Latest / Beyond the Pouch / EP17: Ru’s Stoma Journey & Advocating Online

Transcript

EP17: Ru’s Stoma Journey & Advocating Online · Beyond the Pouch

• 0:00
  SPEAKER_02: You're someone that I i I think is safe to say is very well respected in the stoma community.
• 0:05
  SPEAKER_03: So I was diagnosed with osteopolitis, and I guess I suffered from the typical symptoms.
• 0:12
  SPEAKER_03: Um urgency um anxiety fit in my toilet lots of times per day.
• 0:18
  SPEAKER_03: But then unfortunately I collapsed at home with a big bleed where they discovered that I had a tumour in the cogon.
• 0:26
  SPEAKER_02: And that that must have been such a scary time.
• 0:28
  SPEAKER_03: Do you know what?
• 0:29
  SPEAKER_03: I I woke up and I immediately knew.
• 0:33
  SPEAKER_03: I just put my hand down and felt the bag and just kind of said, okay, so that's happened then.
• 0:38
  SPEAKER_03: You know, obviously obviously at the time when it first happens, it's it's a lot to get your head around, a lot to accept.
• 0:44
  SPEAKER_03: But then you kind of reach this point where you go, actually, I feel healthier than I did before.
• 0:53
  SPEAKER_02: Welcome back for another episode of Beyond the Pouch.
• 0:56
  SPEAKER_02: If you haven't caught up with our episodes lately, please head over to Spotify or YouTube to catch up.
• 1:01
  SPEAKER_02: Today I am absolutely thrilled to be welcoming our friend Rue.
• 1:07
  SPEAKER_02: It has been a long time coming.
• 1:09
  SPEAKER_02: You are someone we have wanted on since season one, and you're going to be sharing with us your stoma journey and your fitness stuff.
• 1:16
  SPEAKER_02: And yeah, I am absolutely bursting.
• 1:18
  SPEAKER_02: Hello, hello, friend.
• 1:20
  SPEAKER_03: Hey there, how's it going?
• 1:21
  SPEAKER_02: Good.
• 1:22
  SPEAKER_02: So you couldn't come here in person, unfortunately, but we've got you through the power of Zoom.
• 1:28
  SPEAKER_03: The internet.
• 1:28
  SPEAKER_02: The internet.
• 1:29
  SPEAKER_02: You're looking very sharp.
• 1:30
  SPEAKER_02: How are you?
• 1:32
  SPEAKER_03: I'm okay, thanks.
• 1:33
  SPEAKER_03: Been looking forward to this.
• 1:34
  SPEAKER_02: Yeah.
• 1:35
  SPEAKER_03: How are you two doing?
• 1:37
  SPEAKER_02: Good, good.
• 1:38
  SPEAKER_02: So, yeah, I mean, you're someone that I I think it's safe to say is very well respected in the stoma community online for your content, your approach to things.
• 1:49
  SPEAKER_02: But like myself, your stoma didn't come from a typical place that we see a lot of with people's journeys.
• 1:56
  SPEAKER_02: So could you share with us how it came about?
• 2:00
  SPEAKER_03: Yeah, sure.
• 2:01
  SPEAKER_03: Um, so I was diagnosed with ulcerative colitis in 2005.
• 2:07
  SPEAKER_03: Um, and I guess I suffered from the typical symptoms.
• 2:12
  SPEAKER_03: Um, so urgency, um, anxiety, phystimatoilate lots of times per day.
• 2:18
  SPEAKER_03: Um, and that kind of progressed, and I started off taking mesalazine and then went onto steroids and then immunosuppressants over the course of about eight years.
• 2:31
  SPEAKER_03: Um and then I think it was 2013.
• 2:36
  SPEAKER_03: Uh, my weight suddenly started dropping off, and I started to get night sweats.
• 2:40
  SPEAKER_03: Um, started to get quite concerned because uh I was experiencing some different symptoms.
• 2:46
  SPEAKER_03: I went to AE a couple of times, um, but they kind of said it's it's probably just your IBD showing in in different ways, just try and hold on till your next appointment.
• 2:56
  SPEAKER_03: Um, but then unfortunately, I collapsed at home with a big bleed, um, got taken into hospital where they discovered that I had a tumor in the colon, uh, which turned out to be Nun Hodgkin's lymphoma.
• 3:09
  SPEAKER_03: So when I started the chemo for that, within probably four to six hours, um, the bell perforated, and that was the end of that.
• 3:21
  SPEAKER_03: Um and so I was told at the time it would probably be permanent, um, which in a way was probably a good thing because I haven't really had to consider the possibility of reversal, just had to kind of accept it from the start.
• 3:35
  SPEAKER_02: Yeah.
• 3:37
  SPEAKER_02: And that that must have been such a scary time for you and your family.
• 3:41
  SPEAKER_03: Yeah, it wasn't ideal.
• 3:43
  SPEAKER_03: Um, and the the timing wasn't great because we'd just had our first child and she was about three weeks old when this happened.
• 3:53
  SPEAKER_03: So uh yeah, quite a traumatic time and a difficult first year, especially as I was sort of going through the chemo and getting used to everything.
• 4:02
  SPEAKER_00: Did you have the full proctectomy surgery and the stoma done at the same time?
• 4:08
  SPEAKER_03: Or do you still No, just uh subtotal colectomy.
• 4:13
  SPEAKER_03: So I haven't had the proctectomy surgery.
• 4:16
  SPEAKER_03: And that's something that I've discussed um with my consultant.
• 4:21
  SPEAKER_03: Um, but they kind of feel that the the risk of doing the surgery probably outweighs the risk of of not doing it, if you see what I mean, because there's so little left behind.
• 4:33
  SPEAKER_00: Okay, and you don't have any um you don't suffer with regards to anything like diversion colitis or have any issues with the back end.
• 4:43
  SPEAKER_03: No, look luckily, um like after recovering from the surgery, I don't really suffer from any IBD or UC related symptoms anymore, which uh I know is uh a privileged position to be in.
• 4:57
  SPEAKER_02: I mean your the way you talk about your your experiences, you I I think it's safe to say that you've got quite a realistic approach to it and your content is very factual, it's to the point, but also it's quite positive, I think.
• 5:13
  SPEAKER_03: I think it can be because I'm largely positive about it.
• 5:17
  SPEAKER_03: Um I think it's sometimes it's easier to accept this kind of surgery when you come from a long period of ill health because you can actually see a benefit.
• 5:28
  SPEAKER_03: Whereas if you have to have the surgery for a different reason, that might not be the case.
• 5:32
  SPEAKER_03: So, you know, obviously obviously at at the time when it first happens, it's it's a lot to get your head around, a lot to accept.
• 5:38
  SPEAKER_03: But then you kind of reach this point where you go, actually, I feel healthier than I did before.
• 5:43
  SPEAKER_03: And and that certainly helps with the acceptance process.
• 5:46
  SPEAKER_02: I mean, did you were you aware of Stoma's much before you know your diagnosis?
• 5:52
  SPEAKER_02: Did you know much about them, know what they looked like?
• 5:55
  SPEAKER_03: Had no idea.
• 5:57
  SPEAKER_03: I think when I was first diagnosed, I was given a leaflet or a booklet or something, and it kind of went through the various treatments and then said something like, and if all of that fails, you might have to have surgery.
• 6:12
  SPEAKER_03: And I just thought, well, that's not gonna happen.
• 6:14
  SPEAKER_03: So I chucked it in the bin and didn't really think about it.
• 6:17
  SPEAKER_03: Um and so yeah, because it was emergency surgery, I didn't have that sort of pre-op meeting where you get to have a look at the bag and have a little stick on stoma and sort of get used to how it might look and feel.
• 6:29
  SPEAKER_03: Yeah.
• 6:29
  SPEAKER_02: How was it?
• 6:32
  SPEAKER_03: Um do you know what?
• 6:34
  SPEAKER_03: I I woke up and I immediately knew.
• 6:37
  SPEAKER_03: I just put my hand down and felt the bag and just kind of said, okay, so that's happened then.
• 6:43
  SPEAKER_03: Um I I think I I think I knew when I was in intensive care that it was probably gonna happen.
• 6:51
  SPEAKER_02: Oh gosh.
• 6:52
  SPEAKER_02: And when you vent I mean, how long were you in hospital for until you got home and then had to kind of start dealing with things independently?
• 7:02
  SPEAKER_03: Um I was in hospital for about two weeks, I think.
• 7:07
  SPEAKER_03: Um and then came home, recovered for a bit, started chemo, and I was in and out to have chemo, and then I had some infections during that and a couple of blockages as things sort of settled down.
• 7:22
  SPEAKER_03: Um but then I think uh after the first year or so had passed, things like really settled, and since then I've been very lucky.
• 7:30
  SPEAKER_00: How did you manage your stoma during the chem uh the chemotherapy?
• 7:34
  SPEAKER_00: Because obviously output can change.
• 7:36
  SPEAKER_00: You can have issues obviously with regards to base plates stick in, leaks.
• 7:41
  SPEAKER_00: So, how did you manage both?
• 7:43
  SPEAKER_03: I remember at that time I was still using the bag that I was given um sort of after the surgery.
• 7:50
  SPEAKER_03: Oh, the stoma nurses just decide to give you.
• 7:53
  SPEAKER_03: Um and in the first year I definitely had way more leaks and problems than I've had ever since, if I were to combine like the the next nine years.
• 8:06
  SPEAKER_03: I think because it probably wasn't the right product for me, didn't know what I was doing, was always pushing it because I just didn't really like dealing with it or changing the bag.
• 8:17
  SPEAKER_03: So I'd I'd push and push and then it would leak and then that would annoy me.
• 8:22
  SPEAKER_03: Um so yeah, I think it was a it was a struggle, and the chemo definitely did affect the way that the bell behaved.
• 8:30
  SPEAKER_03: Um definitely had some difficult times.
• 8:33
  SPEAKER_02: Did did you get much support with that?
• 8:35
  SPEAKER_02: I mean, how involved were, if any, stoma nurses with that process during the chemo?
• 8:41
  SPEAKER_03: Um not as much as I think other people uh seemed to receive.
• 8:45
  SPEAKER_03: I had some support when I switched products um to one that suited me better.
• 8:49
  SPEAKER_03: Um but once I settled down with that, I kind of felt self-sufficient and I didn't really reach out, but then also nobody really reached out to me either to check on me.
• 8:59
  SPEAKER_02: I mean, Rue, in your case, have you how long have you been using the bags that you have?
• 9:04
  SPEAKER_02: Like have has it has it lasted you all this time the last nine years, or have you had to make a switch?
• 9:10
  SPEAKER_03: Uh no, I've stayed with pretty much the same products for the last nine years.
• 9:15
  SPEAKER_03: And I have um switched up some of the accessories.
• 9:19
  SPEAKER_03: So I I found that um the extenders are really useful, especially when exercising.
• 9:25
  SPEAKER_03: But aside from that, I've pretty much stayed with the same setup.
• 9:28
  SPEAKER_00: It still boggles my mind that they're classed as as an accessory and not a just a stoma product.
• 9:34
  SPEAKER_00: It really does.
• 9:36
  SPEAKER_02: It makes it sound like you're just adding a scarf on, doesn't it, or something?
• 9:39
  SPEAKER_00: New bag.
• 9:40
  SPEAKER_02: Yeah, yeah, yeah.
• 9:41
  SPEAKER_02: New belt.
• 9:42
  SPEAKER_02: I mean, you're you're you post a lot of your runs, you're very active as an individual, and I think that's one thing post-surgery that a lot of people are quite anxious about getting back to is fitness.
• 9:54
  SPEAKER_02: I mean, how did you approach it after all you'd been through?
• 9:58
  SPEAKER_03: It took a lot of time um because I was going through the chemotherapy and I definitely had a few setbacks.
• 10:07
  SPEAKER_03: And when I did start running again, I was I literally had to start from nothing.
• 10:13
  SPEAKER_03: I remember putting on my trainers and thinking I'll I'll just go and run for like a couple of kilometers and I headed out the door and did about a minute and I was completely exhausted.
• 10:25
  SPEAKER_03: Yeah, um, and I couldn't try again for about a week.
• 10:28
  SPEAKER_03: But then over the following couple of months, it it did start to come back.
• 10:34
  SPEAKER_03: Um, I think you just have to be realistic, you know, you have to accept that you've been through a lot, and you might see somebody else who can go and crack out 10k six weeks after their surgery, that's great for them.
• 10:46
  SPEAKER_03: But if it takes you a year to get to get back or or to get started, then that's fine too.
• 10:52
  SPEAKER_02: I mean, any movement is positive, isn't it?
• 10:54
  SPEAKER_02: Whatever it is.
• 10:56
  SPEAKER_03: Yeah, I mean, I think you have to be careful and you have to wait until you get the the okay from your medical team.
• 11:04
  SPEAKER_03: Um certainly don't want to be sort of heading straight to the gym and smashing out a bunch of weights.
• 11:09
  SPEAKER_03: Um, but I think it's it's definitely good to get active if you can.
• 11:15
  SPEAKER_03: I think as well when you're in hospital recovering, um, as you'll both know, the the team try and sort of get you standing and get you hobbling about a bit and try and get get you moving, I guess, for for various reasons.
• 11:28
  SPEAKER_02: I mean, for you, Rue, with you know, when you woke up with that surgery and you you must have had the clear bag so that you could see the stoma, you s you touched upon that you pushed it a bit because you didn't want to have to change it.
• 11:42
  SPEAKER_02: And can you talk us through how you went from feeling like that to where you are today?
• 11:49
  SPEAKER_02: For anyone in that same position, just struggling a bit mentally?
• 11:53
  SPEAKER_03: Just time, I think.
• 11:54
  SPEAKER_03: Um you know, immediately after surgery, everything looks and feels very different to how it does once it's settled down.
• 12:03
  SPEAKER_03: Um, and as we discussed, the the products that you that you at first given probably not are the right ones for you.
• 12:11
  SPEAKER_03: Um it takes a little while to just develop the confidence to deal with it, but also just to be able to look in the mirror and accept it as well.
• 12:20
  SPEAKER_03: Um accept what's been taken away, but accept what's been given back to you as well.
• 12:26
  SPEAKER_02: And that's what you're really realistic about, isn't it?
• 12:29
  SPEAKER_02: I mean, you're I'm gonna touch upon social media again, and we do talk about a lot of it on this podcast because that's how a lot of us connect and get to know pe like-minded people.
• 12:39
  SPEAKER_04: Yeah.
• 12:39
  SPEAKER_02: Um, but you, you know, you communicate your advice a lot sometimes through music, you play a bit of guitar, you do poetry, you're a a man of all different means of sharing your thoughts and feelings.
• 12:52
  SPEAKER_02: And men's mental health is something that is it's quite topical at the moment, as it should be always.
• 12:58
  SPEAKER_02: Um, and I think you're a really good advocate for that in sharing your feelings and the struggles.
• 13:04
  SPEAKER_02: And I think if there are men watching this right now, I mean, how from a man's point of view, how how can you push through those mental barriers of, you know, not wanting to share and not knowing where to turn?
• 13:21
  SPEAKER_03: I think men have a tendency to try to internalise things and sort of deal with their own worries in private.
• 13:29
  SPEAKER_03: Um and for some people, maybe that is the right coping mechanism, but I think others benefit from sharing in whatever way works for them.
• 13:40
  SPEAKER_03: So for some it's pictures or or reels or videos, or it can be writing a poem, um, just expressing yourself, not necessarily for other people's benefit, but but just you know, for you to find a way to let it out.
• 13:57
  SPEAKER_03: Um and then just connecting and not being embarrassed to sort of connect and and talk and share about things that typically people might not want to talk about.
• 14:06
  SPEAKER_03: I don't like to sort of just put a post out there for the sake of it.
• 14:11
  SPEAKER_03: And I guess now that I'm more than 10 years into having an ostomy and more than five years in on Instagram, I feel like I've said a lot of what I have to say.
• 14:22
  SPEAKER_03: Um, I'm I'm lucky that things aren't really changing for me.
• 14:26
  SPEAKER_03: My my health is in a good place and is stable, so I don't have a lot new to talk about.
• 14:30
  SPEAKER_03: Sometimes I think I should sort of go back around and recycle the ideas because somebody new might, you know, see it and it'd be beneficial to them.
• 14:39
  SPEAKER_03: Um, but then I just think you can't force it.
• 14:41
  SPEAKER_03: You know, I I have no reason to.
• 14:43
  SPEAKER_03: I'm not sort of trying to sort of build a big following or or sell anything.
• 14:48
  SPEAKER_03: Um, so I just sort of just do what I want, really.
• 14:52
  SPEAKER_02: You're very authentic with it.
• 14:53
  SPEAKER_02: You really are.
• 14:55
  SPEAKER_02: Um, and I mean when you do share things and go, oh, this is regurgitated stuff, but you know, it might help someone.
• 15:01
  SPEAKER_02: It a hundred percent is helping someone, definitely.
• 15:05
  SPEAKER_02: And you're also quite an active member of real life meetups, where you know, I know our friend Ant does a few in London, and we did one a few years ago in Birmingham, and we only recently saw each other a few, was it a few weeks ago?
• 15:21
  SPEAKER_02: A few weeks ago.
• 15:22
  SPEAKER_02: Yeah.
• 15:23
  SPEAKER_02: Yeah.
• 15:23
  SPEAKER_02: Um, I mean, I think it can be quite a scary thing to meet people in real life.
• 15:27
  SPEAKER_02: I know we see a lot of each other through pelican stuff, and there's a big group of us that do keep contact enough, you know, seeing each other physically.
• 15:36
  SPEAKER_02: But if there's anyone that's kind of hesitant to do that, I mean, like for instance, why do you do it?
• 15:44
  SPEAKER_03: Um, again, it's it's to help me um to feel less alone, I guess, because it helps to meet people in the flesh, not because you want to sort of go and look at their bag and compare it to your bag.
• 15:59
  SPEAKER_03: Uh if anything, it's the opposite.
• 16:01
  SPEAKER_03: It's it's more that you want to go and hang around with them and then not not even talk about it.
• 16:07
  SPEAKER_03: And it's just nice to see other people just living their lives and be able to go and have a good time with them, um, kind of in in spite of the the common illness or or uh operations that we've had.
• 16:21
  SPEAKER_02: Yeah, and that's that's a really valid point, and it because I mean you might assume that it's where we all get our bags out and compare and go, ooh, look at this.
• 16:28
  SPEAKER_02: Let's get it.
• 16:29
  SPEAKER_02: But that that doesn't, I mean, we don't stand next to each other and get our bags out and go, ooh, let's take a selfie, because that doesn't happen when we meet organically and it it's for friendship, it's for comfort, it's for, you know, it's not feeling so alone.
• 16:44
  SPEAKER_02: And I think for me, it's kind of gone the other way now, whereas I see people in real life my genuine friendships like yourselves, where, you know, I'm and it's and we, you know, we speak on WhatsApp and we I'm not contacting my my true friendships that I happen to have met in the community on Instagram.
• 17:07
  SPEAKER_02: If, you know, it'll be outside of that, or I'll see them in real life.
• 17:11
  SPEAKER_02: And I'll and I think it is it does take a while to find your people and the people that are genuine, but when you do, I think it is really special and it's and it's a really lovely thing.
• 17:21
  SPEAKER_02: And I think everyone does deserve that opportunity to find them people.
• 17:24
  SPEAKER_02: But like you said, you've got to be cautious, you've got to be realistic.
• 17:29
  SPEAKER_03: I think it's it's such a big community now that you have to expect that within that big community there will be little subcommunities that will have different ideas, um, different opinions or perspectives on what the what we should be doing and what we shouldn't be doing.
• 17:47
  SPEAKER_03: And I definitely went through a period where I would find it quite frustrating when I would see you know people who who maybe would be giving out a message that I didn't agree with.
• 17:58
  SPEAKER_03: Um, but I think I've just reached a point where I realise now that you can't stop it.
• 18:03
  SPEAKER_03: Um you have to just kind of ignore it and focus on the people that matter to you and the message that matters to you.
• 18:10
  SPEAKER_03: Um, because life's too short to be worrying about what other people on the internet might say.
• 18:15
  SPEAKER_02: Yeah, but I you know, I do hope that if anyone's watching this and are debating whether to meet people or connect with people, please don't let it put you off.
• 18:24
  SPEAKER_02: I mean, you you know, give it a try if your gut tells you it's the right thing to do, and if you genuinely think you, you know, you connect with people.
• 18:33
  SPEAKER_02: Um, but have you, it's about you as well.
• 18:35
  SPEAKER_03: Yeah, I mean I think what I would say is don't be put off from participating in the community or connecting with people just because you see some people who have different ideas to you um about you know life with a bag or the kind of things that you should post.
• 18:52
  SPEAKER_03: Um, you know, that's that's up to them.
• 18:54
  SPEAKER_03: You know, you do your thing and just connect with the people that share the same values.
• 18:57
  SPEAKER_00: You will find your people, yeah.
• 18:59
  SPEAKER_00: Sometimes it it it's like the case of uh kissing a few frogs and don't go around kissing everyone you meet people.
• 19:06
  SPEAKER_02: Don't that's not what these meetups are for.
• 19:11
  SPEAKER_00: But you you do get there, you do find your people.
• 19:14
  SPEAKER_00: It's just about you know, kind of having that being friends with people that have kind of got the same philosophy and the same kind of ethos towards life that you have.
• 19:25
  SPEAKER_02: And and it does tend to organically change into that you you d you don't talk about stoma stuff really.
• 19:32
  SPEAKER_02: Like, God, if people read our messages it it ain't nothing to do with stomas.
• 19:38
  SPEAKER_01: That's for sure, and we even work together on a stoma podcast.
• 19:43
  SPEAKER_03: Um I mean it might it might be what connects you, it might be what you initially find you have in common, but then it you know it very quickly goes way beyond that.
• 19:52
  SPEAKER_03: I mean um and I think you know, as as you were saying, Louise, I've tried to step back a bit as well.
• 19:58
  SPEAKER_03: I I don't do anywhere near as much as I used to, um, because I've found that when I'm not on Instagram, really like the the stoma is such a small part of my life.
• 20:11
  SPEAKER_03: I don't really think about it, it's just part of the routine.
• 20:14
  SPEAKER_03: And in fact, the time when I think most about my illness is when I'm on Instagram, um, you know, doing doing bits on there.
• 20:20
  SPEAKER_03: You know, when I'm not doing that, I'm not really thinking about it.
• 20:23
  SPEAKER_02: Yeah.
• 20:24
  SPEAKER_02: I mean, when you started sharing, I mean, what was your reason for you for that?
• 20:32
  SPEAKER_03: Um, it was to try and help somebody who might have been in my position when I woke up with a stoma and didn't know where to go.
• 20:41
  SPEAKER_03: Because that would have been 2014, and this community I don't think really existed, or if it did, I certainly didn't find it.
• 20:48
  SPEAKER_03: There were a couple of people, um, sort of the more well-known people um who you could sort of take some inspiration from.
• 20:56
  SPEAKER_03: But I just wanted to be somebody who could be a normal guy who can be relatable.
• 21:01
  SPEAKER_03: And apparently.
• 21:02
  SPEAKER_03: And I could say I was in your position five year five years ago, and now I'm just like doing normal things.
• 21:07
  SPEAKER_03: Yeah.
• 21:07
  SPEAKER_03: Be that running, holidaying, parenting, working.
• 21:10
  SPEAKER_02: I mean, you have a very full life, you've got a very high, you know, you've got a high pressure job, you've got children who are fairly young, you know, you're but you're still your stoma, is it fair to say it isn't holding you back?
• 21:23
  SPEAKER_03: It's it's the opposite.
• 21:25
  SPEAKER_03: And sometimes I consider how I would have been able to parent if I hadn't had the surgery, because I was in a really bad way leading up to Lily being born.
• 21:36
  SPEAKER_03: Um, and I can't imagine how I would have been able to sort of chase her around as a a baby or a toddler when I had to then run the other way back to my toilet 30 times a day.
• 21:44
  SPEAKER_04: Yeah.
• 21:45
  SPEAKER_03: Um I think it would have been really, really difficult.
• 21:48
  SPEAKER_03: So massive respect to anybody who is is doing that at the moment.
• 21:51
  SPEAKER_03: Um, but I think it actually helped me to be a fully participating parent.
• 21:57
  SPEAKER_03: You know, I didn't uh I had no excuses.
• 21:59
  SPEAKER_03: I Had to do with soft play and crawl around doing all that nonsense.
• 22:02
  SPEAKER_02: Oh, that's nice to see a dad say that, innit?
• 22:05
  SPEAKER_02: But so many dads, not talking about my partner, but so many would be like, oh no, no, no.
• 22:11
  SPEAKER_02: I I gotta work, I'm not doing softly.
• 22:13
  SPEAKER_03: Well no one likes soft play, do they?
• 22:15
  SPEAKER_00: No, they don't.
• 22:16
  SPEAKER_00: Who as hell?
• 22:17
  SPEAKER_00: It's a walking uh jam incubase, especially those of those that are immunocompromised.
• 22:24
  SPEAKER_02: Oh gosh.
• 22:25
  SPEAKER_02: I mean when you and now that your kids are a lot older and they obviously know you have a bag, what how uh you know do they when they were old enough to would they ask you what it was?
• 22:36
  SPEAKER_02: How how would you share that and involve them in that, if at all?
• 22:41
  SPEAKER_03: They're completely they're completely indifferent.
• 22:44
  SPEAKER_03: I think because it's always been there, um, they just see it as completely normal.
• 22:50
  SPEAKER_03: And I have explained what happens to Lily, and she kind of took it in and kind of said, fine, fair enough.
• 22:59
  SPEAKER_03: Um, and my son Alfie is kind of a bit of oblivious to be honest.
• 23:04
  SPEAKER_03: No, um, and I don't want to force it down their throats because a time will come when they want to know more, and when that time comes, I'm happy to share.
• 23:10
  SPEAKER_00: I'm glad.
• 23:11
  SPEAKER_03: But right now, just just happy to yeah, happy, happy it doesn't bother them.
• 23:15
  SPEAKER_00: Yeah, I'm glad Maisie's a teenager because child Maisie for primary, I was her show and tell.
• 23:22
  SPEAKER_00: Teenage, teenage Maisie.
• 23:25
  SPEAKER_02: That's so lush though that she wanted to do that.
• 23:28
  SPEAKER_00: Yeah, all of her friends follow my Instagram account, so I have to be very careful what I post up these days.
• 23:33
  SPEAKER_02: But that that how lush is that?
• 23:35
  SPEAKER_02: She's a teenager, and inmates are following you.
• 23:37
  SPEAKER_02: That I'd be like buzzing, yes.
• 23:39
  SPEAKER_00: I could just imagine the email from the school counselor.
• 23:42
  SPEAKER_00: By the way, most of Maisie's friends follow you on school follow you and they've been talking about your account.
• 23:46
  SPEAKER_00: You might want to refrain from posting.
• 23:48
  SPEAKER_00: Really?
• 23:49
  SPEAKER_00: Okay.
• 23:50
  SPEAKER_00: Um but like you say, it's such a normal part.
• 23:54
  SPEAKER_00: Maisie doesn't f blink twice at me running about in a baggy t-shirt with my bag hanging out and and and Nick was running about the house.
• 24:03
  SPEAKER_00: She wouldn't go, Oh mum, put your bag away.
• 24:05
  SPEAKER_00: It's just normal.
• 24:07
  SPEAKER_00: So that's a good thing.
• 24:09
  SPEAKER_02: I mean, in my house, as you both know, three or four of us have a bag.
• 24:13
  SPEAKER_02: It's like Luke's weird not having one.
• 24:15
  SPEAKER_03: Bags everywhere.
• 24:16
  SPEAKER_02: I mean, it's so that like Jake would say to me, why doesn't Luke have one?
• 24:20
  SPEAKER_02: Why what when's he getting here?
• 24:21
  SPEAKER_02: So I'm like, well, it's you know, that then that's a difficult one because you know, on the tip of my tongue is, well, you know, you you you don't choose to have one, but I'm I'm not gonna say that because that's that's kind of a sounds are quite negative.
• 24:35
  SPEAKER_02: But you know, for them too, it is absolutely normal when they grow up and they realise not everyone has one, they're gonna think that's weird.
• 24:43
  SPEAKER_00: I mean, Rui, do you think that there that you've been tackling the stigma that's around stomas and stoma life as a general, or do you feel that there really isn't a zig a stigma?
• 24:54
  SPEAKER_00: Oh, good, cool.
• 24:57
  SPEAKER_03: Yeah, it's a tricky one, because I know people disagree on this, but I don't I don't really feel stigmatized.
• 25:04
  SPEAKER_03: I don't feel that there is a stigma.
• 25:06
  SPEAKER_03: I think that not everyone in the whole world is aware of what a stoma is, just like many people aren't aware of lots of things.
• 25:13
  SPEAKER_03: Um, and so it's it's good if we can all do work to help people understand what a stoma is.
• 25:21
  SPEAKER_03: Um, but I don't feel as though the initial and immediate reaction is is one of disgust.
• 25:27
  SPEAKER_03: If anything, it's the opposite.
• 25:28
  SPEAKER_03: I think people are just generally interested and um kind kind of amazed that you can go through this kind of surgery and then be living a full and happy life.
• 25:38
  SPEAKER_00: I think most people, um I mean I know from those that I've met like when I go on holidays, so it's more like morbid curiosity than anything else, rather than it's not a disgust and oh my god, what is that?
• 25:50
  SPEAKER_00: It's more of a what's that?
• 25:55
  SPEAKER_03: I think you know, peep people obviously do have these difficult and upsetting situations where people will give them a funny look if they use a disabled toilet uh or might, you know, pass a nasty comments.
• 26:09
  SPEAKER_03: But I think sadly, there are just some people in the world who are like that.
• 26:13
  SPEAKER_03: And if they weren't doing it about the fact that you were using a disabled toilet, they might find something else to pick on.
• 26:19
  SPEAKER_03: And so when I see you know trolls kicking off on Instagram, um, I don't think there's any point in trying to educate them because they're not interested.
• 26:27
  SPEAKER_03: It's it's not where they don't understand, it's just they're who they are.
• 26:30
  SPEAKER_03: They're people they're people there who are just trying to pick a fight and they'll find someone to pick a fight with.
• 26:34
  SPEAKER_00: Do you know what though?
• 26:35
  SPEAKER_00: I don't think I've ever been trolled.
• 26:36
  SPEAKER_00: Not like not like that.
• 26:38
  SPEAKER_00: Admittedly, I don't use it so much now, but I know that people used to report for videos that I posted up for bag changes, they'd report it as um harmful content.
• 26:51
  SPEAKER_00: But to actually like physically be trolled and have somebody put something really hurtful in the comments.
• 26:57
  SPEAKER_00: That's not really happened.
• 26:59
  SPEAKER_00: But yet again, you know, that there's a stigma attached to a stoma, but you having a stoma doesn't naturally make you stigmatized.
• 27:12
  SPEAKER_00: It's how you view it and how you teach those around you to view things the same as you know, uh what's it?
• 27:21
  SPEAKER_00: I was Maisie was saying to me about uh um being Albeist.
• 27:25
  SPEAKER_00: So the whole, you know, that there is a um an Albeist view sometimes towards disability because there's been the disabled uh sign on the toilet for so many years, which is perceived for people with a wheelchair, you know, that there is there is an Albeist view towards uh being uh disabled.
• 27:45
  SPEAKER_00: It's just as to whether or not uh uh the hidden uh disabilities are made more prominent.
• 27:53
  SPEAKER_00: You know, there's a there's a stigma to a hidden invisible illness.
• 27:57
  SPEAKER_00: There's not actually a stigma towards being disabled.
• 28:01
  SPEAKER_00: The stigma is towards those that don't look outwardly disabled.
• 28:06
  SPEAKER_00: That's where the stigma is attached.
• 28:09
  SPEAKER_03: It's almost a lack of trust thing.
• 28:10
  SPEAKER_03: It's like people somehow think you might be taking advantage or using something that you shouldn't because they they can't see the reason why you actually are entitled to, which is uh it's it's kind of a shame.
• 28:20
  SPEAKER_03: It's a reflection on society, really, rather than any particular person.
• 28:25
  SPEAKER_03: But when I have seen trolling on Instagram, it's it's always been, you know, when somebody with a big following has posted something and it's kind of blown up and it's reached, you know, 10 million people.
• 28:35
  SPEAKER_03: If you reach 10 million people, you're gonna find a few in there who are gonna troll you, and it wouldn't matter what the video was about, they would have something nasty to say.
• 28:44
  SPEAKER_02: Yeah, so I I think I shared the other day about how um I was going into uh disabled changing rooms in the local swimming pool with my eldest.
• 28:54
  SPEAKER_02: Um because after swimming, he has to have his bag changed, he has to shower, because the bag won't stick properly unless you've washed the chlorine off.
• 29:01
  SPEAKER_02: Um the type of bag he has, the you know, the base is porous, so the chlorine does get on the skin.
• 29:08
  SPEAKER_02: Um and our and an elderly woman came up behind us and said, No, you don't need to use that toilet, I'm using it.
• 29:14
  SPEAKER_02: I said, um no, we we are actually sorry, but you're gonna have to wait.
• 29:18
  SPEAKER_02: And he was dripping wet.
• 29:19
  SPEAKER_02: He need his class was getting dressed in the ever changing room.
• 29:22
  SPEAKER_02: I had to do him separately, of course.
• 29:24
  SPEAKER_02: And I said, No, he I need to use this.
• 29:26
  SPEAKER_02: She went, he doesn't need to.
• 29:28
  SPEAKER_02: I said, Well, he does actually, he has every right to use it as much as you.
• 29:31
  SPEAKER_02: She had a walk-in frame, I'm assuming it was a mobility thing that she was dealing with, and she she wouldn't take no for an answer.
• 29:38
  SPEAKER_02: She would not believe that my child needed to use them toilets, and that's the first time my son's ever seen anything like that or experienced anything like that, and he's eight now, and then I had to have that, you know, difficult conversation with him, unfortunately.
• 29:53
  SPEAKER_02: But this isn't gonna be the last time you are gonna experience this.
• 29:56
  SPEAKER_02: She wasn't horrible, she was rude, but she wasn't nasty.
• 30:00
  SPEAKER_02: Um yeah, I mean, and also I had to be careful, there were lots of primary school children about.
• 30:04
  SPEAKER_02: I couldn't say what a a protective mother wanted was thinking in that to tone it down.
• 30:11
  SPEAKER_02: Yeah.
• 30:11
  SPEAKER_02: Um, but no, I I just corrected her and we went in the toilet, she spent the whole time um what's the polite word?
• 30:20
  SPEAKER_02: Um muttering.
• 30:21
  SPEAKER_02: Yes, about us, the other side of the door.
• 30:23
  SPEAKER_02: My child heard it all.
• 30:24
  SPEAKER_02: It was horrible.
• 30:26
  SPEAKER_02: So I had to explain to him about when we meet people like this, you have to be gracious, raise above it, kill her with kindness, not literally killing her, but you know what I mean.
• 30:36
  SPEAKER_02: Um and then when we went out of the loo, she was like, she was so angry that she really truly believed I just used that toilet just for giggles because I wanted to, not because we needed to.
• 30:49
  SPEAKER_02: And I just said, Would you like a hand with your bag?
• 30:51
  SPEAKER_02: Um and she went, Oh, oh yes, actually, yes.
• 30:54
  SPEAKER_02: And then then she said, Oh, well, I know what you're going through because I was a special educational needs teacher for years.
• 31:00
  SPEAKER_02: I went, Oh wow, that must have wow, bet you were.
• 31:02
  SPEAKER_02: All right then.
• 31:03
  SPEAKER_02: And I really had to keep my mouth shut.
• 31:06
  SPEAKER_02: And and yeah, like I said to him, it won't be the last time.
• 31:09
  SPEAKER_02: And like you said, we we all experienced something like that at some point.
• 31:13
  SPEAKER_02: And like you said, Rue, if it's not that people are gonna have a something about, it's something else.
• 31:19
  SPEAKER_00: I think that mm the main ethos in life is to treat someone how you would expect to be treated.
• 31:24
  SPEAKER_02: Well, I wouldn't say that to a child.
• 31:26
  SPEAKER_02: I wouldn't do that in front of a child.
• 31:27
  SPEAKER_02: I don't know why she thought that's okay.
• 31:29
  SPEAKER_00: I treat everybody kindly, so I do my best to treat everybody kindly.
• 31:33
  SPEAKER_00: I wouldn't be nasty to someone, I wouldn't say someone coming out of a disabled loo or going into a normal loo.
• 31:38
  SPEAKER_00: Oh, you shouldn't be using that.
• 31:40
  SPEAKER_00: The end of the day, you you give kindness to receive kindness, and you know, everyone, typical British of stiff off the lip and not saying anything.
• 31:50
  SPEAKER_00: It's just more of a case of showing a bit of love and being a bit kind.
• 31:56
  SPEAKER_00: Oh, yeah.
• 31:57
  SPEAKER_02: Well, well, Rue, it's um I kind of want to finish with, you know, what advice you would have to anyone that is is really struggling right now, listening to this and thinking, you know what, I I am really struggling to see the light at the moment with with my stoma.
• 32:14
  SPEAKER_02: What would you I've such an open-ended question, but what would your advice be?
• 32:19
  SPEAKER_03: I mean, none of us can deny that it's a life-changing event and things will be different following surgery, but that doesn't necessarily mean they'll be worse or that they will not improve over time.
• 32:33
  SPEAKER_03: You know, how you feel straight after your operation, you know, can be very different to how you feel a few months down the line as you kind of learn how to navigate ostomy life and find the right products for you and also the people that you can connect with who can give you advice and can kind of uh you can relate to when things are difficult.
• 32:52
  SPEAKER_03: It means a lot if you know you can connect with someone who's been through the same difficult times and has come through them.
• 32:58
  SPEAKER_03: So I think just uh sort of try and trust the process, find your subcommunity if you can, and and lean on lean on them for for help and for guidance.
• 33:11
  SPEAKER_02: Oh well, I think it's safe to say that you are one of the best people out there.
• 33:15
  SPEAKER_02: You are a diamond.
• 33:17
  SPEAKER_03: Thank you very much.
• 33:18
  SPEAKER_00: Positive role model who doesn't receive compliments very well from the two.
• 33:23
  SPEAKER_03: Yeah, do I look uncomfortable?
• 33:24
  SPEAKER_03: I'm struggling about that.
• 33:27
  SPEAKER_00: You're gonna be pink there in the cheeks, okay?
• 33:32
  SPEAKER_00: Oh, so we would like to say thank you all uh for listening to Beyond the Pouch, and we hope you enjoyed listening and have taken away something from Rue's journey.
• 33:43
  SPEAKER_00: And um, yeah, we'll be back again with another episode soon.
• 33:47
  SPEAKER_00: So thanks, Rue.
• 33:48
  SPEAKER_00: Thank you.
• 33:49
  SPEAKER_00: Thank you so much.
• 33:50
  SPEAKER_00: Thanks.