Meet Nicole- A Crohn’s Diagnosis Becomes A Life of Advocacy

A Crohn’s diagnosis at eight can shrink a kid’s world down to fatigue, fear, and the nearest bathroom. Nicole Thornton took that same reality and built something bigger: community, advocacy, and a blueprint for how young people with IBD can lead without pretending it’s easy.

We talk through Nicole’s early health journey and the moment Camp Purple Live in New Zealand changed everything by giving her friends who truly understood Crohn’s and colitis. From there, Nicole shares how she petitioned the New Zealand Parliament at just 12 years old to improve toilet access for people with inflammatory bowel disease and other urgent health needs, and how that effort evolved into the “I Can’t Wait” campaign where busin

esses voluntarily welcome patients to use staff bathrooms. We also dig into the everyday stakes behind “bathroom access” and how stigma and public accidents can shape mental health, confidence, and relationships.

Nicole also brings a global lens from her work with the International Federation of Crohn’s and Ulcerative Colitis Associations (IFCCA) youth group, including what she’s learned about medication access, healthcare funding, and how different countries support young patients. Finally, we get into why she’s studying nursing, how small acts of care can change someone’s life, and what it takes to balance advocacy, school, work, and chronic illness without burning out.

If you care about Crohn’s disease, ulcerative colitis, chronic illness advocacy, bathroom accessibility, or patient leadership, hit subscribe, share this with a friend, and leave a rating and review so more people can find the show.

Links: 

• Camp Purple Live- Crohn's & Colitis New Zealand
• IFCCA- Youth Group
• Article on Nicole's NZ parliamentary efforts
• Story on CCNZ on Nicole's trip to Brussels  

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Transcript

Meet Nicole Thornton

SPEAKER_02 0:00

Hi, I'm Alicia. And I'm Robin, and you're listening to Bowel Moments, the podcast-sharing real talk about the realities of IDV. Sir. This week we talked to Nicole Thornton. Nicole was only eight years old when she was diagnosed with Crohn's disease, but she has not let that stop her. She's currently a board member of Crohn's and Colitis of New Zealand, and she's also a member of the Youth Council for the European Federation on Crohn's and Colitis Association. She's also an active advocate, and she petitioned the New Zealand Parliament to get access to staff bathrooms for people living with chronic health conditions as well as pregnancies when she was only 12 years old, and she continues her advocacy work to this day. Now she's studying nursing so she can serve our community even more. So we know you're gonna love learning about Nicole just as much as we did. Cheers.

SPEAKER_01 0:52

Hi everybody, welcome to Bow Moments. This is Robin.

SPEAKER_02 0:55

Hey everyone, this is Alicia, and we are absolutely excited to be joined by Nicole Thornton. Nicole, welcome to the show. Thank you so much. We are so excited to hear all of your story and all of your adventures because there are plenty of them. But our first very unprofessional question is what are you drinking?

SPEAKER_00 1:14

Oh, I'm literally drinking some electrolyte. Tropical flavored though. You know, gotta get that water in, so make it flavored. Yeah. Yeah. Yeah.

SPEAKER_02 1:24

No, I'm with you. That is, I think the only way I drink water is if it's got something in it.

SPEAKER_00 1:28

Literally. Some water drops, literally anything.

SPEAKER_02 1:32

Yeah, that'd be great. Robin, what about you?

SPEAKER_01 1:34

I have a smoothie. I have a protein smoothie. I have some Greek yogurt and some strawberries and some spinach and some plant protein. I use powdered plant protein instead of like a whey protein and some pomegranate juice.

SPEAKER_02 1:48

Oh yummy. Well, I got real excited thinking that it was morning for Nicole. And so, but it's not. It's actually noon. But so I made a tequila sunrise because I'm like, yay, cheers for the morning, but you know, cheers to the midday instead. So cheers to the midday. All right, cheers. Cheers. Nicole. Again, we are so excited to hear your story. So, next question for you is tell us

Diagnosis And Finding Camp Community

SPEAKER_02 2:09

your IBD story. What brought you into our community?

SPEAKER_00 2:11

Yes. So I have been so privileged to have such an amazing IBD journey throughout my life. I was diagnosed at the age of eight. But honestly, I can only remember having issues with my bow when I was younger. I had my appendix removed, and then we thought it was Kawasaki disease. And then I was finally diagnosed with IBD. And I remember going to Camp Pipple Live, which is New Zealand's camp for children with IBD. Right. It was the very first camp. And I was in the youngest group at the age of eight. And I made such great lifelong friends. And it was really my first taste of being surrounded by a community of people living with the same condition I had, going through the same things I was going through. And I honestly, like, it's just such a like fundamental part of my childhood is Camp Purple Live. And so every year I would go to camp and camp and camp again and again and again, all the way up until the age of 18 when I literally could no longer go. And so I'm lucky enough to actually return this year as a camp leader, which is such a full circle moment for me, I feel. So it'll be really exciting to go back and, you know, look after kids who were in the very exact same boat I was, you know, when I was eight years old. But yeah, so when a couple of years down the line at camp, one of the members came up to me, Dr. Richard Stein, and he was like, you know, would you be keen on, you know, starting a petition, like petitioning parliament? And at the age of 12, I didn't even know what a petition was. I barely knew what parliament was. But like I was just so in awe of camp that I was just like, Hell yes, you know, anything to raise awareness, anything to help support this space because it honestly was my life. I was like, absolutely, let's do it. And so I remember returning home from camp and I was like, Mom, guess what? And she was like, What? And I was like, I'm petitioning like parliament. And she's like, What? And I was like, Yeah, yeah, yeah. Like, you know, I'm gonna go and speak to the prime minister. And she was like, Why have they been feeding you? Like, what have they got inside your head? And I was like, no, honestly, mom's gonna be so cool. So, anyway, she told me more about what that even meant. I literally had no idea, but the whole process started. And so I was basically petitioning parliament, seeking access for those living with inflammatory bowel disease, to have access to staff toilets when no public ones were available. And I just know that this was something I was really straight off the bat passionate about because my coronas had been so severe that I honestly was like, you know, homridden. I would not leave my room. There's so many times, like endless number of times that I can recall having an accident in public. I would always have spare undies on me. I would everything. And it's just so humiliating. And it's it sucks because it doesn't just affect your like mental health, it it's literally also like the friendships and relationships you have with others because you genuinely just you feel so socially isolated. So I yeah, I was really passionate about this. And so at the age of 12, went and petitioned parliament, and they basically they were on board with the idea, they did love it, but it ended up turning into more of a campaign just due to the fact that it was a whole expenses cost with, you know, businesses having to refurbish their bathrooms to be appropriate for, you know, and from the public to go and use. But honestly, it was kind of a bit like you know, we were kind of a bit pissed off about it because it's like, how can you tell? You know, I would hope that your staff members that you've employed has a bathroom decent enough to go and, you know, use um without having to, you know, like that you shouldn't have to do any renovations for us. We're actually just looking to go because there's we can't hold on. But yeah, so I then turned it into the I can't wait campaign. And so it was the exact same concept, but instead it would be like voluntary from the business owners. And I would go around and would go give them some stickers which said, like, I can't wait. And it basically, if you're a patient with IBD or if you're pregnant, just disabled or elderly, you could honestly walk past the street, see the stickers on the business doors, and be like, okay, I know I can go to this business and not be denied access to a toilet. And I think that kind of still really like, you know, it gets across the same point. And so then from there, I started going around different cities in New Zealand, going to their councils and different businesses and just trying to like spread awareness on the disease and whatnot. And yeah, so that's kind of still going. But I think with, you know, just life in general, it's kind of just been a little bit more on the back burner as I've kind of branched off into different areas

Petitioning For Toilet Access

SPEAKER_00 6:52

of my journey with IBD.

SPEAKER_01 6:54

I'm gonna stop you right there, Nicole. I want to know a little bit more about the eight-year-old you who got diagnosed and had to get, and you got misdiagnosed, obviously, and you said that you had a pretty severe case of Crohn's. So, how much of your diagnosis story, like, do you remember how how that felt when you were eight, or is it mostly like stories from your parents? And then the second part of that is the fact that you were so passionate. How did you go in four short years to being a passionate patient advocate?

SPEAKER_00 7:22

When I was diagnosed, I had no idea what inflammatory bowel disease was. My parents had never heard of it, it was never in my family. I literally had no idea why, why did I have it, you know? And so we knew nothing, nothing of the sorts. All I do remember is that my whole childhood was just really like when I imagine it, it's just all gray. It's very slow and dire, and I just so lifeless. I remember this one specific time we had gone to the park, and my sister was with me, and she was out on her scooter and like racing around the track. And I said to Mum, I'm just gonna go back to the car and get my drink bottle. And I went back to the car, crawled into the front seat because there was like a patch of sun that was beaming through the window, crawled up on the seat and just slept for the next two hours in the driver's seat, just curled up in a ball because I was so cold and I was so thin and fatigued and just tired. And honestly, all I can remember is sleeping all day. And it's just kind of it's crazy when I look back at photos as well, because I look so ill. But I think when you live with someone, you don't really, you know, you don't realize that they're like changing or that they look sicker or sicker. And yeah, and I would have lots of hair loss and just yeah, I was super, super light and barely had any fat on my bones. And yeah, it was just like little to my knowledge, you know, I had a chronic illness that was preventing me to allow nutrients to be absorbed through my intestine. So I I have been super fortunate in not having to have surgery or at any like, you know, super, super scary operations. And I'm super fortunate that the current medication I'm on is working for my Crohn's. But of course, it's always a fright knowing that there could be a time in my life when the medication stops working. Like I'm never fully comfortable, you know, with the my future's very unknown. Even now, while we're speaking, my Stellara is due. So my self-injection, and I can already tell, like, after this, I'm gonna go pick it up from the pharmacy. But this past week, my energy levels have just been starting to like decline and stuff, and I like can feel, you know, that I need I'm in need of, you know, my medication. And it's just crazy seeing like that change so quickly. Like, I don't know where I'd be without, you know, the medication we have. So when I did start camp, it was really just eye-opening, meeting a group, a community of people going through the same thing I was and building friendships and actually feeling like a kid because I honestly didn't really experience that throughout the first eight years of my life. And it was the first time that I I honestly like this is how I'm supposed to feel every single day. And so I think that's why I'm so passionate. I like the passion started within me. I I love this organization and everything it stood for.

SPEAKER_01 10:08

That makes complete sense. I mean, of course, when you get to run and play and have friends who understand, that is going to profoundly affect your life and your experiences. And I also have the same thing with my medication, my Crohn's medication. I know when it's it's almost time.

SPEAKER_02 10:26

I still think it's funny that there, like a doctor's just like, hey, you're 12 years old, let's repetition parliament. So that speaks very well of you. I feel like there was definitely like he saw the like the fire within you and was like, you're the right person to do this. You mentioned this as one of your advocacy efforts, but are there other advocacy efforts you've now gotten involved in because of that?

SPEAKER_00 10:44

Yeah, so aside from my work as ambassador for Currents and Colitis New Zealand, I'm also a member of the Association IFGA, which stands for the International Federation of Crowns and Colitis Association. Basically represents over 46 associations worldwide. And we all come together and kind of talk about different medications that are available in certain countries, certain policies and programs and things that we can then reflect on, take back to our own association and try and improve

Childhood Illness And What Camp Gave

SPEAKER_00 11:15

for ourselves. And so I'm a part of the youth group for IFCA. And so that then, you know, separates us again into the small group of young adults who are trying to more target the you know young adult population living with IBD. And we are currently, we actually just went, had a meeting over in Berlin. So I was in Berlin a couple weeks ago, which was super, super fun. And we were kind of talking about things that we can, you know, do to widen our audience. Um, so we're looking at starting a podcast, yeah, podcast as well. We're also looking at organizing like face-to-face meetings, but within our own associations, and we're doing live streams, we're kind of boosting our Instagram and TikTok and kind of just gaining a lot of media coverage, really, just trying to get our name out there because we are such a new group. So, yeah, that's super fun. And it's kind of where a lot of my focus is at the moment, as well as writing, you know, we also do educational newsletters and we're creating seminars as well, which will happen two to three times a year. So just kind of anything and everything, really.

SPEAKER_02 12:21

So when you're talking about what you're creating for like TikTok and Instagram, are there certain aspects of living with the disease, or is it just awareness raising about these diseases? Like, what part of it are you working on?

SPEAKER_00 12:32

Honestly, like coming from youth myself, when I'm on TikTok, I'm really just scrolling. And if I'm not constantly like immediately stimulated by see you later to the next one. So we're kind of wanting to keep it lighthearted, really fun, kind of like what I eat in a day, or you know, going through a flair. This is what helps me. And I think the great thing is with all of us, like we're all, these men and then there's women, we've all different age ranges from 18 up to 30. Some are studying, some are working. It's really just diverse. So it's kind of just more like what we're doing as someone living with IBD, while our Instagram is a lot more educational and a lot more, I suppose, more you know, formal.

SPEAKER_02 13:15

That makes a lot of sense. And yeah, I I also know that I think all of our content now, LinkedIn included, is like silly videos that only last like 10 seconds. And so I think that's just kind of the way people communicate now. But I love that. I think that's a really fun way to get people to uh understand the reality of living with inflammatory bowel disease. But I am curious about the fact that if you're talking about 40, you said 46 different organizations that are represented. Yeah, that's a lot of organizations and a lot of diversity amongst experiences, I would imagine. So you're from New Zealand. As you've been interacting with some of these other countries of these other federations, have you noticed any like distinct differences in your experience versus somebody from a different country? I realize that's a very big question.

SPEAKER_00 13:57

Off the top of my head, it was really funny the first time I met this group. Obviously, English isn't the first language, I would say. Usually it's German or you know, French. So I could barely understand them. And I was just like, oh, so the first meeting was actually just me trying to, you know, be friendly and kind of, you know, like, hi, like, you know, I can't how do I understand you? Pull out my Duolingo, like get my translation out. But I think the first, aside from the language differences, would be their medication options are far more vast than New Zealand's is. I would say honestly, that's probably the biggest one. And then I would also say it really like made me realize that not to brag, but New Zealand has a really great camp. And so and like, sorry to like bring it back to that, like again. But honestly, like no one, none of the associations from different countries I had met either had a camp for kids or something that was so involved. And I think for uh Crown Sakai's New Zealand, our Camp People Live literally is probably like a good, you know, 60% of our association. We put so much love and energy into it. So it really made me like embrace what we do have and how strong we are as an association. And I also think because we're a lot smaller, we're a lot closer and we work a lot better together. When I do know that when I was talking to some of the

Global Youth Advocacy And Social Media

SPEAKER_00 15:25

people in their associations, there was a lot of hierarchy and a lot of power dynamics and not feeling equal and voices not being heard. And so I think it's another great thing uh for our association. But I guess every country runs differently. But yeah, those are probably the main things I would say.

SPEAKER_01 15:42

I wonder if that's just cultural too, right? Like how the the people of that country live and their expectations of organizations like this. Because I know that camp is not a thing that's really widely accepted in a lot of cultures, right? So while it could benefit everyone, it's just not something that every culture does. A hundred percent. The medication part though, I would have thought that New Zealand would have similar medications to a lot of other countries, but you say you didn't find that.

SPEAKER_00 16:10

No, I don't think like we're we're in New Zealand's an awful place in terms of the medication available. We're actually very fortunate. Like we've actually only just recently had two new medications that's been funded, and that's a huge jump, which is really, really amazing. But I just do know that when I was conversing with some of the others, it was they were saying these names, and I was like, What are you talking about? I've never even heard. Like, is this the biologic name? Is this the brand name? But like, I just don't, yeah, couldn't even tell you.

SPEAKER_02 16:42

So when we've talked to a few people in the UK, for instance, like with theirs, the national health system works in a way where like you're part of like a regional group, right? And that regional group has a certain amount of money to spend on medications, and so you know, they ration sort of depending on how many people, blah, blah, blah. Is that the way it works in New Zealand as well?

SPEAKER_00 16:58

Yeah. And it's also why, again, it's it's super amazing that we've got these two new medications because the funding, especially our health system at the moment, is really sinking. Not enough jobs, not enough funding, like every condition, you then gotta, you know, split up the money once again. And so, yeah, it's not very pretty at the moment. Even like studying nursing, I'm really kind of worried about my future because we went through this huge a couple of years ago. Like, we need nurses, we need, you know, people who work in the house system, but then you cut all our jobs off, and now everyone's fleeing to Australia, better money, like you know, job availability. The house system is not great at the moment, let's just say. But yeah, we do have a set amount a set limit money. That's our funding.

SPEAKER_02 17:44

I mean, it makes sense. Everybody has a budget, I get it. But I'm disappointed to hear that your health system is struggling. Unfortunately, I feel like that's the case for everybody. I mean, ours, we in theory have, you know, access to every single medication out there, but you know, the reality is it's rationed in a different way, and we pay a lot more probably for the the privilege of it than in a lot of places. Thank you for that. You mentioned studying nursing. Did you having a chronic illness and and sort of having to access the healthcare system influence that or is this something that you sort of always had an inkling for?

SPEAKER_00 18:14

No, honestly, I think being when I was first diagnosed, I lived in the hospital for three months. And I think like just the nurses were honestly the things that got the people, sorry, the people who got me through those whole three months was literally the nurses. I had one nurse in particular who, and it's so distinct in my brain, but I had like a stuffed animal and it was a dog, and its ears was like hanging on by the thread. And she came up to me, she was like, Do you want me to take a wolf wolf home and sew his ears back on for you? And I was like, Oh, like that would be great. And so the next day she returned and like my stuffed

Medication Access And Health Funding

SPEAKER_00 18:49

animal who had been through every single procedure, I'd been through every MRI, every colonoscopy. He was always there with me, and his ears were sewn back on, and I just remember like crying of joy because I was just like, it's such like the little things that go so far. Like, honestly, that's the one of the biggest things I still remembered, like today. And I just think there's those little comfort cares, and it really is just me wanting to go and be able to give the same thing back to other kids, really.

SPEAKER_02 19:17

But yeah. Oh, that's beautiful. I love that. I think that is interesting how many people have those stories of that like one little moment where somebody was kind to them or something happened, and they're like, that's the thing, that's the pivotal thing. And so it is like you kind of never know when your act of kindness is going to be somebody's revolution.

SPEAKER_00 19:33

No, yeah, literally. And like even like those little small things, like complimenting someone on the sidewalk. Like you never know what people are going through, and it's always a small act of kindness that actually go the furthest.

SPEAKER_02 19:43

Yeah, I think the more we can do that, the better for folks. I want to circle back to camp. So you mentioned that you're now gonna come back as a counselor or a leader at camp. What does that entail? I mean, I'm assuming it's sleeping in a cabin with the kids, but tell us more about this.

SPEAKER_00 19:59

I yeah, so being coming back as a camp leader, I'll be working with the youngest, the eight-year-old, which I'm super stoked about. And I'll just be helping them move into their cabins and helping them sort out their medication, helping them make friends. Like it's always so nerve-wracking, like being away from your parents, like at such a young age. I'm expecting a lot of tears, I'm expecting a lot of troublemakers, a lot of drama, but I'm like, can't wait to soak up every moment of it. And yeah, like, oh, honestly, like I'm so excited. And just to really get like in and dirty with them and you know, go on the mudslides and do all these fun activities. I actually cannot wait. Camp is magical. I love it. Oh, really? How many kids come to your camp? Around 80. The first camp I went to, I'm pretty sure there was oh, Belinda's gonna fit a fat cheek for me on this. But like, I don't know if there was like 40 of us, maybe. So it's like almost double or has it has doubled, which is really amazing in such a short span, and it's actually at the point where we're at capacity and we're having to like turn away children for certain years just due to like funding, and obviously because we're a chatball trust, we have to, you know.

SPEAKER_02 21:11

Yeah. I feel like 80 is a good number, though. It's you know, you're still manageable, you still know probably a lot of the kids, and so that makes a lot of sense. The year camp moves around quite a bit. Do you notice a difference like when you when you're going back and forth to different sites? Is there a difference in how many kids attend, or are parents more willing to send their kids on airplanes regardless just because of the experience?

SPEAKER_00 21:32

Yeah, no. So we rotate between Wellington, which is our capital, Auckland, and Christchurch. So this year we'll be in Christchurch, just downs in the South Island. I honestly think that parents are a little bit hesitant for their child's first time at camp, but it is very rare in my experience for a kid to be sent home from camp having a negative experience and being like, I don't want to return. Yeah, this wasn't like, yeah, a bad experience. So I think with always like the positive feedback and whatnot, the next year parents are like, great, don't have to deal with my child for a week. See you later. Get on that plane. But yeah. So we see a lot of returning, a lot, a lot of returning campers, which is really great because it does mean you get to build a persona with them in a relationship. And yeah, it's really nice to see.

SPEAKER_02 22:19

I know Belinda may not want you to answer this question, but do you have a favorite campsite?

SPEAKER_00 22:24

Oh, I'm gonna say, hmm. Okay, yeah, she's gonna think it's our new this campwork coming up is going to be the new campsite in Christchurch. So I've never actually never been, but I would say that Christchurch is my favorite, but that's like referring to our old campsite. So we'll we'll see. Maybe maybe this new one will be triumphed. Who knows?

SPEAKER_02 22:46

We will wait with bated breath to find out whether this is your new favorite because it is. I mean, South Island is full disclosure, South Island is my favorite island of the two. So same, yeah.

SPEAKER_00 22:56

Yeah, yeah. Studying in Dunedin was the best decision I made. Like just the South Island in general. I love the South Island. It's just so beautiful. Yeah.

Why Nursing Becomes The Goal

SPEAKER_02 23:05

Okay, I want to circle back to the IFCC and about the Young Persons Council. Number one, how big is this council? Like, how many folks are a part of the youth council that you're part of? And then also, are the majority of them have they been diagnosed as children, or do you have some that were diagnosed as young adults? And like, does that then figure out how you focus your time and effort just based on like when people were diagnosed as part of that group?

SPEAKER_00 23:28

Yeah. So there is around 15 of us in the youth group. We all kind of range living with Crohn's or colitis. And again, even diagnosis-wise, like some were diagnosed literally last year, some diagnosed as a child. And so even at our last meeting, there was quite a few who were on liquid nutrition, like really actually just like just starting their journey. And I think it's actually kind of insightful because it does help. Like it kind of sounds like test rats, but not like that. But it when you're going through a flair, it's nice to know what do you need in this moment? What is the most fundamental? Like, if you were to re-go through this process of being newly diagnosed, what do you want to know? Because I know for me, like being diagnosed when I was eight, I don't even know what I I mean, at the time it was access to a toilet, but now I couldn't really tell you. Like it's yeah, so it's kind of nice. Like everyone's kind of different in terms of their, you know, diagnosis. How are projects agreed upon in this group? We kind of just go about what are you passionate about? So again, a lot of people, like for me personally, I love like the social media side, I love the marketing side. So that's an area that I'm more drawn to. So we just kind of split it off by what you want to do pretty much. Obviously, all of the work is again like a volunteered. So it's just, you know, we want to make it fun and not like a chore, like it's it's something that we want to do. Um, so if we can kind of cater to what everyone's strengths, where they the their strengths lie, then that's kind of how we go about it. But others, you know, they're interested in research, so they go and write academic papers and whatnot. And then some like to be behind the scenes and organize seminars and find the people to pull on for like a podcast, or you know, like these kind of steps and do the back work, those who don't like to be on the the the front and who the media sees and whatnot.

SPEAKER_02 25:20

But I realized I did not ask you this in the beginning, but how did you join this committee? Like, were you voted in? Like, did you volunteer? How how did you get this job that you volunteered to do?

SPEAKER_00 25:32

I literally ask myself that every day. Like, I genuinely, every time I'm at a board meeting, I'm like, why am I here? Like, but I love it. And I always say to Belinda, like, it's genuinely the biggest life accomplishment that I've had easily is being part of the association. Because I just I almost feel like I shouldn't be there. Like there's all these amazing doctors and IBD nurses, and you know, like Belinda, like the CEO, and like it's just like it's such a beautiful, like a you know, team of people. And I'm like, little wall, me, like little old 19-year-old, like, oh, okay. But yeah, so I think after the campaign, uh, that went on for quite a few years. So from 12 to when I reached 18. And then when I reached 18, they were then

Returning To Camp As A Leader

SPEAKER_00 26:17

like, okay, like, do you want to be part of part of the board? And it was like a a vote on the board. They, you know, went through that whole process, and I somehow got in. But um, so yeah, that was I I I did get voted in, but yeah.

SPEAKER_02 26:31

Well, that makes sense. And yeah, it's hard not to have a little bit of imposter syndrome, I'm sure, but there's a reason you were voted on. I mean, clearly, if you were willing to stick a campaign out for that long, then you obviously have some perseverance and uh passion. So I think it makes sense, it shows well. With all that campaigning, I'm surprised you didn't want to become a politician instead of a nurse.

SPEAKER_00 26:51

Oh my god, absolutely not. I honestly having an insight into like politics, not for me. I I always say this, it's literally like going back to high school. When you're in parliament, it's literally going back to high school. It is so clicky, it is so like popularity, you know, bias. Yeah, politician, yeah, not for me.

SPEAKER_01 27:17

With all of these things that you are doing in your advocacy work, how are you balancing nursing school with all of these outside initiatives and managing your personal care?

SPEAKER_00 27:30

Yes, it's all about balance, baby. So you really have to, I have to kind of plan my time well. And yeah, I only kind of take on things that I know that I can do. As soon as I take on too much and I can't pull 100% into it, I have to turn it down. It's just about finding what your limits are, where's your limitation, doing what you know you can do within your capacity. Nursing school is very full on. And at the moment, like we're going through placement and you know, 10-week-long placements. We've got exams coming up, we have no just the normal student stuff. And it's, you know, unpaid 40-hour weeks, it's long, it's tied, and then you also want to make time for your own physical and mental health. So then I like to do, you know, external activities. So you've got to make time for that. Then also your relationships, and then also my campaign work, and then I also have to work on top of that because you know, I'm not getting paid for these the shifts. So it's really just about finding a balance, which is why when I said my campaign was almost on the back burner a wee bit, it's just me in this stage of my life having to what do I need to prioritize at the moment? And in this current moment, it obviously is my degree. But fortunately, I'm in my last year. So as soon as I graduate, get a stable job, I can, you know, really dive back into everything else.

SPEAKER_02 28:51

Well, and I know we asked you this before we hit record, but you were debating with Robin whether you wanted to become an IBD nurse, a nurse that specializes in GI. So curious your thoughts on that. You can tell me you don't want to answer too. That's okay.

SPEAKER_00 29:02

No, of course. Yeah, so I was saying that I'm not sure if I want to blend so so much of my personal life and mix it with my work life because it's something that I am so passionate about, but I don't want it to, you know, I don't want that joy and that passion to kind of be, you know, taken away or to get become burnt out because it becomes my entire life. This is actually really interesting for me after I graduate when I get a job to see where I actually end up. But I'm currently really wanting to work in emergency or intensive care unit, which is actually really funny because in nursing school we have this thing called like the holy trio, and it's because everyone wants to be an ICU, emergency department, or pediatrics, and what do you do? I fit all three of them. But but yeah, I'm I think I'm really passionate about like I love I love the blood. I love give me the gore, give me, you know, I want it all. I want to be doing CPR, I want to be, yeah. Um give me my grace anatomy moment. Um honestly, yeah, I'm really excited. I also love kids, so pediatrics will be really fun. Honestly, just waiting to get I just want to get paid. I put some money in my bank account, so I'll take anything. That is fair, yes. But IBD nurse is not like definite definite no, but I do have to do postgrade study for that anyway. So it would probably be something down the line.

SPEAKER_01 30:28

That's interesting to know that you have to do like specialized training in it.

SPEAKER_02 30:31

Yeah, graduation at 19 feels young. Is that is that a bachelor's degree or an associate? Like, what am I just old and I don't remember what it's like to be in college? I'm confused.

SPEAKER_00 30:41

No, I I'm actually 20, but I just turned 20. So that's like my mind being like, oh shoot, like she's my wrong age because I'm so sorry, old age. So I'm 20, but I'll graduate at

Balancing School Advocacy And Burnout

SPEAKER_00 30:53

21, which will be next year. So our graduation is yeah, so three year bachelor.

SPEAKER_02 30:58

Got it. Okay, still fast. That's good. Yeah. So if you want to do like a specialty, you have to do some additional training beyond that, then yeah, yeah.

SPEAKER_00 31:05

Okay, makes sense. Another couple doctors have to do. Yeah, I know it's almost like should I have done med? But yeah, I don't know. It's so long, it's so long, yeah. And that's the thing, like in New Zealand, it's not just like, oh, you transfer your three years of nursing over into med school and you only got, you know, another nine to go. I have to start from square one health science.

SPEAKER_02 31:27

It's like, oh it feels like you have like enough experience that would be able to translate at least to some of those medical school classes. I mean, you're like anatomy, all the stuff you've had to study is very transferable. It's literally the same.

SPEAKER_00 31:42

Yeah. Yeah. Maybe some papers, but I know like for first year it's like health science in general, and that's when you've got to get like the average of 90% and whatnot. So I know in that sense, I've to start from the beginning, and oh, I'm overstudying.

SPEAKER_02 32:00

That's not a bad thing. Well, but I can understand you're saying that perhaps you want some distance from inflammatory bow disease, because especially since it since it is such a big part of your life. I know that Robin has definitely talked about that too, where sometimes you need to take a step back so that you can keep the passion for your other projects a little bit more present when you're there.

SPEAKER_00 32:18

Yeah, you don't want to give the fire too much oxygen and blow it out.

SPEAKER_02 32:22

It's a nice way of putting it. I like that. But would you want to go back to camp as a nurse though, instead of just a leader?

SPEAKER_00 32:28

Yes, definitely. And I'm actually kind of hoping that I can maybe observe some of the nurses there, some of the med team, and just, you know, brush up on my pharmacology and oh yeah, this whole medication, this whole thing. Uh yeah, you know, there's the pharmacokinetics for that one. And yeah, yeah.

SPEAKER_02 32:47

That would be so cool. I mean, I always think it's fun. I mean, Robin works with camps currently for her job, and she and I worked in camps in the past. And it has been really fun to see some like the kids, some of the kids that we knew go into medical fields or come back to camp as counselors and just to see what they've accomplished. It's that's I think one of the coolest things to see is how much people have accomplished and and to have them come back as some sort of contributor in a different way, either as a counselor or as a medical person. So that's super cool.

SPEAKER_01 33:12

Yeah, I think the campers love that too, whenever they see somebody in my current job as a PT or an OT or child life, even we do have a couple of doctors that have come back as just as counselors who are former campers. So, you know, the I think the kids, when they see you, come back as a counselor and then come back as a camp nurse, like watching you experiencing that. It opens up their eyes to what they can accomplish too.

SPEAKER_00 33:39

Oh, yeah, 100%. And I think even in terms of being a camper, like I have so many good friends, but they're all across the country. And it's really is like the one time of year where you get to like see each other again. And it's like a free trip. So I think it's also just continuing that friendship as well. It's such a like, you know, a beautiful thing.

SPEAKER_02 33:58

Yes, yeah. I would imagine, especially for your camp, since people are all over, you know, the country that are coming there, it would be kind of a challenge to get together on a pretty regular basis. And so it does make it even more of a fun reunion of sorts. Yeah, yeah, definitely.

Rural Care Travel Tips And Bathroom Stigma

unknown 34:13

Yeah.

SPEAKER_02 34:13

Rewinding back to just medical care in general in New Zealand. If you do have inflammatory bowel disease, are there specialists in some of the like more rural places? Or does everybody kind of have to like to go to a city to get like to see a specialist? How does that work?

SPEAKER_00 34:26

Yes. So I think we do have like certain programs, like Prime is one, for instance, which is like, you know, rural care. But for like IBD specifically, most of the time it's you have to go into the city to receive like, you know, infusions and whatnot, which is why I think so many people really do love like self-injections, because it's just you pick up the script and go and can self-administer at home and whatnot. I know for myself, like back at home, I live rurally as well. And so it is really, really efficient and really nice just to be able to, you know, take handles on my own, my own disease. But yeah, there is quite a big barrier actually, just rural care in general, across not just IBD, but every condition really, just because there are so many locations in New Zealand which is rural, and finding like equitable health care and access to health care is kind of a burden that we face as a country in general.

SPEAKER_02 35:21

Well, we don't do it much better, let me tell you. You know, I grew up in North Dakota, it's a super small state with hardly any people. And, you know, if you had a chronic illness, you were probably driving quite far to get to a specialist. And yeah, it happens here too. Well, and we just had Jose on not long ago, Jose Torres. He lived in New York City and it took him an hour on public transportation with no bathrooms to get to his doctor, and that was a big challenge. So even though he lived in a city, it was still not exactly accessible. So this is definitely a problem, I think, in general for lots of people with chronic illnesses.

SPEAKER_00 35:51

Yeah, no, definitely. And I actually found it really interesting as well, even being over in Europe, just like even there's so few bathrooms in general, but then also you have to pay to use the bathroom, which I just and like in cash, and I don't know, maybe it's just like not something that I'm used to or my my generation's used to, but like I just I've never had to pay to use a bathroom before when I everything's done online and in card or Apple Pay, and it's like, oh, cash. I don't what who is she? What is that? Like, yeah, and oh my god, on the plane back to New Zealand, I've now made a note, a mental note to you know pick the aisle seat because I I feel so bad being like sorry, I need to go use the bathroom when you're like stuck by the window middle seat. But I just like so like my stomach can't handle the plain food and sitting for like it was like a 33-hour trip and like my stomach was in agony, and I was just like, Oh, this sucks. Like, I really should have meal prepped some, you know, foods that I knew that my gut could handle or something along those lines, or picked an aisle seat so I could be by the bathroom because yeah, oh, that was a battle. Yeah.

SPEAKER_01 37:00

Uh, for anyone listening, travel tips, always pick the aisle seat. And if you can't, if you can't get the aisle seat, don't feel embarrassed or ashamed to have to go to the bathroom. I know that is hard because we all have a complex about living with a chronic illness, but I have said it on the show before with Stacey Collins, friend of the show, dietitian. Everybody poops, everybody has to go to the bathroom. Everybody, if they are drinking water like they should be on planes to stay hydrated, they're gonna have to go to the bathroom, especially a long flight. So I hope that you don't feel bad in the future about that. But literally everybody has to go to the bathroom.

SPEAKER_00 37:36

Literally, and I felt I feel like such a hypocrite as well, being like, you know, preaching, like, you know, own your IBD, like it's not to boo, like it's my whole role is to break down the burden on like, and then I'm over here being like, Oh, sorry, sir, can you please leave me out?

SPEAKER_01 37:53

Like even yeah, I feel like especially those of us who are loudest about, you know, what you just said, own your IBD, don't be embarrassed. But then as soon as you have to ask somebody to let you buy so you can go to the bathroom. Yeah, I have been in line for like in line at the bathroom at like shows or theater or play or something, and the line is so long. And I I've just been like, I can't, I can't, yeah. I have Crown's disease. Can somebody please let me go to the bathroom? Like, I've just gotten to the point where I couldn't stand anymore. And I could you could either let me cut or I could just go to the bathroom right here in this line. So what's because there's still taboo about having to go to the bathroom. There still is a taboo, and even though people are so vocal about it, sometimes it still can be, you know, yes, I did have to go to the bathroom three times on this plane. Maybe you shouldn't have sat on the aisle. Yeah.

SPEAKER_02 38:47

I don't know that we should make commentary about other people's choices. Let's start theirs, but I do agree with you that not literally, ashamed of standing up. Because the other thing is that, like honestly, you're like you're supposed to stand up more on planes than I do, I will say, and I should drink more water. Robin was pointing at me when she said that. I feel very targeted, Robin. But no, I mean, like the what the statistics are, you're supposed to like get up and walk more uh thanks to the blood stimulus. Yeah. So you could just say that's what you're doing. Like, I have clotting disorders if if you if you're feeling shy about it. But I agree with you. I mean, some of the the best advocates I've met, the people that were most passionate, had their moments where they were just a patient, you know, and they they knew that things could be different and they knew they could speak up in a different way, but they're just tired and scared or exhausted or sick. And you, you know, those are the times you need other people's louder voices too. So, you know, sometimes you have the loud one and sometimes other people are loud. So it's the way it works in our community, I think. Yeah, a hundred

Final Message To The IBD Community

SPEAKER_02 39:46

percent. Yeah.

SPEAKER_01 39:46

We have been talking for a little over an hour, Nicole. And unfortunately, it is time for me to ask you our last question, which is what is the one thing you want the IBD community to know?

SPEAKER_00 39:58

Honestly, we are not just patients, we are the future leaders, we are advocates and voices to raise awareness. The conversations we start today shape a better tomorrow, and that living with IBD can feel unfair and exhausting, but it's our story, and our story is powerful. I think that sometimes, like I know that a huge part of IBD, a huge barrier is mental health as well. It's not even just the invisible illness. Mental health is such a huge component in living with IBD. And I think, you know, give yourself some grace, give yourself time, be kind to yourself. And also know that like sometimes a small shift in how you see yourself becomes the spark for real change. Stop always having such a negative connotation, a negative perspective on yourself, and really, yeah, just be kind to yourself. Instead of look being thinking, I'm not as healthy as others, start thinking I'm building my own version of health. It's more progress rather than comparison. And that honestly, that you proof that resilience can look quiet and that strength can mean slowing down and that leadership can come from those who know how to keep going, like even if it's really hard. And yeah, I guess like you don't have to be fully healed to make an impact. You just have to be real enough to begin.

SPEAKER_02 41:21

So beautifully said, amazing. Nicole, thank you so much for being on the show. It was such a pleasure to get to talk to you and and to hear about your adventures and all the things that you're doing. So, and excited to see what you do in the future as well, whether that be IBD nursing or not, still making a huge impact in the IBD community. So I'm excited to see the other places you go as well. So amazing. So thank you, everyone. Thank you for being on the show. Thank you everyone for listening and cheers, everybody.

SPEAKER_00 41:46

Cheers, everybody. This is Nicole, and if you enjoyed today's episode, make sure to like and rate, subscribe, do all those things. And yeah, hope you have an amazing day.