Chantal : 0:30

Welcome to the Sunflower Conversations. I am your host, chantal, and joining me today is the United Ostomy Association of America and that has a acronym of UOAA, so I will be using the acronym, I think, as we journey through our conversation today, and we have World Ostomy Day Champion Keely Cat-Wells and Patient Advisory Chairperson Nate Hadlock. Welcome to you both, thank you.

Nate: 1:00

Thank you very much for having me.

Chantal : 1:02

So UOAA is a non-profit organization that supports, empowers and advocates for people who have had or will have an ostomy or continent diversion surgery. Millions of people worldwide have a stoma, yet there is a lack of knowledge and awareness. So today we'll address some of the common questions and dispel some myths. So before we do that, we're just going to give a visual description of what we look like, and so I will go first. I am a female. I am 50. I have brown skin. I have long brown curly hair which is shaved on one side. I am wearing clear framed glasses, I've got a nose ring, some earrings and I'm wearing a pink T-shirt and I'm wearing a Prouder Support Sunflower Lanyard, which is white with the green sunflower on. So I'm going to go to Keely next. Keely, would you like to introduce yourself with a visual description, please?

Keely: 2:02

Absolutely. Hi, I'm Keely Cat-Wells. I'm the CEO and founder of Making Space. I'm proud to be here and involved with the organisation, and I am a white woman with long blonde, wavy hair wearing a black t-shirt, and behind me is a blurred out background and you can just see a shelving unit.

Chantal : 2:24

Thank you and Nate.

Nate: 2:27

Hello, it's really exciting to be here. I've just started learning about the Sunflower organization and it's fun to learn about. I'm excited to to talk more and be involved. I am a white male. I'm in my mid to late 30s um.

Chantal : 2:45

I'm laughing because I'm the last few I've been saying, giving sort of like a really vague um age description, because I would say, oh, you know my late 40s and I turned 50 at the beginning of the year and I was reluctant to say my actual age because 50, I thought sounded really old. And then I thought why every year is a blessing, so I'm going to say the age. So sorry, Nate, carry on.

Nate: 3:11

No, you're fine, Well, and I feel very young and I'm grateful for that. So I am 37, but I tend to lean younger anyway. And then I have a shaved head and a short beard, and I'm wearing a black t-shirt, and I do have the sunflower lanyard on as well, and my black background is blurred as well, so you can just really see me.

Chantal : 3:37

Thank you very much.

Keely: 3:38

I'm also wearing a sunflower lanyard. I didn't say that.

Chantal : 3:43

The difference is that the green sunflower lanyard is which Nate and Keely are both wearing a green, and that is to indicate that they both have non-visible disability. So let's start by understanding the language. So, Nate, can I come to you? We've got different terms and I think if we could just understand these before we go further into the conversation, it would help our audience. So we've got ostomy and ostomate, and then there's stoma, then there's continent diversion and there's urostomy, colostomy and ileostomy. So if we could start with ostomy and ostomate please.

Nate: 4:20

Sure. So an ostomy and these days that's just used as a general term that encapsulates, you know, having an ostomy bag or a pouch and having a stoma, and you know, in this community we just kind of use that word freely to say, yes, I have an ostomy and that's everything involved. But an ostomy surgery is, you know, it's a surgical procedure where, due to lots of different reasons, your either GI tract or urinary tract needs to be diverted and so that's brought out through your abdominal wall to where you go to the bathroom in a pouch on your stomach and then an ostomate is just someone who has gone through that procedure.

Chantal : 5:07

That's great. And then you mentioned stoma when you were talking about that. So if you could clarify what exactly is a stoma?

Nate: 5:14

Yes, so the stoma is the actual part of your intestine or urinary tract that is brought out of your abdominal wall, that sticks out of your belly and that is usually, you know, stitched into place so that it's secure. So that's actually the, you know, the pinkish intestine that is sticking out of your belly that has output either stool or urine that goes into an ostomy bag or pouch. I'm not sure which term you'd prefer me to use, and it's debated in the community, but I prefer to say ostomy bag. But there are plenty who say stoma bag or stoma pouch or ostomy pouch.

Nate: 5:56

So if I get caught saying something different. It's just out of habit.

Chantal : 6:01

That's absolutely fine, because it's whatever term you're comfortable with, because you have it, and so therefore, you describe it and define it in the language that you're comfortable with. This is a podcast which goes out globally, so there will be differentiations, you know, in some of the language that we use. So we just ask people to be patient with us and know that we're coming from a place of um well-meaning and we're trying to just inform and educate so that to give everybody a broader understanding. So don't worry about that Continent diversion.

Nate: 6:39

So continent diversion, and this is actually something that I lived with before. I had my ostomy, and that's just where you know it's a different option where surgeons find a solution internally, where you don't necessarily need to have a stoma or an ostomy bag and they're able to create, you know, some kind of a, just a diversion of your intestine or urinary tract, and they create sometimes what's called what's most commonly used is what's called a j pouch and it's like a little reserve made of your intestines inside of your body. Um, but technically you're still like, completely hooked up with all of your intestines all the way through your gi system. Uh, so you don't actually have the stoma or the ostomy pouch and you still have a not a completely full function because clearly something medically wasn't properly working but you do still go to the bathroom, you have, you have use of your rectum and everything and like, like that.

Chantal : 7:53

so Thank you, because that was a new, a new one to me that I hadn't heard of. And then we've got I don't know if Keely, if you want to answer these ones We've got urostomy, colostomy and ileostomy. Are you able to explain the differences between those three terms?

Keely: 8:12

I will do my very best so I can start with an ileostomy. I have a ileostomy. I've had it for coming up to probably 10 years now. I had a lot of issues with my large colon, so to divert that they gave me a end ileostomy. So I have a permanent ileostomy and that is where you just have your small intestine, and then with a colostomy, that is where you still have your large intestine and then that is where you have then the stoma through your abdominal wall. So yeah, ileostomy, small intestine, colostomy, large intestine and then urostomy, I believe is the diversion of urine from the kidneys after the removal of the bladder. But, nate, please jump in, because I think I did a horrible job.

Nate: 9:11

No, that's exactly right, and I have a permanent ileostomy as well, and before that I actually needed a stoma and an ostomy when I was born because of birth defects, and then they reversed that to give me a continent diversion and a J pouch, and I had that for about 20 years and then that failed, so then I had to get another ileostomy and that's what I live with permanently now. So and those terms were defined perfectly.

Keely: 9:41

Those are great love it, and I'll throw in maybe one more um a loop ileostomy. So I originally, similar to you, I actually had um a few different surgeries prior to ending up with this one and I had it. Originally they gave me a loop ileostomy because they thought it was going to be temporary, but then I had so many different complications because I was still having issues with my large intestine, yeah, but now I have an end ileostomy.

Nate: 10:10

Likewise same here.

Chantal : 10:13

Well, it's absolutely fascinating. And, Nate, you said you were born with issues with your intestine. This has been going on since you were small. So what are some of the reasons that an individual might require a soma?

Nate: 10:29

You know, in my experience and what I see, most commonly the reasons are from different types of cancers, different types of, you know, inflammatory bowel disease, diverticulitis, different forms of incontinence, so there are multiple illnesses that can lead to needing an ostomy. And then, like me, I have met a few people who needed one because of just different birth defects. I always joke that I was just born with bad plumbing and that they just kind of had to fix the pipes a little bit because I didn't need mine because of any sort of illness. And then there are quite a few cases as well of people who have just had some kind of abdominal or pelvic trauma, like an injury or an accident or something like that, and what? And not all of their intestines are able to be saved, or something like that.

Chantal : 11:46

So then they, they need, might have that surgery, so that I mean it's lifesaving, isn't it?

Nate: 11:52

Absolutely but.

Chantal : 11:53

I mean, it's lifesaving, isn't it Absolutely, and so it's serious, and I think that that's something that we really want to kind of like bring home into this podcast, really, and this recording is that this is a very serious lifesaving surgery and what we want to do is sort of dispel some of the myths around it so that everybody feels included and doesn't feel embarrassed or ashamed and no stigma attached to having an ostomy. You are listening to the Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes.

Nate: 12:31

Well, just recently there was a man that I was talking to and he was asking questions about speaking about his ostomy and he was a little worried about being open with it, or how do I talk about these things, and I just tried to help build some confidence with him.

Nate: 12:47

Like this saved your life. So talk about it like something that saved your life and you don't have to be worried about it. You don't have to be ashamed or embarrassed about it. Just if someone else were walking down the street or another friend of yours had something else happen to them and it was a little bit more culturally acceptable, like something with their hand or whatever, and it saved their life, they would openly speak about it. So go ahead and speak about your ostomy like it. It's the wonderful life saving thing that it is, and I feel like that mindset also helps you to adjust to this life, because sometimes you can feel like you're you've got a brand new body. You know it's just important to help people to realize that it is life saving, that anyone of any age can have it, and you know we're all just going through this together and trying to figure it out.

Chantal : 13:38

There's a charity in Ireland called Crones and Colitis I'm sure you probably have a similar organization in the States and they have a campaign called the Poo Taboo, because we don't talk about poo but actually we need to. So we know what's healthy and what's not healthy and when to take action, and I think that just leads into what you're talking about there, nate, you know.

Keely: 14:01

Yeah, I really like that perspective, tina, of like yeah, it's life-saving, it absolutely is life-saving. And, chantel, what you mentioned around the stigma, too of it's only for older people, I remember when I first had surgery, I was kind of at the age where I was bouncing between the children's ward and the gastro ward and I do remember being on the gastro ward for a very, very long time with a lot of elderly people and feeling very isolated but also feeling so welcomed because they were the kindest people I've ever met in my entire life, and I shared a tiny bit about my journey on social media that I was just flooded with supportive comments and amazing empowering pictures of these young women in their bikinis on holiday, proudly with their ostomies. They were decorating them, putting stickers on them, and I've just never felt so seen, and it was only then that I was like I think it, it's going to be okay Things are going to be okay.

Chantal : 15:05

I like that being seen. It's so important, isn't it, to not feel isolated in your health journey. So can you explain what a typical daily care routine would be for an ostomate Nate like, for example, how is the bag emptied, and how often during the day and night would that need to be done? Is it different for everyone, or is it a similar?

Nate: 15:29

It is different for everyone, but it can kind of be put into categories of which type of ostomy you have, for instance, those with a colostomy and I feel like that's the most commonly heard phrase like out in the world, if you just see it on TV, they usually say a colostomy bag, even though there are different kinds. But for instance, with a colostomy you do use the restroom less. You're having less bowel movements With an ileostomy mine is fairly frequent. I feel like I almost never stopped pooping. It's a little bit slower in the morning because I haven't eaten for overnight, but I usually I would say I usually empty it four to six or seven times a day. It depends on how much you're eating and what your activity level is like or how much you want to have it be empty Like. Sometimes you can empty it much less and just let it fill up a lot throughout the day, but if you're someone who always likes to have the feeling of it being empty, then you could be doing it quite often.

Nate: 16:36

There are those who have what's called and for different reasons they have an even higher output ileostomy, and they'll wear pouches or bags that are quite long, because theirs really, really has a lot of output and they're emptying multiple times a day bathroom and empty it, and then I'm just on with my day, which is such a drastic change to the living life before where I would wake up and spend a couple hours in the restroom, then sometime in the afternoon I'd spend a couple hours in the restroom, then at night I'd spend a couple hours in the restroom, and now it's just. You know, it comes with its own little awkward things here and there, but you get used to it and I just wake up, I empty it, I do some things for a few hours, I empty it again and it just becomes a part of your routine and it just feels like a part of your body. I don't see it, as you know, like a medical device that I have to wear anything. It's just a part of me.

Chantal : 17:42

Yes, yes, and that seems sounds like you have so much more freedom now than you did before having to spend two hours in the bathroom at a time. Yes 100%. And, and and. As you said you can, you can sleep all through the night. It doesn't interrupt your sleep.

Nate: 17:59

Yes, and that's that is different for everyone, but I have you know I'm able to do that, and some people they do have higher output than others and it may wake them up in the middle of the night and your body gets used to it. Like if mine is going to have some kind of accident or pop off or something in the middle of the night because it's too full, my body recognizes it subconsciously and I just wake up and so your body adjusts. I like to give a lot of power to my mind and my body, like let it do its thing and get used to this new way of life and just embrace it. There are those who get woken up in the middle of the night, but I can make it through the night. If I don't pig out right before getting in bed, I'm usually fine.

Chantal : 18:51

Okay, and we shouldn't be pigging out right before anyway, should we? So that's good all around and what are the essentials in terms of hygiene? So some of the advice when we're talking to businesses is to think about having a shelf in cubicles so that you can put your clean equipment and pouches and sterilising so that it's kept in a clean environment rather than having to have it on the floor and go out of a bag. Can you explain a bit more about that?

Keely: 19:26

In a perfect world, every disabled restroom would have a shelf and a place where you can put your new supplies and a place for you to just have more space. But I feel like many of us have kind of made do with a lot of very difficult situations and inadequate or imperfect places to have to um change in and ostomy. I was actually even recently um on safari in Botswana and I got very creative with how I changed my ostomy in the middle of safari, which definitely I never, ever want to have to do again, but I'm quite proud of myself for making do. But I think the longer you have it, the more creative that you can get, and we're very used to adapting, but we shouldn't have to be. I would love for every single restroom to have a shelf and a space and be clean and also not have the fear of using the disabled restroom too because of being judged.

Chantal : 20:34

May I ask, in terms of that, the disabled restroom does it need to be a disabled restroom, or can we not have a shelf in all toilet cubicles, or does it need to be a bigger space?

Keely: 20:45

it's a good question. I mean, I think, for me personally. I I prefer having a sink in the restroom. That's very helpful for me. So the disabled restroom is definitely preferable and a preference for me.

Nate: 20:59

But, nate, intrigued on your thoughts, I lean towards using the disabled stall. If nothing else, it'll have a baby changing station. That's always a good thing, but I mean it would be incredible. I do some delivery driving in the evenings and so around town I'm always just whichever restroom I can get to that I know is the best, and so I've got a few like gas stations that I know are good and a few shopping areas that I know have the better restrooms and things. So I'm I'm always trying to find the best one that has, you know, the cleanest facilities or that does have some kind of shelf in it, or in case I need to, in case there's any little emergency or anything, and I find that, yeah, not a lot of places cater to those kinds of needs.

Chantal : 21:51

You are listening to the Sunflower Conversations. Remember to hit subscribe. So do you always have to have quite a reasonable size bag with you? Is there quite a lot of equipment and supplies that you need to have with you at all times?

Nate: 22:05

For me. I've gotten so used to it. It's become a part of my life now and I'm very used to. I know exactly how it's going to behave all the time. I know how well my products work and I've been doing this for 15 years and so I've got everything kind of down to a perfect science and I know what's going to happen based on my situation.

Nate: 22:26

At the beginning I did carry a little travel pack in my car with me everywhere of supplies, but now I just, you know, I put one pouch on and I just know that that's going to work for me, because I've tried multiple and I know this is the best one for me and everything, and I'm just relying on that throughout the week. And I know it's a little different in the UK. I've found that a lot of ostomates in the UK are changing their entire system daily and I'm wearing mine for about a week at a time. So I think there's a little difference there and I think there's a lot that goes into that that we probably don't have time to get into today, but there's lots of different companies selling these products, aren't there as well?

Chantal : 23:13

yes, right, because it means you have got choice across the market, I would imagine, so that you're not stuck with just one provider, but in terms of I guess what it's what works for different individuals yes, I do wish there were a little more competition it would be nice yes, I I mean obviously, like I have found something that works very well for me and it's very reliable and I've trusted it for a long time.

Nate: 23:39

But it would be nice, you know, in terms of development and things like that, I feel like the technology in the space does move fairly slowly in terms of innovation and styles and everything like that. It does move. It moves well, like our needs are provided for, but it does kind of crawl along.

Chantal : 24:03

There's a gap in the tip.

Keely: 24:05

Definitely a big gap. Gap, I think, for me slightly different. I always plan for the worst case scenario. I travel with probably way more than I actually need. I've been caught way too many times thinking that I know exactly how everything is going to work and then I just I always get I'm it, just something goes wrong. So I now over plan, over prepare um especially, and I travel a lot. Um, I do a lot of flying on planes and I'm always taking an extra bag in um on the airplane with me. But I will say I've got probably pretty, I'm pretty good. If I'm just like leaving the house, going to dinner or something, I'll take something super small and not a lot with me. But traveling, I'm pretty good. If I'm just like leaving the house, going to dinner or something, I'll take something super small and not a lot with me. But traveling, I'm different, I will take so, so much stuff with me.

Chantal : 24:51

Yeah, over you have to be over cautious. Are there any foods or drinks that must be avoided? Is there any guidance on that or your experience?

Keely: 25:03

I personally got told to avoid mushrooms and popcorn, but I've seen other estimates eat mushrooms so I'm like, is that okay? And I haven't risked it, but I would really like to eat mushrooms again. So, nate, I want to hear what you do in your expertise.

Nate: 25:19

This is definitely out of all the questions.

Nate: 25:23

This is definitely the one where the answer it's different for everyone applies the most, Because even if two people with an ileostomy, everyone's intestines are still a little bit different on the inside Different structural issues and old scar tissue and things like that and so things that I'm able to eat, even though I have the same exact situation as someone else, they might not be able to eat those foods, and I was scared of a lot of food coming out of all my surgeries and things like that.

Nate: 25:56

But I found that over the years I can eat pretty much anything and if it's something I am a little bit more scared of, like mushrooms or corn or popcorn or nuts, I just have to eat that in moderation and I just chew it like crazy. I do still, for the most part, avoid corn and mushrooms and celery, but based on things that have happened, I think that if I just chewed it really well, I would be okay. Some people can eat whatever they want and they're totally fine. Some people in my exact same situation have a much more restricted diet. So it's totally dependent on what is internally going on still, especially with whatever your diagnosis is as well, Because mine, like I said, was just kind of piping that needed to be fixed. But other people they're still dealing with their IBD or their Crohn's or their colitis, things like that, and that greatly affects what you're able to eat like that and that greatly affects what you're able to eat, and some myth busting that they smell and that they're unhygienic

Nate: 27:18

night. Um, they, they only smell if you open them. They are made to be very hygienic. They are like I shower every day and there's nothing getting on my skin. There's nothing getting on my clothes. I can touch them and you know, and they know they do not smell. If you're using the product properly and you found one that works well for you and you're with your body type and your skin type, that actually like, sticks well to your skin and you're doing everything properly, and you may need to use different kinds of accessories and things. But no, if if you've got a good system and you found the products that work for you, they're, they're very hygienic.

Chantal : 27:56

You can get them wet, you can be active in them and you're not going to be smelling and making a mess everywhere all the time be smelling and making a mess everywhere all the time, so you can basically participate in all in all activities in terms of, like, getting going into the swimming pool and showering.

Nate: 28:16

Yes.

Chantal : 28:17

We've heard some reports of people being asked to not enter a swimming pool because of their stoma, which is the most humiliating and heartbreaking thing to have said to you. That's completely wrong.

Nate: 28:31

Completely wrong. Unless it's actively peeling off because something has gone wrong. There's no reason you can't get in a pool. You won't affect anyone else. You're cause you. You're not going to make the water dirty or anything like that. You're. You're perfectly able to get in a swimming pool with the public and that's the perception, isn't it, that we want to change.

Chantal : 28:56

I was actually just on holiday and there was a young lady and she got really nice bikini on and she had a stoma and she appeared to me to be very body confident about that and because, probably because of the work I do here at Hidden Disability Sunflower, I'm kind of a bit more aware. But I do wonder how many people were asking her what's that? You know, and the looks and the stares, it must be quite uncomfortable. Have you experienced anything like that Keely?

Keely: 29:32

Yeah, I, I transparently it's. It's weird Like I. I'm very proud of my identity as a disabled person. I'm so grateful that it saved my life and I work within disability rights. But to be honest, it does even surprise me how awkward I get if someone asks me a question or points or stares or asks me details. I still really struggle with the internalized ableism of it all. But I'm grateful when people ask questions because they're just curious and it is something that's not super familiar to everyone and it is a unique experience. So I would rather people ask questions than make judgments, and I'm I just have to get better at my with my own self and with my own trauma and everything that I've been through, to just get better at it and just be more comfortable with that. And especially when it's kids and young people, I think there's nothing better than a kid learning something new and probably getting their mind changed about something and hearing it directly from the person rather than probably an inaccurate representation in the media.

Chantal : 30:48

And yeah, yeah, so I'm getting better and grateful for the questions well, you'll have this podcast episode, so if you have anybody asking, you can say here listen, definitely, and that will answer all their questions. Um, so I know that Nate was up at the crack of dawn, uh, exercising, because one of the other myths is that strenuous activity must be avoided. What kind of activity were you doing this morning, nate?

Nate: 31:17

Yeah, I have to get up very early because it gets way too hot out here in the desert to be exercising outdoors after like 8am. So I was outside running and then I found some steep hills to go walking. So I did probably, yeah, I ran about three miles and then walked around the neighborhood where I could find all the steepest hills, and then I actually came back and before the podcast started I was lifting weights at home.

Chantal : 31:46

Okay, well, you've smashed that myth, thanks. And then intimate relations must be avoided.

Keely: 31:56

And then intimate relations must be avoided are ostomates able to have intimate relations, of course, yes, absolutely definitely. I'm, I'm married, I got married a few years ago.

Chantal : 32:04

Um, and yeah, definitely thank you very, very, very nice to hear that um, I'm single so she could probably answer more questions, but it doesn't stop us from any of that Good good and in terms of I guess this is a really personal question, so it's not necessarily about you, Keeley, but generally are ostomates, females, able to have children.

Keely: 32:32

Absolutely, yeah, I believe. So I follow a lot of incredible women on social media who have had the kids and shared their pregnancy journeys with having an ostomy, and it's really awesome to see because that was one of the questions I had that I never actually got a good answer to. To be honest, it and my health journey has been very, very odd. So obviously that an ostomy is because of so many different reasons, as we've already explored. So obviously it does depend on um everything else that that you have with your health journey, but, um, an ostomy itself does definitely not stop women from having kids.

Chantal : 33:14

So what are some of the main concerns that UOAA are contacted by ostomates about?

Nate: 33:21

I would say the number one stop for educational resources, first off for people of ostomates of all kinds Either they've just gotten their ostomy or they've had it for a while and it has a lot of different types of educational resources.

Nate: 33:37

It has things that the organization has put together. It has sources and materials and questions that have been answered and things like that from nurses and physicians around the world. From nurses and physicians around the world, they provide access to hundreds of support groups throughout the United States and you can find those you can search, like where you live and where the closest support groups are to where you live. They have great resources in terms of you know your rights as a disabled person. We're getting close to we're in the middle of updating and getting ready to put out the newest iteration of our patient bill of rights that explains things about work, situations in the workplace or things like that and things that you should know as a person with an ostomy. Things like that and things that you should know as a person with an ostomy what you're able to do, what you're allowed and in terms of interacting with professional life or school life, things like that.

Chantal : 34:43

Sounds like a great resource hub.

Nate: 34:46

Yes.

Chantal : 34:47

So at the end of this we'll put the details of how people can contact you this while we'll put the the details of how people can contact you aaa to um to access those resources and support. I want to ask both of you this and, keely, I'll go to you first. As a disability inclusion tool, what benefits do you think the sunflower offers to wearers with non-visible disabilities, which obviously includes ostomates?

Keely: 35:13

oh, it's been huge. For me personally, I think, as I briefly mentioned, the having to use a disabled restroom is usually the something that I need to do, and I've been accused so many times of taking advantage of a system or faking a disability or and I've been verbally abused, I've even been physically abused for using a disabled restroom and it's been, it's been really horrible. So having a lanyard that is becoming more and more recognized, especially in places like airports, has been incredibly beneficial and for me too, like I have other complications with my health and sometimes I'll use a mobility aid, sometimes I won't. It depends on my symptoms. On the day, I live with a dynamic disability, but when I don't, knowing that my energy will probably fluctuate without throughout that day, my pain levels will probably fluctuate and having a sunflower lanyard to really, I think, kind of explain that without having to say anything, and even a reminder to myself of it's okay to go and sit down no one, it's like, you're okay. It feels like a safety net in a way.

Chantal : 36:29

I'm really sorry to hear that the treatment that you've received, but unfortunately that is the reality and I'm glad to to know that the sunflower offers you some kind of protection and confidence for you when you're in those you know scenarios. Thanks for sharing that Nate you. What are your views about it?

Nate: 36:51

I mean, I I think Keely answered that perfectly, and I'm sorry as well that you've been treated poorly in those kinds of situations. That makes me really sad. And, like I said, I'm new to even hearing about this organization, which I'm surprised by. I don't know why I didn't know about it before, but since hearing about it in the last couple months, I've you know, I've researched it and I've, as I've been doing that, some friends have reached out and they've said, yes, this has actually helped me a lot while I've been traveling and things like that. So I guess the proof is in the pudding. So you're doing great work and I'm excited to wear it, even if I don't need it somewhere, just as representation, maybe just to help make it more of a normal thing, even if I have to explain it to somebody, an employee somewhere, or to someone else who's disabled. And I'm just looking forward to helping other people like me through either wearing this, representing it some way, or just spreading the word about it. I think it's a wonderful, wonderful tool.

Chantal : 38:09

Thank you, we very much value your advocacy. Thank you, we very much value your advocacy. And other than traveling, I mean in airports. It's really been an absolute marvel. Right now we've got 325 airports globally that are members, so those airports have taken our training to understand what non-visible disabilities are, what the sunflower represents and how to interact with sunflower wearers. But it has moved into other sectors as well. And in terms of ostomates, in what situations or places do you see the sunflower being useful for other ostomates and yourselves?

Keely: 38:46

I mean, I think for me, even like going out shopping and just being out in public generally, um, it's really important and, yeah, just the idea of like it being a visible representation of something that is often scary to also talk about. And, as someone who is probably better at advocating for others than they are themselves like I'm not great at being my own advocate, but I'm bad I'm pretty good at being it for other people um, it's also just great to have it there. Um, so I don't always need to share and advocate myself in. In certain ways, it's just, it's just something that can kind of do that work for me in in some situations. It's definitely.

Chantal : 39:32

It's definitely a tool to remove the need to communicate verbally.

Chantal : 39:37

You know, like this is all you need to know. You don't need to know the ins and outs and um, just ask me if I need any support and please don't judge me. And I think that that's a crucial thing for an ostomate, especially something, as you know, when you, if you need access to a toilet, it is no sort of dilly dallying about that. You know, if you need access, you need access. Public spaces, sporting events, shopping, going out to the restaurant, those kinds of things would definitely the sunflower is a valuable companion. I think Definitely the sunflower is a valuable companion. I think so what advice can you share now with anyone who is beginning their journey with a stoma and is worried about the public's perception of it?

Nate: 40:29

I'll ask you first Nate and then Keely, if you wouldn't mind following up. Well, first of all, just to be very, very patient with yourself. It can just, like you know, getting your knee replaced or something, and it feels like your entire body is brand new at least it did for me. And so I would say be very patient with yourself and just allow yourself to adapt and get to know this new life. But at the same time, once you get used to that physical part of it, your mental health is a really big deal in the years following. Like.

Nate: 41:20

That's something that I still have to work on daily, and so I would say to not give in to as best you can, to the negative or the embarrassing sides of it, to really work hard to focus on the gratitude and the perspective of the whole situation, because that can change how you act physically, how you interact with other people.

Nate: 41:47

You want to get to a place where you can feel comfortable and confident with yourself so that you can just enjoy everyday life.

Nate: 41:56

I've seen plenty of people who allow it to get them really down and they just choose to stay in that place and no matter how much you talk to them, they refuse to see it as something to be grateful for, even if it did save their life. So I would just say to, as hard as it can be, to really focus on being grateful, to really focus on you know, changing your perspective and working on accepting this life that you're able to live now, even if you have to live it a little differently than you expected. But the more confident you are with it and the more matter of fact you are with speaking about it, the better the public's perception will be of it. With your friends, with your family, with people in the workplace. It's so funny the drastic change in dating, the drastic change between being shy about it and hiding it as opposed to being very open with it, it just it changes everything and the way people see you, the way they treat you there's a lot to say, but yes, to truly embrace.

Nate: 43:07

Embrace it and you know, just keep going one step at a time, and you'll be okay.

Chantal : 43:12

Thank you, keely.

Keely: 43:14

Yeah, I'd say I think find your community, find other people who have that shared experience, and you're going to find people who have vastly different experiences than as you with their ostomies. I think that was something I learned very early on is, even though I could relate and I was so grateful to see the representation of other people, like on social media and connecting those groups, I realized very, very quickly that you use different supplies and people have different experiences and different illnesses and you're never gonna find the perfect person that's gonna kind of show you the way and teach you everything. And I think that's kind of I was really hoping and so desperate to find people who could kind of hold my hand along this very scary new process, especially as a young person, and it kind of forced me to change my career pretty drastically because I wanted to be a dancer and it was just. It was a huge life change, um, but when I started connecting with community, but reminding myself that it was, I can't rely on that.

Keely: 44:23

You have to do the work yourself and, as Nate said, getting that mental health support is absolutely imperative, um, but having that support system in place is also equally um as important and I was very, very lucky. My family has been incredibly supportive. My mum has been absolutely amazing. So I think also take people's help if they're giving it. I'm, like many listening, probably one of those people that's like no, I want to do it on my own, independently, I don't need help. But you do. You absolutely do. You need community, you need help. Take it, say yes and thank them say yes and thank them.

Chantal : 44:58

I like that. I like that. Well. I want to thank you both so much for your time. Um. You've come as sort of advocates and represent representatives of um, the organization, but you've also shared your personal experiences as well, which is obviously deeply personal to you, and we are very grateful for your time and what you've had to say. It's been brilliant. Thank you so much.

Nate: 45:24

Thank you. Thank you. This has been an incredible opportunity and I really appreciate it.

Chantal : 45:28

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner. If you enjoyed this podcast, please share it, leave a rating and review to help raise awareness of non-visible disabilities and the hidden disability sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.