Sam is joined by Olivia Rose, Chief Marketing Officer at Ostique, to talk about a new app for people with stomas. Ostique Connect is a first-of-its-kind support platform for ostomates, providing the opportunity to connect with others for one-to-one peer support. Olivia and Sam discuss the development of the app and the valuable feedback ostomates have provided during the beta testing process.
Ostique website: https://ostique.co.uk/
Ostique Instagram: https://www.instagram.com/ostiqueltd/
If you have any questions about the app, you can email Ostique at: office@ostique.co.uk
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Welcome to today’s podcast, which is all about Ostique Connect. Ostique is transforming the lives of people with chronic bowel disease through innovative products and the power of shared experience. Their new app, Ostique Connect, is a first of its kind support platform for ostomates, providing the opportunity to connect with others for one to one peer support. Today I’m joined by Olivia Rose, Chief Marketing Officer at Ostique, to find out more. So hi, Olivia. Thanks for coming along.
Olivia
Hi, thank you so much for having me. I’m absolutely thrilled to be here.
Sam
And I should say that there’s no family connections – that I’m aware of, at least – in terms of surname.
Olivia
No. We don’t think we’re related!
Sam
So today’s episode, as I said all about Ostique Connect and this platform, that aims to bring people together who have a stoma. So I guess a good place to start is for people who might be listening and aren’t aware of what a stoma is and all the different types like ileostomy, colostomy, urostomy.
Olivia
Sure.
Sam
If we could just give a bit of an overview of what that’s all about, really.
Olivia
No, absolutely. So a stoma is an opening that is made on the abdomen to divert waste outside of the body, and that waste can be either faecal waste or it can be urine. So the three main types of stroma are one, a urostomy. So that is when you’ve had to have a bladder removed for a reason. Such as bladder cancer. So that is when urine is diverted outside of the body and collect it into a bag, and the other two types, colostomy and ileostomy, are when faecal waste is diverted outside and they have the different names because a colostomy is when your large intestine or your colon is the part that is diverted outside of the body and then an ileostomy is when your small bowel or the ilium is diverted outside. And it’s important that we note the difference, because the type of waste that comes out of the body is very different, and therefore the bag that is required to collect it is very different.
Sam
Lovely. Thanks, really easy to understand explanation everybody I think. And just to say as well, I had a temporary ileostomy myself. Oh, my gosh. Too many years ago than I would like to think of – 14 years. So what does Ostique do then in this area?
Olivia
So in kind of just on our kind of basis of what we would define ourselves as we are an ostomy care company. But I think what’s more important to think about is our mission and our vision. And as you kind of mentioned kindly in the introduction, we really focus on how can we transform the lives of people with chronic bowel disease. And we look at it in a very holistic way that not a lot of people before us have. So we look at it in terms of, OK. How can we innovate from a product perspective and make sure that the products out there are not only as functionally sound as they could possibly be, so they are doing the job to the best of the ability that they can. But actually how can they also be more aesthetically pleasing and more importantly, less medically stigmatising, which a lot of products to date have been, and that can really affect people’s confidence and actually can completely change how they go about living their lives from before their surgery to afterwards. And then in kind of coupling with the products, we also look at how we can help people from a mental health perspective and from again that confidence and empowerment perspective. And for us that really comes down to enabling people to share their experiences with one another because it feels like a lot of the kind of stigma that has potentially surrounded this area for so long has been because people have been suffering in silence and felt very isolated and alone, and we believe the more that you open up the conversation and the more that you allow people to connect with other people who’ve been on a similar journey, the more you can really kind of dispel that. So that’s our kind of reason for being, I would say.
Sam
And there’s so much to talk about around stomas isn’t there because as you say, you can have sort of a product that fixes the physical issue of sort of where does the waste go and that sort of thing. But actually there’s just so much to think about in terms of how having a stoma can change your relationships potentially, your fashion – what do you wear, how you exercise and all of that sort of stuff as well. So there’s lots of conversations to be had about it.
Olivia
Absolutely. I think people can safely say that it impacts every part of their life, even if it doesn’t from a physical perspective, there will be thoughts around it or anxieties around it in the lead up to doing those things. Like travel is quite a large one where people are unsure if it’s going to affect their travel. Can you go on an aeroplane? Or will the bag blow up. There’s lots of questions around that, you know, going through security will things go off and there’s not necessarily been up until this point sort of one central hub to go to speak to people who have already been through that experience and can help you with advice and make you feel calmer about that.
Sam
Yeah, and toilets as well, just popped into my head because I went on a train on Saturday evening and I went to the toilet just to have a wee and it was about 9:10pm. And then I saw on the door that the toilets closed at 9pm. And it does just make you think like, because we’re sort of working in this space. Like, what if I had a stoma or what if I had to change my bag and I’m here? And the trains are still running. People are, you know, still coming and you can’t, there’s nowhere to change your bag or, you know, do a myriad of other things that people might really need to do right away.
Olivia
100% I think the toilet thing is a really important point by itself. It’s about, it’s about all sorts of things. It’s about making sure that there are accessible toilets that are accessible to all of the kinds of people that need them wherever and whenever they might need them. There’s also a lot of stoma patients have said to us previously that people look at them like they shouldn’t be using the disabled toilet. A stoma is what we call a kind of hidden disability. Not everybody wants to define themselves as disabled, but those that do call it a hidden disability. You can’t see that there’s anything from the outside, and often there’s quite a lot of judgement from people as to the kinds of people that should be using a disabled bathroom. And that makes it really difficult for people and then yet also about where do, where are those accessible toilets and there’s a lot of people doing a lot of work to make sure that stations, stadiums, all these massive places where you would think that these things are accessible and are also stoma friendly cause you do need slightly different things. If you have a stoma there to just kind of it being a large open space. There’s a lot of work being done, but it hasn’t. Nothing’s happened for a long old time before that, and it’s quite wild that people have had to kind of suffer like that for so long.
Sam
Yeah. And as you say, the accessible toilets might not be fit for a particular purpose. Sorry, I’m definitely going on a tangent here, but it just reminds me of a campaign called boys need bins, which I think is headed up by Prostate Cancer UK, which, yeah, talking about how, you know.
Olivia
That’s clever.
Sam
Guys need bins in their toilets as well because they might have incontinence, they might have a stoma bag, you know all of these things that you know everybody might need to do in the toilet.
Olivia
That’s such a good point. I’ve never heard of that campaign, I’ll have a look.
Sam
Yeah. It sounds like they’re making quite good headway with it. And yeah, I think that people are a bit a bit better these days on kind of hidden disabilities and accessible toilets, but yeah, definitely still like stigma and lots of work to be done around it.
Olivia
Yeah, I think there’s a long way to go still.
Sam
And so, lots of conversations to be had then and Ostique connect – as I very neatly segue in! – is a place where people can have these conversations. So tell us about Ostique connect.
Olivia
Yes. Sure, I think to kind of understand Ostique Connect, it’s good to just go a little bit back in terms of why we came up with the idea in the first place.
Sam
Sure.
Olivia
And that was really because we have the privilege and the pleasure of speaking to so many people within the community. And that is tonnes and tonnes of ostomates, but also people who may be an ostomate in the future. So perhaps who have IBD or have been told that that might be something that’s happened. As well as consultants, stoma nurses, different people work in different hospitals, and there seemed to be a through line with all of the conversation. Anytime that we asked, what do you feel is missing? What do you feel is really important and potentially when we ask consultants and nurses, etcetera, what do you feel that you don’t have the funding or the time to be able to do that you wish you could and everything that came through was there is an epidemic of isolation and loneliness amongst ostomates and nobody has figured out how to address that. There’s no sort of central database for ostomates where you can go to find somebody who’s had a similar experience to you. There are in-person support groups that are wonderful that take place around the country, but they generally are once a month if you’re lucky or generally once every two months. And if you are feeling particularly isolated and alone, you probably need more frequency than that. And there are also great support groups on things like Facebook that belong to different charities, which are amazing, but again that is quite, it’s quite an open forum and if you wanted to talk about something that was a particularly intimate fear or concern or question doesn’t necessarily lend itself to that. So we mulled over this for quite some time and tried to find what would be if we could create something that would solve all of these problems. What would that look like and what we landed on was Ostique Connect which hopefully does solve all of those problems, but it’s essentially an app based platform which is available on Apple and also on Android. And the app’s algorithm helps to match you with potential matches that you can then chat with, and it would be ostomates who have been on a similar journey and experience to yourself, so generally somebody with IBD would have had a very different experience and IBD, by the way, is that something like a Crohn’s disease or an ulcerative colitis. So. Tends to be diagnosed earlier in life, tends to be quite a long process of being poorly, and a stoma would tend to come quite a few years down the line. I mean, these are these are generalisations, but on the whole that’s how kind of how it works. Whereas if somebody is diagnosed with a bowel cancer. Or rectal cancer or something like that. Normally the symptoms don’t show till later. So once you have been diagnosed, it’s normally quite a quick transition to have that surgery, so having many, many years to come to terms with, to research, to kind of get your head around having a stroke or it’s quite different to you go to a doctor, you’re told you have cancer, you wake up with the stoma the next day and it was important for us to make sure that the app worked with those nuances. Same with, you know, there are other ways that people can end up with the stoma, people have a car crash and the trauma leads to stoma. People get it in childbirth. There’s lots of different things and it was important for us that you weren’t just matched with a random ostomate, you were matched with someone who understood what you had been through. So that’s kind of a criteria that we put in. Ostique Connect is about connecting ostomates with one another so that they can provide each other with one to one peer support. It’s a very long winded answer, I’m sorry about that.
Sam
No, that’s no, that’s great. It sounds like a really kind of thorough app and I really like how you can put kind of all of these different factors in and talk find somebody who you can talk to about something very specific. And then at the same time it’s very simple, but in a good way because I had a little look at the kind of preview video that you kindly shared with me and it is at its core. You know, connecting one person with another, it doesn’t contain any kind of distracting other bits and bobs and and fluff. You know, it’s like this is what I’m here for. And yeah, it just seems to work very simply and as you say, as well, it definitely resonates with me finding somebody who’s going on or or has been on a similar journey because somebody, as you say, who had cancer like myself and is told or you’re gonna, you need to have a stoma. I was told to have like my whole bowel removed. And my parents were in there with me because I was only 22 years old and my dad kept thinking that the consultant was saying stomach because we never even heard of a stoma before. We didn’t know, you know what it was? Yeah, compared to somebody who, for example, could have symptoms that are so debilitating with their colon that actually.
Olivia
Yeah.
Sam
Having a stoma can give them their life back, potentially, and there’s a lot in between the two as well.
Olivia
There’s definitely a lot in between the two, and actually more in between the two now that I’ve seen we’ve done our kind of first survey from the users so far in Ostique Connect and that’s really come up that there’s, there’s actually real mixed feelings from a lot of people, which I actually thought previously more people were in one camp or another. That I think there’s definitely people for whom a stoma enabled them to have a life when they really didn’t have one before. If you can’t be more than a foot from a toilet, then you are very limited in what you’re able to do. Whereas if, and I don’t know if this was your experience, but normally if you have cancer you don’t really know until quite late. So your life is kind of fine up until a point and then you have the stoma and then actually you’ve got all of these adaptations that need to be made as a result of this thing, and actually, maybe you don’t love it. Maybe it’s not giving you your life back. And actually that’s OK to talk about and that’s actually a really important conversation to have. So that other people who feel like that don’t feel like they’re strange for not shouting it from the rooftops and saying how great it is and actually all of these feelings are fine, and all of these feelings are valid and hopefully speaking to someone else who has the similar feeling to you makes you feel that way.
Sam
Yeah, yeah, definitely. I think it’s really important to be able to share all these stories and yeah, show that they’re all valid feelings. And there’s no wrong way of doing all of this stuff.
Olivia
Yeah, absolutely.
Sam
And let’s talk about the sort of testing and the developing of the app then, because it’s currently in beta testing, is that right?
Olivia
Right. It is very exciting phase for us. We could have just released the app straight away, but we really didn’t want to do that because whilst we as a team really felt like the app was answering the needs of everyone who had spoken to us to date, we really felt like until real ostomates were on there trialling it, using it, feeding back to us, there might be something that we have completely missed or it might not actually be fit for purpose for a number of reasons. Or there might be something that people just really need on top of what we’re offering. So it was really important to us to have a trial period. We have like just under 150 people using it at the moment and tonnes of matches, which is amazing. Like almost 600 matches for those 150 people. So yeah.
Sam
Oh wow.
Olivia
And yeah, there’s more than 2000 messages so far and it’s only been sort of five weeks. So that’s an amazing kind of feat in itself that we know that people are finding the right kinds of matches and then having really fruitful conversations. So that’s wonderful. But what we wanted to use this time for is I guess to kind of tweak, iterate and optimise the app so that once it is kind of released globally, it’s as fit for purpose as it possibly can be, and it’s doing the best job for the community. So we do just a survey a month with the people that are using it and we’ll do that for the next couple of months. We’ve already had one and a lot of that is about functionality – is it working? Are you having any bugs or things that we need to fix?
Sam
Did you ask people to try and deliberately break it, because that sounds like it could be fun.
Olivia
I think some people have just tried to deliberately to be honest, I didn’t even need to ask, but we have had like a couple of little things, but I’m pleased to say no major bugs thus far. Touch what she says. So that’s doing great, but then the more people are using it, the more they are having ideas about what could make things better.
Sam
So can you say on your profile that you’re going to have a stoma and you want to be matched with somebody who already has one, so that you have pairings of somebody who has something they want to know that they don’t know…
Olivia
Absolutely.
Sam
…And somebody who does know the thing, rather than having two people put together who actually both want to know something and neither have the answer.
Olivia
Absolutely. So when you fill out your profile information, there is a question about whether you have a stoma right now. So like yes; no but I will in the future; no but I did in the past, because this is also very relevant for people who’ve had reversals and still want to be a part of the community and have a conversation around that. And then when it comes to what you’re looking for in a potential match, you can say I want someone who’s at the same stage as me. So perhaps you’re pre-surgery and you actually want someone who’s also pre-surgery so you can go through it together. Or I want someone who’s further ahead than me who can actually answer all my questions, negate my fears, give me some advice. And then those people will have also filled out a form to say whether they would like to be matched with somebody who wants advice, and they really feel like they have loads of to share and a lot of people have said there’s so much I learned through my experience when I was by myself that I wanna give to other people so they don’t have to go through. That to a lot of people have signed up to the app solely for that, so it’s actually a perfect match for a lot of these people.
Sam
Well, that’s great. So people can take on a kind of mentoring role if they want to.
Olivia
Exactly, yeah.
Sam
And it’s so good to just have people involved in this process and having like the beta testing rather than sort of going straight to launch and that’s kind of why I wanted to kind of chat about it on this podcast because being Patient and Public Involvement Manager, it’s just another way of kind of getting people involved. OK, maybe it’s not sort of strictly sort of research as such, but still, you know, addressing the need in in the community. So yeah, I think it’s well aligned and Bowel Research UK has worked with Ostique in the past as well. Unfortunately before my time. But I know that we did some patient and public involvement around sort of developing what I have seen are absolutely beautiful bags. I think the stoma bags are just so pretty.
Olivia
Thank you. Yes, we did work, it was actually before my time here as well. But Stephanie, our founder and Tony, our CEO and they did work with your teams quite a lot and got a huge amount out of it as well, so the work that you guys do is also incredibly invaluable in developing products and also services for companies like us so. Thank you.
Sam
Well, I hope that the app is well received when it’s when it’s launched. It sounds like it’s all going really well. So when is the launch planned for?
Olivia
So. Sometime early summer. We don’t have an exact date yet, but if you follow us on Instagram, we will be announcing the app launch date then or if there’s someone that wants to ask a specific question about the app, please feel free. You can reach out at office at Ostique.co.uk and we can answer any specific questions about that as well. But yeah, early summer – we just want to make sure we capture all of the amazing insight and suggestions that the people on the beta app have given us and make sure it’s the best it possibly can be before it launches.
Sam
Well, thanks so much for coming on to the podcast.
Olivia
Thank you for having me.
Sam
Thank you for listening to Can I Butt In? This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.