped when I got sick.
Megan Gilmour 20:05
Wow, again, you have really got that knowledge and understanding and it’s so wonderful that you can bring it into this conversation for others to learn about and understand more. And that leads us into the conversation about school.
So, Wayne, what’s the current population of school aged children with IBD?
Wayne Massuger 20:31
Look, it is fairly uncommon in the under-five age group – it does happen, it can happen at any time from birth, really – but there’s a small, very small percentage of under-fives. Really, the group that I’m talking about, the 8,000 to 10,000 people under 18, most of them will be school age really.
Megan Gilmour 20:55
Yes, and I guess that the onset can happen at any time across the person’s school life?
Wayne Massuger 21:03
Absolutely it can. It does increase as you approach 18, so that a higher number of people are diagnosed in the 14 -18 age group as they move up. But yes, it can happen at any time.
Megan Gilmour 21:19
Yes. Sienna let’s talk about siblings and peers of kids with IBD. How are they impacted by having a sibling with IBD, or a friend or classmate with IBD, and what should we be across?
Sienna 21:36
So, I have a brother myself, who doesn’t have IBD. I don’t know too much of how he thinks. He’s turning 16, so he is quite reserved, but he has missed a lot of time with my mom, and he’s watched me be so sick for so long. But he’s very sweet. He reminds me about my medications when mum’s not there or things like that. I would imagine he would feel alone, though, and lots of kids are in his position. But again, I’m not sure exactly about him.
I know at school my peers have been doing everything without me. It felt like the world kept spinning without me. I came back and no one knew how to treat me. It was odd for me. And then I had rumors going around school that I dropped out, because I wasn’t there for so long, and how sick I was. People are still trying to adapt to me being there, and my friends have built such strong relationships without me being there. It’s really hard.
Megan Gilmour 22:43
Yes, that would be really hard. And, again, we hear this a lot from kids in, not the same circumstances as you, but in the same experience when you have a chronic condition or health condition, and it takes you out of school. That doesn’t necessarily make it feel better. But you’re not alone, there’s a lot of people also who have that circumstance, and it seems to be quite a common thing, which is why we’re having these conversations. We want teachers and schools and classmates to understand what it’s like to live with a condition, like for example, IBD.
So do kids with IBD miss a lot of school, in your opinion? Or you could tell us about you if you like, but we’d love to hear from you on this.
Sienna 23:42
Yes, I know a few other kids with IBD. We do miss school a lot I imagine because of being in hospital with infusions like Infliximab, Vedolizumab and there’s heaps of others, treatments, appointments, flare ups, or fatigue. The list goes on. I’ve missed at least three terms worth personally. It’s horrible.
Megan Gilmour 24:10
So was that a block of time, then you missed school often, so going forward you’re missing days here and there. Is that how it’s been for you?
Sienna 24:25
Yes. I was diagnosed in June last year, so it’s almost been a year. So, when school went back in July I wasn’t there. In August, I was like kind of recovering, then I was in the hospital again in August. September, I was I think, yeah, I was back there, then had to take time to recover. October, I was in hospital for almost a month and then had to take time to recover. And then I was in hospital in February for just over a month, then had to take more time to recover. And I still have days off because I’m really tired.
Megan Gilmour 25:06
Yes… that’s tough too.
So, are there any times in your school life, critical times in your school life that stand out more than others?
Sienna 25:23
I’d imagine year 9 to year 12 is pretty important. The years that you’re kind of thinking about what do you want to be? And you have your exams. I have my exams next week, and I haven’t been there. So thankfully I get modified exams, but I’m pretty nervous because I, yeah, I haven’t been there.
Megan Gilmour 25:46
Do you have an individual learning plan in place?
Sienna 25:51
Kind of. I already have modified tasks. I always kind of have because I am autistic. But it’s definitely got more modified since I haven’t been there.
Megan Gilmour 26:04
Well, I’m glad to hear that you’re getting those adjustments? And what about things like social events at school and other things like that? Do those get affected?
Sienna 26:13
Yes. I missed out on the athletics this year. I only went that day for the sausages! But I do miss out a lot at school. I don’t do sport. Not like I like doing it, but now that I can’t do it, I kind of wish I could join in. But yes, you do miss out on a lot.
Megan Gilmour 26:41
What should families and schools be prepared for at different times then?
Sienna 26:45
A plan? Like the school to support families; access to the disabled toilet, I know I had to block off the disabled toilet for anyone who isn’t disabled and doesn’t need it because people aren’t really aware of the hidden disabilities.
Megan Gilmour 27:08
When were they using the toilet?
Sienna 27:13
Yes, and the teachers had kind of claimed that as their toilet and I wasn’t happy about that! But when I got my ostomy bag, I was like, you can’t use that!
Megan Gilmour 27:24
That’s also a practical issue, isn’t it?
Sienna 27:28
Yes – just people using the wrong toilet, it just isn’t right! I also had a card pre-diagnosis, and I still use it in case I need to change my bag. I had a card so that if I needed to go to the toilet teachers couldn’t deny it, no matter what, even if it was like two minutes from the bell. They had to let me go.
Megan Gilmour 27:52
Yes. Is there anything else that comes up for you or that you’d like to say on that question about what school should be prepared for at different times?
Sienna 28:02
I like another accommodation, which is pretty good – and I think a lot of kids should have this plan in place, a spare pair of clothes if you do have an accident. It is really handy. And I know it seems embarrassing, like, “oh, that’s only something little kids do”, but no it’s an accommodation.
Megan Gilmour 28:25
Yes, for sure. And let’s just remind everybody who’s listening that what we’re talking about is just a normal human function here, and yet it can be sitting right at the intersection of a huge amount of discomfort for people to talk about. So, I’m really glad that we’re getting to some of the detail of it.
Wayne Massuger 28:47
Yes. Another that I didn’t mention is urgency. And that’s sort of the cause of some of the, I guess, actions that Sienna is talking about to get herself organised in case she experiences urgency to go to the toilet. And so that can mean access to the toilets, the disabled toilets, great for that, but it can even be things like where she sits or positions herself in the room to be able to get out and not have 20 people in the way.
And the thought of urgency can be sometimes limiting, in that “well maybe I won’t participate in this activity, that outing for the day on the bus, or the camp or the sporting event, because if I need to go to the toilet quickly, will I be able to. So that uncertainty can really limit people in what they can participate in and create a bit of anxiety around that when they’re in school or out at the shops, or anything like that.
Megan Gilmour 29:52
So, is part of what Crohn’s and Colitis Australia do is provide young people and families with this information about how to plan for and how to overcome some of these barriers that might prevent participation or create a feeling of unease or anxiety even?
Wayne Massuger 30:19
Yes
Sienna 30:20
Yes. Another thing I forgot to add with the social events, I couldn’t go to my year nine camp. It’s a Life-Ed camp so you have to do lots of survival skills. And that just wasn’t beneficial for me, either with all my medications I had at that time. I know lots of kids might have wanted to do that, but personally, I didn’t want to, but it’s just something that it’s like, oh, I can’t do this because of my disability.
Megan Gilmour 30:56
Yes. So, would you say, and maybe I’m skipping ahead a little bit here, but is there an alternative kind of incursion or excursion that can be set for those circumstances where you couldn’t attend, or if you didn’t feel comfortable to? Or is that that not a good idea?
Sienna 31:18
No, my school, at least, doesn’t really do that. There were heaps of kids who didn’t go but it was kind of mandatory. They kind of wanted you to do the Life-Ed camp. I couldn’t for obvious reasons. But no, there’s no real alternative.
Megan Gilmour 31:38
I wonder if that’s an adjustment schools can think about for kids who can’t participate. That’s just a thought I’m having, but it’s not about me, so I’ll move on to the next question.
What are the biggest challenges and vulnerabilities facing kids with IBD? At school? If you feel like you’ve already answered this one, we can move on, or you can go over some things again, if it’s important.
Sienna 32:05
Yeah, I think I went on this a little bit earlier. But as Wayne said: the urgency; just trying to socialise and do things I guess, without someone kind of watching or questioning you or why you’re doing something that isn’t seen as the norm, or why you’re leaving so much. It’s just, it’s hard.
Megan Gilmour 32:37
Yes, if schools could understand more about these things, and peers could understand more, would that be better?
Sienna 32:45
Definitely. I made a little Instagram, and it definitely has helped a lot with a lot of peers, seeing what it’s about. But I also know that year nine students are a little bit – just – stupid [laughter], they’re a bit ignorant.
Megan Gilmour 33:11
And do you feel like you have good social connections at school?
Sienna 33:17
No. But I never really have, it’s not just related to IBD. But I know when I do talk about it with my friends, they don’t always understand. I have one good friend; his name is Hamish. And he does seem to understand a lot more than my other friends. I know that he has scoliosis, so he actually struggles a lot with his chronic pain himself.
Megan Gilmour 33:44
Yes, it’s always that one friend can be enough sometimes, right? Just having somebody who understands and is compassionate too. For everyone who’s listening, you could be that one friend, and if everyone was that one friend, well, we wouldn’t have a problem, would we because there’d be lots of friends!
So, what was happening … I’m sorry, Wayne?
Wayne Massuger 34:11
I was just going to say on that, we’ve got some resources that I might talk about a bit later, but just specifically on this one, we have produced a video that’s on our website, and it’s called, my school friend has Crohn’s or Colitis [https://crohnsandcolitis.org.au/about-crohns-colitis/students-with-ibd/]
Sienna 34:24
Yes, I have seen that!
Wayne Massuger 34:26
The idea behind it is that teachers would play it to classes that have someone living with IBD in them. It just gives the class a bit of guidance about well, it’s just a normal condition that occurs to people and you know, normal bodily functions and you don’t have to shy away from it, have the conversations about it, you know, don’t make a joke of it. I think it’s quite a nice helpful piece of communication that can be used in schools.
Megan Gilmour 34:53
Thanks for bringing that in Wayne. I have watched that, and I do think it’s just a great example of what organisations like yours can do in this space. That would be available to your school Sienna as well.
Sienna 35:11
Yes. I think my teacher said she will share it. She’s already shared my story, but she’ll do it next term maybe. There is also someone in my school – I won’t share who for privacy reasons – but there is someone in my school who does have IBD, and they’re a very relatable and very comforting person to talk to.
Megan Gilmour 35:37
Wonderful. It’s that lived experience, its shortcuts so much, doesn’t it, when somebody knows all of the basics, I guess, and then they can just go straight to the more detailed stuff, or not, you just know that they understand.
So, what’s happening now at school to help you? And do you feel like it’s enough? So, you’ve covered some things there, and, of course, all of these questions are up to you whether you answer them or not, so feel free to give some feedback, or we can move on whatever suits.
Sienna 36:18
Yes, so the toilet, as I said earlier, it’s got a little sign that does says ‘do not use’, I made a poster next to it about hidden disabilities. Unfortunately, some kids had kind of seen it and were like ‘Ha Ha!’, And one day I went past and went to the cupboard where all my ostomy supplies were – I had to grab something from it – and I heard a kid say, ‘use it, use it!’. And I was like, ‘don’t use it!’. Yeah…it shook me the wrong way.
But another thing is with the card.
I think lots of stuff has happened, and it’s very good. I have lots of accommodations, and I’m very grateful for them. But I do think there could be a little bit more awareness around the students.
So, I have, as I just said, I have heard some pretty disgusting comments from peers. For example, someone just yesterday: They opened their Vegemite sandwich, and they said, “Is this what it looks like inside your ostomy bag?!”. And I was just like “what?!” It’s a really disgusting comment!
Because I don’t share awareness of it so that people can make little jokes in their comments! I don’t do that. I plan on telling my teacher. That was just one of the worst things I’ve heard.
Megan Gilmour 38:00
You’re full of courage, Sienna. I’m so inspired by you. I don’t want to say, “oh, you know, you’re so resilient” because that’s just not enough acknowledgement from me. But I want to call out just how hurtful that would be. Again, for teachers listening, if any peers are listening, or young people listening, to just to understand and hear Sienna’s story.
Sienna 38:40
And what I found worse about as well was that he told me maybe a few weeks ago that his grandfather has an ostomy bag! So, I’d love to hear what his grandfather would have to say about that.
Megan Gilmour 38:53
Yes, that would be good to hear wouldn’t it – to be a fly on the wall if that conversation came up!
What do you think schools could do to make it better in future? So, what’s the headline here for you in terms of could school do?
Sienna 39:06
Basically, everything I said above, like more awareness for the students and just education around it, because as I also said earlier, statistics are also growing around it. It isn’t a common condition, but it’s not a rare one. It happens more than what people realise, I think. And also, as Wayne said earlier, it’s what I like to call a zebra diagnosis, it can be also confused with lots of things. And IBS is not the same!
My beautiful cousin, she’s my favorite, but she should probably kill me if I say this, but she once said she was trying to explain to someone what Crohn’s isn’t, she said, it’s basically IBS on steroids!” And I was like, it’s not! Like, it’s completely different. Your auntie – my mom – has had it for so long. IBS doesn’t include any inflammation of the gut; the gut looks healthy.
Megan Gilmour 40:19
That’s a really good way to put it.
The work over here at MissingSchool, we connect young people to school, when they’re absent, if they want to, through two-way technology, is that something that you think would be useful for young people living with an IBD diagnosis?
Sienna 40:41
Definitely. I can’t go to school all the time, because of fatigue and stuff, and when I was in hospital, I had a teacher at the Royal Children’s Hospital, but it just wasn’t quite the same. People didn’t know what it was, people thought I dropped out, and they kind of just made assumptions. It wasn’t very nice, and – it was also a little bit funny – but it can be pretty harmful to some that don’t see it that way.
Megan Gilmour 41:16
Yes, so that two-way digital connection that’s been happening in overseas countries for some 15-20 years now, so that when you’re at home or in hospital, that you’d be able to dial into your own school and be learning alongside your peers and together with your teachers.
And a plug here for what we’re trying to do is to make that business as usual, in times of absence like this, across Australia. So, we’ll keep you posted on that.
Over to you, Wayne, I just wanted to check in with you. Is there anything else that you’d like us to know about quality of life or school quality of life for IBD?
Wayne Massuger 41:59
Sure, probably two things. I guess I just want to say that what Sienna has described there with her condition and the challenges with it are just so accurate and her knowledge is amazing!
We’ve just completed a national expert patient experience survey of young people, and also an audit of the hospital quality of care. Some of the main findings of that are that there’s a need for more mental health support that we’ve heard Sienna talk about. Access to more pediatric drugs is one of the recommendations that Sienna has talked about. Multidisciplinary care, nurses and dieticians in your team, and the need for earlier and quicker diagnosis. They are the main things that come out, and I think we’ve heard those really come through from Sienna in her story.
The second is a bit more school related. Absence from school, and from school activities – engagement in sports, and the camps and the outings – having to miss out on those can be really isolating for kids. So, anything that schools and school friends can do to keep in touch with kids when they’re away from school is very valuable, and we really encourage them to try and keep engaged with the kids that are having to miss school.
We’ve got some great resources for people living with IBD. We’ve got a special area for kids with Crohn’s and Colitis, one for teens with Crohn’s and Colitis. We’ve got an online area like a platform called Yep Online [https://crohnsandcolitis.org.au/support/youth-support/youth-empowerment-program/yep-online/] for teenagers to communicate with each other if they’re living with IBD, as well as some team camps and team fundays called Yep Fundays. So, all those things can be done. I know they are challenging for schools to do but we are able to do them. So, there’s a way around these things for everyone.
And I just want to really thank Sienna for sharing her story, which is so important to all the things we try to do and the recent supports that we’ve developed.
Megan Gilmour 44:20
Yeah, thank you Wayne.
Sienna, just to close out. What’s your call to action for IBD in seven words or less?
Sienna 44:31
I really struggled with this, but I finally came up with – don’t assume and look at valid resources.
Megan Gilmour 44:42
Uh huh. Amazing.
It’s just been such a pleasure to speak to you, Sienna and you Wayne and to hear this wealth of knowledge, experience and information. And to think that, together, we could help change the way that schools support students like you Sienna, and that the future can be much brighter.
I wonder if many of the things that you’ve recommended and talked about, and you Wayne and the resources that Crohn’s and Colitis Australia has put together, for this very thing for young people at school, can actually help a lot of kids with health conditions. There’s a lot of similarities there with overarching things that could be considered and done, so that everybody can benefit.
So, we’re at the close out of our conversation, and I do want to give praise to you Sienna for having the courage to share your personal journey. It’s such a personal thing and your knowledge and willingness to put this out there I know would be helping so many people, and you’d be inspiring so many people through your own journey.
Sienna 46:12
Thank you.
Megan Gilmour 46:14
And Wayne, your amazing work too and the work of Crohn’s and Colitis, Australia. I want to give a shout out now and say, head over to the website [https://crohnsandcolitis.org.au] to donate, to support, to give.
And you can find us on our website at MissingSchool.org.au [https://missingschool.org.au]. We’re always welcoming donations and support as well.
So, thank you for being on Live & Learn, and we will see you next time.
Thanks everyone for tuning in. Help us turn up the volume so all kids are Seen and Heard. Follow along like share comment or leave us a review because we love hearing from you. And if you want to donate, head to missingschool.org.au, because every dollar makes a difference.
View the episode here.
