Latest / Beyond the Pouch / E2: Phillipa Opens Up About Almost Losing Her Life, Travelling With A Stoma & Changing Her Bag At 38,000 Feet

Transcript

E2: Phillipa Opens Up About Almost Losing Her Life, Travelling With A Stoma & Changing Her Bag At 38,000 Feet · Beyond the Pouch

• 0:00
  SPEAKER_01: Hey and welcome to Beyond the Pouch, a podcast series brought to you by Pelican, Respond and Ekin, where your hosts, Rachel and Louise, dive into the world of Ostomy through open and honest conversations, including the lives of many inspirational ostomates, so you can get to know them beyond the pouch.
• 0:21
  SPEAKER_04: Hi guys, we're back for our second episode of Beyond the Pouch.
• 0:24
  SPEAKER_04: We've been blown away, haven't we, by the response of the first episode?
• 0:28
  SPEAKER_04: It's been amazing.
• 0:28
  SPEAKER_04: It's been amazing, and we're really, really excited for our first guest who I'm looking at her right now.
• 0:35
  SPEAKER_04: She is the queen of forward roles.
• 0:38
  SPEAKER_04: She has the most beautiful Liverpoolan accent, and she is the glorious Pip Philippa.
• 0:43
  SPEAKER_04: Hello, hello.
• 0:46
  SPEAKER_04: How are you?
• 0:47
  SPEAKER_04: I'm good.
• 0:47
  SPEAKER_04: How is your journey?
• 0:48
  SPEAKER_04: Fab?
• 0:49
  SPEAKER_04: Because you've come all the way from Liverpool to Cardiff.
• 0:52
  SPEAKER_04: Yeah.
• 0:52
  SPEAKER_04: With your glorious boyfriend.
• 0:54
  SPEAKER_04: Fiancey! Yeah.
• 0:55
  SPEAKER_04: Fiance.
• 0:57
  SPEAKER_04: Mmm, crazy.
• 0:58
  SPEAKER_04: Thank you for coming for the first episode.
• 1:00
  SPEAKER_02: Of course, thank you for having me.
• 1:01
  SPEAKER_02: That's right.
• 1:01
  SPEAKER_02: We all met in the coffee shop, didn't we, before we came here?
• 1:04
  SPEAKER_00: That's nice there.
• 1:05
  SPEAKER_02: Mmm.
• 1:06
  SPEAKER_00: Yoga as well.
• 1:07
  SPEAKER_00: I know.
• 1:07
  SPEAKER_00: What was that about?
• 1:09
  SPEAKER_00: What while you're drinking coffee?
• 1:10
  SPEAKER_00: No, it's like it's downstairs.
• 1:12
  SPEAKER_00: Oh, well, it looked really quirky.
• 1:14
  SPEAKER_00: I really wanted to go and do a bit of yoga.
• 1:17
  SPEAKER_00: Oh, can you get a tattoo at the same time?
• 1:19
  SPEAKER_00: Oh no, that'd be oh, there's an idea.
• 1:21
  SPEAKER_00: There's an idea.
• 1:24
  SPEAKER_00: Yoga and tattoos, love it.
• 1:26
  SPEAKER_02: So obviously, we've known you for a while.
• 1:29
  SPEAKER_02: Yeah.
• 1:30
  SPEAKER_02: But your diagnosis was quite a while ago, wasn't it?
• 1:34
  SPEAKER_00: Oh, a long time ago, yeah.
• 1:35
  SPEAKER_00: Yeah, run us through it.
• 1:37
  SPEAKER_00: So I was diagnosed with Crohn's when I was nine, which was back in 2006.
• 1:44
  SPEAKER_00: It's a while ago.
• 1:45
  SPEAKER_00: And then when I was 14, I was diagnosed with ulcerative colitis as well.
• 1:50
  SPEAKER_00: So I've got the best about both worlds.
• 1:52
  SPEAKER_00: So yeah.
• 1:54
  SPEAKER_02: So that's have you got any stick online for that?
• 1:57
  SPEAKER_02: Because there are a lot of people that say that you can't have crying and ulcerative colitis.
• 2:01
  SPEAKER_00: I I get the odd comment and stuff, but it's it is what it is, isn't it?
• 2:06
  SPEAKER_00: Why would you think you can't have both?
• 2:09
  SPEAKER_00: Someone did say that to me, and you know, as if like they knew all about it when obviously they don't they've got one thing and you've just come out of a bad flair, haven't you?
• 2:20
  SPEAKER_04: Like literally just coming out of one, so it can just hit you at any time, can't it?
• 2:25
  SPEAKER_02: Oh yeah, definitely.
• 2:27
  SPEAKER_02: It's not fair, is it?
• 2:28
  SPEAKER_02: Because it's just Crohn's is bleeding difficult to live with at the best of times.
• 2:32
  SPEAKER_02: So and the fact that it just crops up out of nowhere as well.
• 2:35
  SPEAKER_00: It's stress related more with me what sets me off into a flare, which is really annoying.
• 2:40
  SPEAKER_00: So it could just be like the tiniest thing that sets me off, but it's stressful, but you get on with it.
• 2:47
  SPEAKER_04: How do you stop yourself from getting stressed then?
• 2:49
  SPEAKER_04: Do you have to consciously think about keeping yourself not stressed all the time?
• 2:52
  SPEAKER_00: Or is it just it depends what it is, but um so let me say, let me what's what did I do last year?
• 3:01
  SPEAKER_00: That I was I was I had a really bad flair last year.
• 3:05
  SPEAKER_00: And I daddy driving test, that's what it was.
• 3:08
  SPEAKER_00: So from that and it was stressful, yeah.
• 3:10
  SPEAKER_00: It was all exciting though as well, because it passed, but I was poorly for like a week.
• 3:15
  SPEAKER_04: So even just like happy stress, yeah, like anything, I suppose, that adrenaline or stress hormones is gonna make you have a flair.
• 3:25
  SPEAKER_04: Yeah.
• 3:25
  SPEAKER_04: Is that quite common?
• 3:26
  SPEAKER_04: Do you find that?
• 3:27
  SPEAKER_02: Yeah, it is it is a big factor.
• 3:30
  SPEAKER_02: I mean, you guys know I've not been out of hospital long myself.
• 3:34
  SPEAKER_02: No, no.
• 3:35
  SPEAKER_02: Pip's had a flair, I've been in hospital.
• 3:37
  SPEAKER_02: Rachel's still going.
• 3:39
  SPEAKER_03: It's alright, we're here.
• 3:41
  SPEAKER_03: We made it, we're fine, we got it.
• 3:43
  SPEAKER_02: I mean, uh how how have you found it?
• 3:45
  SPEAKER_02: Because obviously you're diagnosed at nine.
• 3:48
  SPEAKER_02: So when did you have your first stoma surgery?
• 3:51
  SPEAKER_02: Twenty-four.
• 3:52
  SPEAKER_02: Same age as me?
• 3:54
  SPEAKER_02: Well, when I was 24, obviously you're younger than me.
• 3:58
  SPEAKER_02: But I mean, how did you find that?
• 4:00
  SPEAKER_02: Because that was quite a difficult time.
• 4:02
  SPEAKER_02: And I mean, how have they managed?
• 4:03
  SPEAKER_02: Because obviously, with the diagnosis of having the Crohn's and the colitis in the large bowel, how did you find having the stoma surgery, what did they do?
• 4:15
  SPEAKER_00: So with the stoma, it wasn't I'd they actually asked me when I was 17 if I'd wanted one.
• 4:23
  SPEAKER_00: But I wanted to try other medications and stuff there.
• 4:27
  SPEAKER_00: How poorly were you when they asked you that?
• 4:29
  SPEAKER_00: Um quite bad.
• 4:31
  SPEAKER_00: Yeah, I was in one of the worst flares.
• 4:33
  SPEAKER_00: So I think I was in and out of hospital that particular year about three times.
• 4:39
  SPEAKER_00: But for long stays.
• 4:41
  SPEAKER_00: Yeah.
• 4:42
  SPEAKER_00: So when I was in and social media wasn't how it was, or how it is now.
• 4:47
  SPEAKER_00: So I just felt like I'm the only one here who's being asked, 17-year-old being asked, like you should be having a stoma bag now.
• 4:56
  SPEAKER_00: It was like, no.
• 4:57
  SPEAKER_00: Yeah, I I'm I'm not having it.
• 4:59
  SPEAKER_04: But if I could go back to the back of the state, how was it painted to you out of interest?
• 5:02
  SPEAKER_04: Like what you know, and we talk a lot about the brochures that have elderly people on and all that, like how not a lot of information.
• 5:09
  SPEAKER_00: Not a lot of information, yeah.
• 5:10
  SPEAKER_02: There wasn't when I had my stoma surgery.
• 5:13
  SPEAKER_02: I mean, the issues that I was having with bags and stuff at the time, and my stoma nurse was literally like, it's basically your life now until you have your reversal deal with it.
• 5:23
  SPEAKER_02: Yeah.
• 5:23
  SPEAKER_00: Basically what I got told.
• 5:26
  SPEAKER_00: When obviously when I had it when I was 24, completely different situation.
• 5:32
  SPEAKER_00: And the stoma nurse is coming round showing me like the base plates and stuff, and but I still think there should be more out there to be shown.
• 5:43
  SPEAKER_00: I feel like I would have appreciated more.
• 5:46
  SPEAKER_00: I don't know if they do that or not, if someone who had a stoma could come in and could have spoke to me.
• 5:53
  SPEAKER_02: Yeah, the problem that you've got with that, there are patient advocates.
• 5:56
  SPEAKER_00: Yeah.
• 5:57
  SPEAKER_02: Um I know it's pretty it's quite common, especially in Birmingham, for patient advocates to go in and speak to people that are either having surgery or just had the stoma surgery, but some NA trust trusts won't allow it because you've got DBS checks and everything else.
• 6:12
  SPEAKER_02: And in certain in certain aspects, I think when you've had stoma surgery, whether it be emergency or elective, it's quite a lot to wrap your head around.
• 6:24
  SPEAKER_02: So I sometimes think that a patient advocate going in to see someone and going, Oh, my life's absolutely fantastic, to somebody that's just had that surgery.
• 6:34
  SPEAKER_02: I don't know whether it would actually be beneficial.
• 6:37
  SPEAKER_02: It's a bit of a fine line because some people are really open and like, great, yeah, I really, really want the help.
• 6:42
  SPEAKER_02: I would love someone to come and see me.
• 6:44
  SPEAKER_02: Whereas others are gonna be like, Oh yeah, yeah, no.
• 6:47
  SPEAKER_04: It it and everyone's experience is different in it, not all of them plan.
• 6:51
  SPEAKER_00: You know, like even to have had the option.
• 6:53
  SPEAKER_04: Yeah.
• 6:54
  SPEAKER_04: I mean, even like where you so we all live in different parts of the country.
• 6:58
  SPEAKER_04: I know so in CAD, if there isn't like a stoma support group, there's nothing like local or anything like that.
• 7:06
  SPEAKER_04: Is there anything I know there's a few up north though?
• 7:08
  SPEAKER_02: North Wales ha have the stomach groups, but there's nothing down this way.
• 7:12
  SPEAKER_04: No, what about there's nothing it's just matter?
• 7:14
  SPEAKER_04: Why not?
• 7:15
  SPEAKER_04: You know, like it you know, and then it makes me think, oh, I really want to start one, and then I start thinking about the logistics of all, and I think I don't think I could do that on my own.
• 7:22
  SPEAKER_04: And it's just such a shame because think of the people that benefit from that.
• 7:26
  SPEAKER_00: Yeah.
• 7:27
  SPEAKER_02: I mean, there's there there are some stomach support groups down my way.
• 7:30
  SPEAKER_02: There's a really, really good one in Sheppey, but the problem is it's run by somebody that's also got a chronic illness, so they're not always able to do the support group.
• 7:38
  SPEAKER_04: Well that's what you can do on your own, could you?
• 7:39
  SPEAKER_04: Because say like you go down and people suddenly rely on that, you you can't be there.
• 7:44
  SPEAKER_02: Um I know there's another one that's run by stomach nurses.
• 7:48
  SPEAKER_02: Um, but other than that, I don't really go I've only ever been to a support group once and I was like, oh Yeah, and I suppose it depends the type of person you are as well, if you're not as open and confident with things.
• 7:58
  SPEAKER_04: You might not want to sit there in a room and talk about it, might you?
• 8:02
  SPEAKER_02: It's um all relative, isn't it?
• 8:04
  SPEAKER_01: Mm-hmm.
• 8:05
  SPEAKER_02: I mean, how did you find obviously like waking up with a stoma, what were your thoughts?
• 8:10
  SPEAKER_00: Because it you it wasn't easy because you had that and then Yeah, so well when I had it when SEB number one was here, I was told about it the day before.
• 8:22
  SPEAKER_00: So they'd come in and said, right, you've got sepsis, like you're all infected where the wound is, so we need to give you a soma bag because I had a recto vaginal fistula, so from that it had expanded and we were like they'd put a cetin or setin, I don't even know the right word, seeton.
• 8:42
  SPEAKER_02: I don't understand why they still do those, because they're brutal.
• 8:45
  SPEAKER_00: Oh, they had me in for the day to do it and sent me home the next day, was in agony, couldn't sit down, it was horrible.
• 8:51
  SPEAKER_00: So then from there, that was when I went into hospital and they'd said to me, it's got infected, we you've you've got sepsis, we need to do the stoma bag now.
• 9:01
  SPEAKER_00: I was petrified, petrified, and then um the next day they did it.
• 9:07
  SPEAKER_00: Yeah.
• 9:08
  SPEAKER_00: So how did you feel waking up after the second one?
• 9:10
  SPEAKER_00: After the second one?
• 9:11
  SPEAKER_00: Yeah.
• 9:12
  SPEAKER_00: I was straight in a coma, so yeah.
• 9:16
  SPEAKER_00: That was a journey and a half.
• 9:18
  SPEAKER_04: How long were you in the coma for?
• 9:19
  SPEAKER_00: Over a week, yeah.
• 9:22
  SPEAKER_00: What do your your family say about it now?
• 9:25
  SPEAKER_00: It's traumatic still for my mum.
• 9:28
  SPEAKER_00: Like really traumatic, but I feel like the more I talk about it, even with them, like it gets it off your chest.
• 9:36
  SPEAKER_02: But it gets it off your chest, but it's quite traumatic because they've been there and witnessed it.
• 9:40
  SPEAKER_00: Yeah, whereas I'm in my own little world, like la la la bit like not knowing what's going on, but Oh my god.
• 9:46
  SPEAKER_04: I because I met your mum, didn't I?
• 9:48
  SPEAKER_04: And yeah, I came to visit you about a month ago, and you have the most supportive, loving family in the world.
• 9:53
  SPEAKER_00: Yeah.
• 9:54
  SPEAKER_04: And it still must have been horrific.
• 9:57
  SPEAKER_00: So 'cause I had no idea that I'd been in a coma.
• 10:01
  SPEAKER_00: None of the family told me until I'd come out of hospital.
• 10:04
  SPEAKER_00: So Really?
• 10:05
  SPEAKER_00: Yeah.
• 10:06
  SPEAKER_00: And my sister sat me down and was like crying and was like, you nearly died.
• 10:10
  SPEAKER_04: Oh, that must have been such a hard conversation.
• 10:12
  SPEAKER_00: Yeah.
• 10:12
  SPEAKER_00: I I burst into tears.
• 10:14
  SPEAKER_00: I just thought I'd text my friends when I'd woke up, like, I'm sorry, I haven't like been in touch.
• 10:19
  SPEAKER_00: And they were all thinking, Oh my god, she's responded to me.
• 10:22
  SPEAKER_00: Oh but yeah.
• 10:24
  SPEAKER_00: But yeah, I'd no idea.
• 10:26
  SPEAKER_02: It is traumatic though, and I think sometimes when people talk about it, it kind of gives you those flashbacks that you don't necessarily want because you don't remember at the time, but once you start recovering and you get further down the line, you get you get flashbacks, and that's not always pleasant.
• 10:43
  SPEAKER_00: Were you offered psychological support?
• 10:45
  SPEAKER_00: Yeah.
• 10:45
  SPEAKER_00: Oh.
• 10:46
  SPEAKER_00: Yeah.
• 10:46
  SPEAKER_00: So once I'd they put me onto my ward after being in intensive care, there was someone who would come around like once a week and speak to me and stuff, and then it would like go to like two weeks and stuff.
• 10:59
  SPEAKER_00: But yeah, I did get a lot of support with that.
• 11:03
  SPEAKER_00: And I think what was it?
• 11:05
  SPEAKER_00: When I'd come out of hospital, they had a load of notes from you know being in intensive care and said, listen, if you want to see all that, we've got it here when you're ready.
• 11:14
  SPEAKER_00: So did you read them?
• 11:15
  SPEAKER_00: Yeah.
• 11:16
  SPEAKER_00: Oh that was hard.
• 11:18
  SPEAKER_00: That was hard.
• 11:19
  SPEAKER_00: But to know what had gone on and stuff while I was in there.
• 11:22
  SPEAKER_00: But there were some funny things I was told from like my mum and Mike had told me some stuff.
• 11:30
  SPEAKER_00: I'd apparently had rung up Mike and said, You can come and get me now, I'm fine.
• 11:35
  SPEAKER_00: But all like all OEP, you can come and get me.
• 11:38
  SPEAKER_00: He's like, You're not going anywhere.
• 11:40
  SPEAKER_04: Oh my god.
• 11:40
  SPEAKER_00: How long had you been with Mike when all this happened?
• 11:43
  SPEAKER_00: Oh six years.
• 11:44
  SPEAKER_04: So you've already been with him Oh no, sorry, five years.
• 11:46
  SPEAKER_00: I'm going like a but yeah.
• 11:48
  SPEAKER_04: So you'd been within five years when all this happened.
• 11:50
  SPEAKER_00: Yeah.
• 11:50
  SPEAKER_04: Oh.
• 11:52
  SPEAKER_00: Crazy.
• 11:53
  SPEAKER_00: So what what else has happened?
• 11:55
  SPEAKER_00: I'd um I'd rung my mum and dad and said, I'm pregnant anyway.
• 12:00
  SPEAKER_03: Like I'm just messing with my back out.
• 12:02
  SPEAKER_03: I was like, I can feel it in my belly.
• 12:05
  SPEAKER_00: It's like really expanded.
• 12:06
  SPEAKER_00: Like I'm like halfway.
• 12:08
  SPEAKER_00: And my mum's like, what?
• 12:10
  SPEAKER_00: What is going on?
• 12:11
  SPEAKER_00: But I rung our staff as well and said the same thing.
• 12:13
  SPEAKER_02: It's funny what you do on those though, because mine apparently I was accusing, apparently I thought I was on the cast of brazen that at me.
• 12:21
  SPEAKER_02: And then I was testing back that.
• 12:25
  SPEAKER_02: I was saying I was saying at the time that I thought the doctors and nurses were going off in the side rooms.
• 12:32
  SPEAKER_02: And that they weren't looking after me.
• 12:34
  SPEAKER_02: Because they was having adult shenanigans.
• 12:38
  SPEAKER_03: It's crazy, though.
• 12:39
  SPEAKER_03: It's crazy.
• 12:40
  SPEAKER_03: You know for definite that wasn't happening?
• 12:42
  SPEAKER_02: I don't know, but I thought why did that come in your head?
• 12:46
  SPEAKER_02: Yeah.
• 12:47
  SPEAKER_02: I was gonna say, how did you find the fistula?
• 12:49
  SPEAKER_02: How long had you had the fistula for?
• 12:51
  SPEAKER_02: Because having had a fistula myself, yeah.
• 12:54
  SPEAKER_02: And especially with Crohn's disease, they don't treat the fistula, do they?
• 12:58
  SPEAKER_02: And the stuff that they do to try and find out where it's going is not pleasant at all.
• 13:03
  SPEAKER_00: So I'd had two, two before, and I remember the first one being horrific.
• 13:08
  SPEAKER_00: It was awful.
• 13:10
  SPEAKER_00: And I had to get in a bath constantly, about three times a day, I'd have to get in the bath just to soothe it.
• 13:16
  SPEAKER_00: But it would get bigger, and they'd put me on um Humeira to get rid of that.
• 13:24
  SPEAKER_00: I don't know how that had helped eventually, but it would been there for so long.
• 13:28
  SPEAKER_00: And then the second time, it was almost like I thought the steroids were starting it off.
• 13:34
  SPEAKER_00: Because every time they put me on steroids, something would start to happen.
• 13:38
  SPEAKER_00: So then when they did it the second time, I was like, I can't, it it's happening again.
• 13:42
  SPEAKER_00: So they took me off the steroids, and then I was on steroids for two years prior to having the stoma, and I should have been off them.
• 13:50
  SPEAKER_00: They should have took me off, they kept putting me back on them.
• 13:52
  SPEAKER_02: And then when I'd come off, I had this fistula, and I'm thinking the problem that you've got with with Crohn's disease, because of the nature of Crohn's disease, the bowel breaks down.
• 14:04
  SPEAKER_02: So what happens is the bowel breaks down, you develop an abscess on the inside of the bowel, and then that tunnels off as a fistula to some well, the unpleasant various places.
• 14:16
  SPEAKER_02: Um, and then it bursts, the abscess bursts drains out through the fistula, and then basically you've you've got an extra tunnel off of your bowel that fecal matter comes out of, which isn't pleasant, especially when it's down there.
• 14:30
  SPEAKER_00: It's just so painful.
• 14:31
  SPEAKER_00: Uh-oh.
• 14:32
  SPEAKER_00: Just I I'd have to either be on like four pillows to sit down, but I remember going into the hospital for the one I'd had two years ago, and I just couldn't sit down and I'd be crying, like hysterically crying to my mum, and she'd be like, I like don't know what I'm supposed to do.
• 14:52
  SPEAKER_00: We need to take you in, this is so bad.
• 14:54
  SPEAKER_00: And then they obviously they'd put the seat on in and then it got worse.
• 15:02
  SPEAKER_00: It didn't get better.
• 15:04
  SPEAKER_04: What was it?
• 15:08
  SPEAKER_04: Uh like when things started not feeling so horrific.
• 15:12
  SPEAKER_00: Um I'd say wanted to come out of the coma.
• 15:17
  SPEAKER_00: Yeah.
• 15:18
  SPEAKER_00: Because it it was just I'd say the months leading up to that were just traumatic.
• 15:24
  SPEAKER_00: Because it would be something else would go wrong.
• 15:26
  SPEAKER_00: Oh, that I'm feeling fat, oh, something else would go wrong, and it'd be like a matter of days, so I'd go into the hospital, I'd come out, something else had happen, and then I'd come back out, and then it'd be even worse, and then the bowel would perforate, and then I'm in the coma, and then from then on, but I did feel like after the coma and I'd gone on to the ward, I'd lost so much weight, I was I was like four stone.
• 15:53
  SPEAKER_00: Yeah, you posted a before and after, didn't you, the other day?
• 15:56
  SPEAKER_00: Yes.
• 15:56
  SPEAKER_00: So that was when I'd come out of hospital.
• 15:58
  SPEAKER_00: It's unbelievable the difference.
• 16:00
  SPEAKER_00: So we've done it.
• 16:01
  SPEAKER_00: Even looking at that one, that's crazy because I'm so skinny there.
• 16:04
  SPEAKER_00: But my mum and Mike had seen me while I was in hospital and said, You were literally like a skeleton.
• 16:12
  SPEAKER_00: It was I don't think I've ever been that skinny ever.
• 16:15
  SPEAKER_00: In all the flare-ups and being malnourished before, I've never got that slim.
• 16:22
  SPEAKER_02: And how how did you deal with the malnutrition?
• 16:27
  SPEAKER_02: Because was it more mal malnutrition than malabsorption?
• 16:30
  SPEAKER_00: Yeah.
• 16:32
  SPEAKER_00: So I felt like I just had no appetite and anything I'd try to eat.
• 16:40
  SPEAKER_02: I'd cause pain.
• 16:41
  SPEAKER_00: Yeah.
• 16:42
  SPEAKER_00: But everything I was eating as well would just go right through.
• 16:45
  unknown: Yeah.
• 16:45
  SPEAKER_00: So it But did you have TPN?
• 16:47
  SPEAKER_00: Yeah.
• 16:48
  SPEAKER_00: So when I was after the coma and once I was on the ward, I felt like then I'd hit rock rock bottom because they wanted to give me the NG tube again.
• 16:57
  SPEAKER_00: And I was just I didn't want it.
• 16:59
  SPEAKER_00: I didn't want I've had it so many times, but at this point I just did not want it.
• 17:03
  SPEAKER_04: But it would have gone right through you anyway.
• 17:05
  SPEAKER_04: And that's so TPN for those that don't know is total parental nutrition.
• 17:09
  SPEAKER_04: So broken down macros and micros are put directly into the vein, and that's how it's on the heart.
• 17:16
  SPEAKER_04: Yeah.
• 17:16
  SPEAKER_04: Because I know Jake had one for 12 weeks, and that's the only thing that got him out of severe malnutrition.
• 17:22
  SPEAKER_04: You like me still got the scars from your Hickman line, aren't you?
• 17:25
  SPEAKER_04: Oh yeah, and Jake's got the same.
• 17:27
  SPEAKER_04: Aren't they beautiful scars though?
• 17:28
  SPEAKER_04: His looks like a little butterfly with a butterfly tattoo.
• 17:33
  SPEAKER_02: Um yeah, and I agree with you with the NG tubes because I always end up with post-opilius and they're like, you need an NG tube.
• 17:41
  SPEAKER_02: I'm like, no, you will have to fight me and date me to get one done.
• 17:44
  SPEAKER_00: I do think worse than the NG though, I hate the the ones with the bile bag attached because they're more thicker as well.
• 17:51
  SPEAKER_00: So when they're getting them in, that's I just find that worse.
• 17:55
  SPEAKER_00: But I did have the NG tube and had TPN at the same time and that's you had them at the same time?
• 18:01
  SPEAKER_00: Yeah.
• 18:02
  SPEAKER_00: Yeah.
• 18:03
  SPEAKER_04: So how long from starting to have TPN did you just take to come off it then?
• 18:08
  SPEAKER_00: Um I think so I was in hospital for two and a half months.
• 18:12
  SPEAKER_04: Yeah.
• 18:13
  SPEAKER_00: So I think I was on I was on TPN probably over a month and a half.
• 18:18
  SPEAKER_04: And did they have to like build you up and then wean you off?
• 18:22
  SPEAKER_00: Yeah.
• 18:22
  SPEAKER_00: Yeah.
• 18:23
  SPEAKER_00: But then it was like try and have a little something to eat, and then once I remember them bringing in a crumpet, and I was like, okay, let me try it.
• 18:30
  SPEAKER_00: And I only had like half of it, but I was so made up it was like a proper big milestone.
• 18:35
  SPEAKER_00: She said, Oh, the crumpet.
• 18:36
  SPEAKER_02: I think the problem that you've got though, when when you're eating, especially whilst you're still on TPN, you can taste it.
• 18:42
  SPEAKER_00: Yeah, it's horrible.
• 18:43
  SPEAKER_00: My mum would bring in like KFC and stuff for me to try and you know, just try and build me, but the taste it'd be horrific.
• 18:50
  SPEAKER_00: But I think all the other medications as well would make that ten times worse.
• 18:54
  SPEAKER_04: One of the side effects of TPN is an aversion to eating as a result.
• 18:58
  SPEAKER_04: So like Jake was on it for twelve weeks, and as a result, he actually developed an eating disorder because he literally could not face eating.
• 19:07
  SPEAKER_04: He couldn't like look at it.
• 19:08
  SPEAKER_04: It was all sensory reactions to it.
• 19:10
  SPEAKER_04: You couldn't look at it, he couldn't touch it, you couldn't smell it, it was just but he was, you know, very different circumstances.
• 19:16
  SPEAKER_04: He was like two at the time.
• 19:18
  SPEAKER_02: It is sensory though, because the problem that you've got with TPN and the medication, because of where it's going through, so it's a bit like you know, when they stick a cannula in your arm and they stick up the water sodium and you can taste it in your mouth.
• 19:33
  SPEAKER_02: Yeah, yeah.
• 19:33
  SPEAKER_02: Or like when they put they give you IV paracetamol, you can taste the paracetamol, it's quite sweet.
• 19:38
  SPEAKER_02: That's the same with TPN, but obviously, because it's going through you all the time, that's all you can taste, and then obviously with TPN you've got the issue with all oral frush, so thrush in the mouth because you're not doing what you would normally do.
• 19:50
  SPEAKER_04: Yeah, yeah, yeah.
• 19:51
  SPEAKER_02: It's never, never, never fun.
• 19:53
  SPEAKER_02: I mean did they take out your fistulas when they did the stoma surgery?
• 19:59
  SPEAKER_00: Um no.
• 20:01
  SPEAKER_00: They so the seating, they they cleaned that and kept that in.
• 20:05
  SPEAKER_02: Yeah.
• 20:06
  SPEAKER_00: And then just said keep just keep hold of that.
• 20:10
  SPEAKER_00: Because I did have to go back in last year to they were gonna either take it out or just clean it, and they ended up cleaning it, so I've still actually got that one now.
• 20:18
  SPEAKER_00: Oh wow.
• 20:19
  SPEAKER_00: Which I'm quite surprised about, but they said there's no point in us touching it.
• 20:24
  SPEAKER_00: We don't want to remove it in case anything does happen to us.
• 20:28
  SPEAKER_00: But I don't I don't feel it.
• 20:29
  SPEAKER_00: It's fine.
• 20:30
  SPEAKER_00: So you don't even know you've got it?
• 20:31
  SPEAKER_02: How long was she living with the fishler for though?
• 20:34
  SPEAKER_02: Because I I had a fishler in 2003 and it didn't get taken out until 2009, which was when my bowel perforated because they didn't know which part of the bow it went to.
• 20:44
  SPEAKER_00: So I don't know if it had still I don't know if that's possible.
• 20:49
  SPEAKER_00: Could it have stayed from the first one that I'd had when I was 17?
• 20:53
  SPEAKER_00: I still I had that first fishula, and then they'd give me the medication to get it gone, and then something had come back, and then it's gone again.
• 21:02
  SPEAKER_00: But then for that one to come back, it started, I'd say, the start of January.
• 21:07
  SPEAKER_02: Yeah.
• 21:08
  SPEAKER_00: And then they did the seat in the end of January, so I'd had it for then, but I was still in pain after that.
• 21:16
  SPEAKER_00: Didn't have my first stoma surgery till the middle of March, so yeah.
• 21:22
  SPEAKER_00: A few months.
• 21:23
  SPEAKER_04: And so much can change in the body overnight, can't it?
• 21:26
  SPEAKER_04: Like you just can't unless you're having regular scans of regular whatever, you just don't know.
• 21:30
  SPEAKER_02: The problem that you've got with Crohn's disease, any surgery, even though you're having surgery to make yourself better, you still run the risk of whilst you're healing of um post op infections, yeah.
• 21:42
  SPEAKER_02: Another abscess developing, or because of the stress on the body, developing more fistulas within the area that you've had the surgery carried out.
• 21:50
  SPEAKER_00: Yeah, that was what I was scared of.
• 21:53
  SPEAKER_02: And um it can't I mean fistulas aren't spoken about enough.
• 21:56
  SPEAKER_02: When you get a fistula like nobody else has got one, and then you Finally, see someone that's had minds, oh yeah, you're like my friend.
• 22:03
  SPEAKER_02: Like how how have they dealt with the fish duty, how they're dealing with it?
• 22:06
  SPEAKER_02: Because the problem is, fishers are incredibly painful, regardless of where you get them.
• 22:10
  SPEAKER_02: Because of where it's attached and because it's like scar tissue, you can always feel it when stuff's coming out or it's going through.
• 22:16
  SPEAKER_02: It it's it's like another added version of pain.
• 22:19
  SPEAKER_02: Yeah.
• 22:21
  SPEAKER_02: Um I mean, how did you find like coming out of hospital and recovering and kind of getting back to normal?
• 22:28
  SPEAKER_02: I Well, new normal, what into normal.
• 22:30
  SPEAKER_00: I feel like it sounds so strange to say, but when I did come out of hospital after being in for so long, it was quite scary because that had become like almost my safe space.
• 22:42
  SPEAKER_00: Yeah.
• 22:42
  SPEAKER_00: Being in there and being looked after, like, some sort of institution what's the word?
• 22:47
  SPEAKER_04: Institutionalised.
• 22:48
  SPEAKER_00: Yeah.
• 22:48
  SPEAKER_00: Yeah.
• 22:49
  SPEAKER_04: Especially if you're used to all that intervention and all that time you're right.
• 22:55
  SPEAKER_02: When they let you out on weekend release and you have to be back in by satellites yourself.
• 22:59
  SPEAKER_02: What do you do?
• 23:00
  SPEAKER_02: Yeah, but they trace you.
• 23:01
  SPEAKER_02: If you're not back in by when you've got Yeah, you've got to get back by the time.
• 23:05
  SPEAKER_04: I remember to having to do it with Jake.
• 23:07
  SPEAKER_04: We used to when he was on the TPN, they'd let us out for like an hour, then it'd be two hours, then it'd be whatever.
• 23:12
  SPEAKER_04: And you'd be a I'd be afraid to leave the park by the hospital in case they would like ring and go, Where is he?
• 23:19
  SPEAKER_00: They didn't let me do that this this time being in.
• 23:22
  SPEAKER_00: But um I think it was two years before they did, but they used to let me do it like all the time.
• 23:27
  SPEAKER_00: So Mike could come and get me and take me out on like a little date after the hospital and then bring me back on nothing.
• 23:34
  SPEAKER_00: So that was cute.
• 23:35
  SPEAKER_00: We'd go to the cinema and then have to be straight back.
• 23:39
  SPEAKER_02: That's the problem though, isn't it, with with with Crohn's, because you're never quite sure when it's gonna kick off and due to the nature of it.
• 23:45
  SPEAKER_02: I mean, I know for me, any hospital admission with a Crohn's flare was always in for for two weeks minimum.
• 23:51
  SPEAKER_04: Yeah.
• 23:51
  SPEAKER_04: Well, how long were you in recently for?
• 23:54
  SPEAKER_04: A week?
• 23:56
  SPEAKER_02: Nearly.
• 23:57
  SPEAKER_02: Yeah.
• 23:58
  SPEAKER_02: Six days I was in.
• 24:00
  SPEAKER_02: That's enough, isn't it?
• 24:03
  SPEAKER_02: Yeah, but they finally admitted that the ulcers on my stoma are a Crohn's flare.
• 24:08
  SPEAKER_02: They're not granulomers, they are a Crohn's flair.
• 24:10
  SPEAKER_02: Yeah.
• 24:10
  SPEAKER_02: And they're just like, oh, shall we give you a topical ointment?
• 24:13
  SPEAKER_03: Why was that gonna do with Crohn's ulcers?
• 24:16
  SPEAKER_03: Yeah, sure.
• 24:17
  SPEAKER_03: Yeah, they're gonna get calamylation, bit down, sort it right up.
• 24:23
  SPEAKER_03: Sort it right out.
• 24:24
  SPEAKER_03: Bit bleach.
• 24:25
  SPEAKER_03: Oh god Christ.
• 24:27
  SPEAKER_04: So the well, the main reason why we've actually got you here today is because we are in the height of the summer and you have done a fair bit of travelling, and your most epic holiday, it's fair to say, is when you got engaged to the lovely Mike.
• 24:43
  SPEAKER_04: So a lot of people that's one of the things that they get anxious about is travelling with a stoma.
• 24:49
  SPEAKER_04: So have you what's your experience with travelling with a stoma?
• 24:53
  SPEAKER_00: So for me, before we'd went, I was I had really bad anxiety about the whole situation.
• 25:00
  SPEAKER_00: But I would definitely make sure you ring or like your travel agent or who you like who you're flying with.
• 25:08
  SPEAKER_00: I made sure to get um an outside seat, you know, so I could get up and go to the toilet because that being trapped in the middle when you need to get out of here.
• 25:18
  SPEAKER_00: You want an ILC also?
• 25:20
  SPEAKER_00: I was like, give me the ILC, I'll do that.
• 25:23
  SPEAKER_00: And I made sure as well to ring up and say, like, I've got a stoma bag, uh there's like medical supplies I need to bring with me.
• 25:30
  SPEAKER_00: So they they do tend to give you an extra bag to take so you can have what did I what was it?
• 25:37
  SPEAKER_00: I think it was 10 kg I got.
• 25:39
  SPEAKER_00: Oh wow so that made things a lot easier, and all you have to do is just show that going through.
• 25:44
  SPEAKER_00: But yeah.
• 25:45
  SPEAKER_00: Have you ever been stopped and uh patted down?
• 25:48
  SPEAKER_00: No, I was prepared for it.
• 25:50
  SPEAKER_00: I was all prepared and we were a bit disappointed.
• 25:52
  SPEAKER_00: We were like really ready to like currently.
• 25:54
  SPEAKER_00: Come on, I'm ready.
• 25:56
  SPEAKER_00: It was the quickest time getting through there.
• 25:57
  SPEAKER_00: It's the quickest I have ever got through security.
• 25:59
  SPEAKER_03: Wait, did you where was that?
• 26:00
  SPEAKER_03: What airport?
• 26:01
  SPEAKER_03: Gatwick.
• 26:01
  SPEAKER_03: Gatwick.
• 26:02
  SPEAKER_03: I've never been there.
• 26:02
  SPEAKER_03: Last time I went for Gatwick, I got Gatwick, I got swabbed.
• 26:06
  SPEAKER_03: Wait, my bag got swapped.
• 26:10
  SPEAKER_00: See, I was ready for all this.
• 26:11
  SPEAKER_00: I was like, come on.
• 26:12
  SPEAKER_00: And they didn't want to do anything.
• 26:14
  SPEAKER_00: I was like, oh they were really respectful, don't get me wrong.
• 26:17
  SPEAKER_02: They were really respectful, they were really nice about it.
• 26:20
  SPEAKER_02: Yeah.
• 26:20
  SPEAKER_02: And I'm just like, why me?
• 26:23
  SPEAKER_02: Of all the people to get a swap.
• 26:25
  SPEAKER_02: And to be honest, I'm not surprised.
• 26:26
  SPEAKER_04: I'm not surprised at all.
• 26:28
  SPEAKER_04: I got so I went to Belfast with um um with Pelican actually last week.
• 26:34
  SPEAKER_04: And um, yeah, you kind of like you kind of psych yourself up, don't you?
• 26:38
  SPEAKER_04: Like you're in the queue, you're getting ready to like get your stuff out, and you're like, come on, game time, come on, come on, come on.
• 26:44
  SPEAKER_04: And then yeah, I was kind of it's like you get yourself all built up and then you're like, oh.
• 26:47
  SPEAKER_02: Yeah, but have you not noticed the I the the the Irish, especially with like airports and their security and bag checks, they are stomer aware.
• 26:56
  SPEAKER_04: Yeah, yeah.
• 26:57
  SPEAKER_04: Well, I saw what I got stranded in Belfast Airport a couple of months ago.
• 27:03
  SPEAKER_04: That yeah, it's ripping.
• 27:05
  SPEAKER_04: It's just yeah.
• 27:06
  SPEAKER_04: We don't talk about it.
• 27:07
  SPEAKER_04: We don't talk about that.
• 27:08
  SPEAKER_04: Um and yeah, I got I got frisked three times.
• 27:12
  SPEAKER_04: You'd have loved it.
• 27:14
  SPEAKER_04: You'd have been well at first.
• 27:16
  SPEAKER_04: Um but yeah, so the one time they just patted me down, they were like, What's that?
• 27:21
  SPEAKER_04: And I thought stoma bag, and they were like, Okay, that's fine, crack on.
• 27:24
  SPEAKER_04: Because we kept on having to board the plane for it not to be able to take off, and this happened three times across 36 hours, so that's why it was so many times.
• 27:31
  SPEAKER_04: Um, and then the second time I think they asked, they did the whole like portable scanning thing all over me, and they were like, What is it?
• 27:38
  SPEAKER_04: Told them, and they said, Can you just show us?
• 27:40
  SPEAKER_04: So I just whipped it out.
• 27:41
  SPEAKER_04: And then I think the third time they asked me to go to a separate room, and then um that's when you think, Oh, this is like these documentaries my mother would watch, you know, like the drug squad or whatever you know, like Australia when they check your bags for all the dodgy stuff people bring back from abroad, and that it was like, yeah, I was like, Oh, my mum would be well excited.
• 28:00
  SPEAKER_02: See inside one of these rooms.
• 28:02
  SPEAKER_02: I think the thing is, and and and this is the thing, and this is what's been said to me before on occasion, people are quite willing to do anything to get three things through to security out of the country.
• 28:15
  SPEAKER_02: So you can uh kind of understand why they're swabbing you, but I think you just tend to take it a bit more personally if it's always what happens to you.
• 28:22
  SPEAKER_04: Oh I've never heard of anyone getting swabbed.
• 28:24
  SPEAKER_04: I mean, I get why, but I mean, yeah, I mean, I yeah.
• 28:28
  SPEAKER_04: So so do you you don't do you wear a two-piece or a one-piece?
• 28:32
  SPEAKER_04: One piece.
• 28:32
  SPEAKER_04: Oh, so you so did you take your bag off then?
• 28:35
  SPEAKER_04: Had to do a bag change, large jazz.
• 28:37
  SPEAKER_04: Or did you get the swab it?
• 28:38
  SPEAKER_02: No, they they just literally swabbed the outlet of my bag.
• 28:43
  SPEAKER_02: Oh, I swapped the outlet of my bag and run it through the machine and it come back clear for fecal matter.
• 28:52
  SPEAKER_02: It's no It's definitely not got anything in there, isn't it?
• 28:57
  SPEAKER_04: How does this take?
• 28:58
  SPEAKER_02: Minutes.
• 28:59
  SPEAKER_02: Oh, there you go.
• 29:00
  SPEAKER_02: Literally minutes.
• 29:01
  SPEAKER_02: I wonder how often they do that.
• 29:02
  SPEAKER_02: Do you know what it is?
• 29:03
  SPEAKER_02: I think because of me, because um my output is so high and because I can't always control it, I'd empty my bag, but I'd had a coffee, and it flushed straight through me because I haven't eaten.
• 29:14
  SPEAKER_02: So of course by the time I've gone through the body scan and my bag's going, yeah.
• 29:20
  SPEAKER_04: So, what do you guys do before a flight or anything then in terms of your oral intake?
• 29:24
  SPEAKER_04: Do you think about it?
• 29:25
  SPEAKER_04: You're conscious of it, what do you do?
• 29:27
  SPEAKER_00: A little bit.
• 29:27
  SPEAKER_00: I made sure definitely before I got to the airport to have um low pyramide, like a modium.
• 29:34
  SPEAKER_04: Do you have that anyway, or is that just as a precaution?
• 29:37
  SPEAKER_00: I'll take I'll have it on me, because mine does tend to be watery if it you know if I'm getting anxious and stuff as well.
• 29:44
  SPEAKER_00: Yeah, yeah, of course.
• 29:46
  SPEAKER_04: That stress factor again.
• 29:48
  SPEAKER_02: I I think the other thing as well, I mean, I know when I was fully intact and I used to travel abroad, my my stomach used to be absolutely awful the entire time on holiday.
• 29:56
  SPEAKER_02: Yeah.
• 29:56
  SPEAKER_02: I find it's a lot easier now since having my stoma.
• 30:01
  SPEAKER_02: But I think there's always that worry, isn't there?
• 30:03
  SPEAKER_02: There's always that that thing that, oh, your bag could explode.
• 30:07
  SPEAKER_02: Whilst you're on the planet, it's never blown up.
• 30:11
  SPEAKER_00: No, mine hasn't happened.
• 30:13
  SPEAKER_00: Someone said that to me and they'd be like, don't drink any fizzy drinks before you go.
• 30:16
  SPEAKER_00: And I was like, Well, well, why?
• 30:18
  SPEAKER_00: Um I want one.
• 30:19
  SPEAKER_00: I want a I want a prosecco with the early.
• 30:22
  SPEAKER_04: Like if I got engaged on holiday, I'd want shampoos on the way back.
• 30:26
  SPEAKER_04: Yeah.
• 30:26
  SPEAKER_04: And I wouldn't care from a bag blewer.
• 30:28
  SPEAKER_04: I'd just go and let the air out in the toilet.
• 30:30
  SPEAKER_02: That was fine.
• 30:30
  unknown: Yeah.
• 30:31
  SPEAKER_02: It was all good.
• 30:32
  SPEAKER_02: Not going to deprive yourself because of a bit of area.
• 30:34
  SPEAKER_02: I mean, have you ever changed your bag on the plane?
• 30:36
  SPEAKER_02: Yes, I changed my bag on the plane.
• 30:37
  SPEAKER_02: What was it?
• 30:39
  SPEAKER_04: How the hell did you there's not enough room for that?
• 30:41
  SPEAKER_04: Okay, talk us through it.
• 30:43
  SPEAKER_04: How did you do it?
• 30:44
  SPEAKER_00: Amazing.
• 30:44
  SPEAKER_00: So I did it on the way there because I thought, I don't actually need to change it, but did you not think to you not think to do it in the airport?
• 30:52
  SPEAKER_00: Well, no, I just wanted to experience it.
• 30:56
  SPEAKER_03: Let's go to the toilet and do it.
• 30:57
  SPEAKER_03: Why not?
• 30:58
  SPEAKER_00: It's all rock and roll.
• 30:59
  SPEAKER_00: Yeah.
• 31:00
  SPEAKER_00: And I thought I I had ahead, oh, people are going to be waiting outside, but then there's people who are just going number two in general, anyway.
• 31:08
  SPEAKER_04: People spent.
• 31:09
  SPEAKER_04: I'm I'm telling you, but the when we're emptying bags or changing a bag, I swear people who are having number twos spend still way more time than us in there.
• 31:16
  SPEAKER_04: Yeah.
• 31:18
  SPEAKER_04: Yeah.
• 31:18
  SPEAKER_04: We're not the toilet huggers.
• 31:20
  SPEAKER_04: Uh huggers?
• 31:20
  SPEAKER_04: Huggers.
• 31:22
  SPEAKER_04: I don't know.
• 31:23
  SPEAKER_02: There's always something that freaks me out about airplane toilets.
• 31:26
  SPEAKER_02: It's the flush.
• 31:27
  SPEAKER_02: Yeah.
• 31:27
  SPEAKER_02: I don't know.
• 31:28
  SPEAKER_02: Whenever you push the flush, I can just feel my stomach going.
• 31:31
  SPEAKER_04: It's an hour.
• 31:33
  SPEAKER_04: There's never an right.
• 31:34
  SPEAKER_04: There's never enough water that gets down there.
• 31:36
  SPEAKER_04: I'm not being funny.
• 31:38
  SPEAKER_04: It can't just be me.
• 31:39
  SPEAKER_04: My waist never goes all in one flush.
• 31:41
  SPEAKER_04: Oh, it doesn't crap.
• 31:43
  SPEAKER_04: No.
• 31:43
  SPEAKER_04: So then I stand there, do the whole, wait a few seconds, look at myself in the mirror, check how much crap I look like someone playing.
• 31:49
  SPEAKER_04: Yeah.
• 31:50
  SPEAKER_04: And then you're like, flush again, still none.
• 31:52
  SPEAKER_04: And then I'm like, right, do I get some tissue?
• 31:55
  SPEAKER_04: That's what I have to do.
• 31:57
  SPEAKER_04: Anyone who says they haven't done that is a liar.
• 32:00
  SPEAKER_02: Portolo's portalo's you have to put the tissue down there before you empty your bag, or else there's elder bags.
• 32:08
  SPEAKER_04: Oh, oh no.
• 32:09
  SPEAKER_04: Oh, well, I'm going to Oktoberfest in um September.
• 32:13
  SPEAKER_02: So I take extra tissue with me.
• 32:15
  SPEAKER_02: Is that I literally have a roll of toilet roll with my stomach bag if I'm going to find out.
• 32:20
  SPEAKER_02: I don't know what it's going to be like.
• 32:21
  SPEAKER_04: I'm a bit I'm I'm kind of just pretending like it's going to be fine.
• 32:24
  SPEAKER_04: Yeah.
• 32:24
  SPEAKER_04: But you know, there's going to be a lot of poo created in that situation.
• 32:30
  SPEAKER_04: So for a couple of days.
• 32:31
  SPEAKER_04: So yeah, I mean those yeah, it's not going to be pleasant, is it?
• 32:35
  SPEAKER_04: But like like I just said, you can't not live your life and do what you need to do just because of a bag.
• 32:39
  SPEAKER_04: You just gotta get on with it and adapt.
• 32:41
  SPEAKER_04: Yeah.
• 32:41
  SPEAKER_02: I think that's the thing though.
• 32:42
  SPEAKER_02: There's the the misconception about stammer bags is the fact that you license well, I don't understand the the taboo that's behind it, but there's just so much taboo still.
• 32:54
  SPEAKER_02: Yeah.
• 32:54
  SPEAKER_02: You shouldn't have your bag out, you shouldn't be doing this, you can't wear this, you can't do that.
• 32:58
  SPEAKER_02: You know, you can do anything that normal but Do what you want to do.
• 33:01
  SPEAKER_02: People that have normal plumbing do.
• 33:02
  SPEAKER_03: Do what you want to do.
• 33:03
  SPEAKER_03: Yeah.
• 33:04
  SPEAKER_02: I mean, sometimes I might use my stoma as an excuse not to do things.
• 33:09
  SPEAKER_02: Right, you're all getting there, yeah.
• 33:11
  SPEAKER_04: Yeah, anyone who says stomach done that is also a liar.
• 33:14
  SPEAKER_04: Yeah.
• 33:15
  SPEAKER_04: That could be a new segment for the podcast.
• 33:17
  SPEAKER_04: What have you got out of and use your stoma as an excuse?
• 33:22
  SPEAKER_04: Right, if anyone who's listening now.
• 33:25
  SPEAKER_04: Anyone who's listening, um, yeah.
• 33:28
  SPEAKER_04: Top ten excuses.
• 33:29
  SPEAKER_04: Let's know how to get out of things.
• 33:30
  SPEAKER_04: I'd love to know what people have used.
• 33:33
  SPEAKER_03: I love to know.
• 33:35
  SPEAKER_04: I'm trying to think what have I got out of.
• 33:37
  SPEAKER_04: I know I'm trying to.
• 33:38
  SPEAKER_04: Can you think of something?
• 33:39
  SPEAKER_04: I don't know, I'm not sure if I've actually used it.
• 33:41
  SPEAKER_04: Oh.
• 33:45
  SPEAKER_03: Got into my mum's.
• 33:48
  SPEAKER_04: Do you think people use it as an excuse?
• 33:50
  SPEAKER_04: It's not gonna work.
• 33:53
  SPEAKER_02: No, I've never used it as an excuse.
• 33:54
  SPEAKER_02: To be honest, I've gone in before Ben before, had a leak.
• 33:58
  SPEAKER_02: Yeah.
• 33:58
  SPEAKER_02: I've sat there and I'm like, what's that?
• 34:00
  SPEAKER_02: Oh god.
• 34:01
  SPEAKER_02: Yeah.
• 34:01
  SPEAKER_02: And I've had to ring them up.
• 34:02
  SPEAKER_02: It's it's like, have you not got anything in the drawer at work?
• 34:05
  SPEAKER_02: Yes, I have, but I don't have like I've I've either got a manual and not a bag or a bag.
• 34:10
  SPEAKER_02: There's nothing.
• 34:12
  SPEAKER_02: Yeah, yeah, yeah, yeah.
• 34:13
  SPEAKER_02: And I also need some dry wipes.
• 34:14
  SPEAKER_02: How many do you need?
• 34:15
  SPEAKER_02: Just bring in the whole pack because it's gonna be messy.
• 34:18
  SPEAKER_04: I so I worked in an office in a primary school um a few months back, and I remember just sitting at the office it's like 10 o'clock or whatever, and I just, you know, and you just feel that hot, like you've peed yourself running down your groin vibe, which no one enjoys.
• 34:32
  SPEAKER_04: And uh I just remember thinking, just holding myself, like I don't know why I thought I'd catch it, because I'm not gonna catch it, am I?
• 34:38
  SPEAKER_04: Like you just so you're just gathering your gathering your clothes as if it's like a mop-up situation.
• 34:42
  SPEAKER_04: Then I'm like, I need to get to the toilet from this chair, how am I gonna do it?
• 34:46
  SPEAKER_04: And then you're like, Well, I gotta go home.
• 34:47
  SPEAKER_04: I can't get out of this situation.
• 34:49
  SPEAKER_04: So there are situations where you genuinely have to go home, but Do you feel like when you've had a leak as well?
• 34:54
  SPEAKER_00: If if you are sat down and you get up, do you feel like you like do like a weird waddle to get to running around and do it?
• 35:02
  SPEAKER_02: I think it's really loud.
• 35:05
  SPEAKER_02: Because it's it's liquid output, but it's not a solid.
• 35:08
  SPEAKER_02: So gravity takes itself.
• 35:14
  SPEAKER_03: You're walking in the hands would come up.
• 35:20
  SPEAKER_03: They'd be there holding it on.
• 35:22
  SPEAKER_02: You know that differ you see of the really weird old lady with a hood running across the river with the bag.
• 35:28
  SPEAKER_02: That is literally the walk.
• 35:29
  SPEAKER_02: That's literally the walk that you do with your bag.
• 35:32
  SPEAKER_04: That is, yeah.
• 35:33
  SPEAKER_04: And I and I I'm almost trying to like thrust my groin up in the air to try and like stop it.
• 35:41
  SPEAKER_04: Don't go any further.
• 35:42
  SPEAKER_04: Don't don't don't go down.
• 35:43
  SPEAKER_04: And it just no, you it nothing works, it's still gonna go down.
• 35:47
  SPEAKER_02: Oh I I literally had the day two out of hospital, I literally had the world's worst leak that I'd ever had, that I've had for ages.
• 35:56
  SPEAKER_02: Now my new bedroom carpet is a nice light grey.
• 36:01
  SPEAKER_04: Well, that you poor choice you have.
• 36:03
  SPEAKER_02: And I'd ballooned because of the meds, I ballooned, and obviously the balloon had come off, so the wind had pushed it off, and then obviously my output's like pure liquid, so it's it was everywhere.
• 36:17
  SPEAKER_02: I mean, I had to wash the duvets, the sheets, had to scrub my mattress with Dr.
• 36:21
  SPEAKER_02: Becker.
• 36:22
  SPEAKER_04: Yes, yes, I have some of that upstairs and downstairs in those situations.
• 36:27
  SPEAKER_02: And I then had to clean the bedroom carpet because where my bed's so high up, because I need the bed high up to be able to get off, I cut off, and there's just like a little trail.
• 36:40
  SPEAKER_04: We've all created the trails.
• 36:42
  SPEAKER_04: It's like when you get it's like when you get your periods and you don't expect it, it's that dreaded trail.
• 36:46
  SPEAKER_04: Let's not pretend that doesn't matter.
• 36:47
  SPEAKER_02: Then you've got the Dr.
• 36:48
  SPEAKER_02: Becker at four o'clock in the morning on the bedroom carpet falling the trail back up to the bed.
• 36:54
  SPEAKER_00: Do you have a m mattress protector on the other hand?
• 36:56
  SPEAKER_04: I know now I have clays.
• 36:57
  SPEAKER_04: But it's not enough though.
• 36:58
  SPEAKER_02: Like it's unless it's like a wet sheet one.
• 37:01
  SPEAKER_02: Yeah, it protects the mattress, but it doesn't protect the stuff that goes over you on you around you.
• 37:07
  SPEAKER_02: Yeah.
• 37:07
  SPEAKER_04: So like so the carpet in my bedroom is like I've had it professionally clean like two or three times, and this just it cannot be clean because from Jake being a newborn and losing four litres of stool.
• 37:19
  SPEAKER_04: I love him when that leaked.
• 37:21
  SPEAKER_04: You just can't get that out of a carpet.
• 37:23
  SPEAKER_04: You can't, and then you're like, do I get laminate because then it's wipable?
• 37:27
  SPEAKER_04: But then even with laminate, like it kind of spreads.
• 37:30
  SPEAKER_04: Oh, that would surely it would just settle.
• 37:32
  SPEAKER_04: Yeah, like that to me is more ick than the carpet.
• 37:35
  SPEAKER_04: Because at least I can proper try and clean the carpet, but I can't imagine taking that liner up.
• 37:40
  unknown: No.
• 37:42
  SPEAKER_02: But you can just do some of the things that we live with, but this is the thing.
• 37:46
  SPEAKER_02: This is this is the reality.
• 37:48
  SPEAKER_02: It's not nothing is perfect.
• 37:51
  SPEAKER_02: I mean, there are some people that have never will never have a leak.
• 37:55
  SPEAKER_02: Good on you.
• 37:56
  SPEAKER_02: There's other people that may only leak once or twice, and there might be some that are regular, and it's normally something that we've done to cause it.
• 38:04
  SPEAKER_02: Oh, yeah, 100%.
• 38:05
  SPEAKER_02: Like, yeah.
• 38:06
  SPEAKER_02: It's not what we're using, it's what we've done or meds or anything.
• 38:10
  SPEAKER_04: We all know our limits, don't we, when we settle into stoma life and then like like you know, like particularly with diet, like if you know there's something you shouldn't eat, but you're really craving it.
• 38:17
  SPEAKER_04: Yeah.
• 38:18
  SPEAKER_04: If I've had a few drinks and I really want it, I'm gonna eat it.
• 38:21
  SPEAKER_04: And I know what's coming.
• 38:23
  SPEAKER_04: And you know what?
• 38:24
  SPEAKER_04: I'll deal with it because in the moment, I don't care.
• 38:27
  SPEAKER_04: Why not?
• 38:29
  SPEAKER_04: Um, let's talk about your incredible swim society.
• 38:34
  SPEAKER_04: Swim society.
• 38:36
  SPEAKER_04: It was unreal.
• 38:37
  SPEAKER_04: It was too good.
• 38:38
  SPEAKER_04: What was it like?
• 38:39
  SPEAKER_04: I mean, you looked incredible.
• 38:40
  SPEAKER_04: Let's start off with that.
• 38:42
  SPEAKER_02: Was it literally a shout-out, like an open cast?
• 38:44
  SPEAKER_00: Yeah, so they did like an Instagram post and said um you've just you need to post like a photo of yourself or like explaining about it.
• 38:56
  SPEAKER_04: Like literally incredible.
• 38:58
  SPEAKER_00: I mean how many bikinis do you think you own?
• 39:00
  SPEAKER_00: Do you know what?
• 39:00
  SPEAKER_00: I don't know.
• 39:01
  SPEAKER_00: I need like a full.
• 39:02
  SPEAKER_00: Mike, how many is she owned?
• 39:03
  SPEAKER_04: You need Mike to like work it out.
• 39:04
  SPEAKER_00: I know, he probably has no idea.
• 39:06
  SPEAKER_00: I don't think he even knows I have that many as well.
• 39:08
  SPEAKER_00: So that's awful.
• 39:09
  SPEAKER_00: Sorry.
• 39:10
  unknown: Sorry.
• 39:11
  SPEAKER_00: No, but it was so good.
• 39:13
  SPEAKER_00: Everyone was just so empowering and you know, just you had all like your hype girls say it was so amazing.
• 39:20
  SPEAKER_04: Oh god, there's nothing better than a hype girl.
• 39:21
  SPEAKER_00: I felt like proper I I felt like Chris Jenna for all the girls, like, oh come on, go for it.
• 39:26
  SPEAKER_00: It was so good there, and Montana's so lovely as well.
• 39:30
  SPEAKER_00: She's just like one of the girls.
• 39:31
  SPEAKER_00: She showed a baby.
• 39:33
  SPEAKER_00: She's she's got a baby now.
• 39:34
  SPEAKER_02: Oh she was absolutely amazing to see though.
• 39:39
  SPEAKER_03: Yeah, it was I had a look at the price of them.
• 39:41
  SPEAKER_02: I was like, I can't get a lot more expected than that.
• 39:45
  SPEAKER_02: Did you get some freebies out of it?
• 39:47
  SPEAKER_02: Yeah, I got I got I mean, how did you feel doing it?
• 39:51
  SPEAKER_02: Because you know, if you're the only what one there with a stomach.
• 39:55
  SPEAKER_02: There was another girl there who had one as well.
• 39:58
  SPEAKER_00: But I did think I was the only one we know of.
• 40:01
  SPEAKER_02: I think it's nice though, that there seems to be a thing now, not of not obviously like the mainstream brands or mainstream, yeah, mainstream shops, but it seems to be that more people, especially with regards to like the swimwear and bits and pieces of the streets.
• 40:14
  SPEAKER_04: Mary Rose She smashed it with Pretty Little Thing.
• 40:18
  SPEAKER_04: How amazing did it?
• 40:19
  SPEAKER_04: Yeah, so Mary Rose, who we all know and have met, who is a lovely, she smashed it with pretty little thing, didn't she?
• 40:25
  SPEAKER_04: With the bikinis and everything.
• 40:27
  SPEAKER_00: How same did she look?
• 40:30
  SPEAKER_02: It is so nice to see though, people with stomachs being represented for things that people as ostomates that we are going to want to wear when we're abroad or wear when we want to go shopping.
• 40:45
  SPEAKER_02: You know, sw swim swimwear you only sit during the spring and summer months.
• 40:49
  SPEAKER_02: Yeah.
• 40:50
  SPEAKER_02: But it is nice to see that companies are using ostomats with swimwear, whether it be one piece or two piece, and kind of giving people the confidence to be able to wear a bikini instead of panicking.
• 41:04
  SPEAKER_02: Because I think the the automatic response to having stoma surgery is that you need to cover up and you shouldn't have to cover up.
• 41:12
  SPEAKER_04: No, but uh it does take a massive adjustment, doesn't it?
• 41:16
  SPEAKER_04: To be able to feel like you don't want to, especially if you haven't got body confidence anyway.
• 41:22
  SPEAKER_02: Yeah.
• 41:23
  SPEAKER_02: Yeah, but there's there's a difference between having body confidence and the the difference of being shamed for having a stoma because everything has been over the course of the years.
• 41:36
  SPEAKER_02: I mean, I had my stoma in 2009, but no social media.
• 41:40
  SPEAKER_02: It was taboo and nasty to have one.
• 41:43
  SPEAKER_02: When I had my stoma surgery in 2016, the only people that I can think of that uh used to represent stomas back then was Sam Cleasby with ulcerative colitis and stomach in a teacup.
• 41:57
  SPEAKER_02: They were the only two ostomates that I can think of that were posting pictures of themselves up with their bags out at the time.
• 42:05
  SPEAKER_02: And it's come such a long way in the last seven, eight years.
• 42:11
  SPEAKER_02: I'd much prefer seeing ostomates being represented by companies uh to promote swimwear and promote body positivity rather than just seeing just random stuff or companies use it using ostomates in a way that they shouldn't be using them.
• 42:31
  SPEAKER_02: Yeah.
• 42:31
  SPEAKER_04: I think there's a clear difference between they've sent someone some free stuff just for that extra promo compared to like what swim society have been doing.
• 42:40
  SPEAKER_04: Because every year they've featured an ostomate, haven't they?
• 42:42
  SPEAKER_04: Yeah.
• 42:42
  SPEAKER_04: The last few years.
• 42:43
  SPEAKER_00: So who was the person the year before?
• 42:45
  SPEAKER_00: I think last year, I think it was Anna.
• 42:49
  SPEAKER_00: Anna Rachel.
• 42:51
  SPEAKER_00: She's just got engaged.
• 42:52
  SPEAKER_04: Yeah, yeah, yeah, yeah.
• 42:53
  SPEAKER_04: So being as you are the queen of bikini wearing, I've now decided to crown you.
• 42:59
  SPEAKER_04: What advice would you give people who are trying to find that confidence this summer when they're on the holidays to wear a bikini with a stoma?
• 43:05
  SPEAKER_00: I'd say it is quite hard, but try and embrace it as much as you can because I think back to the time where I was going through so much and it was so hard.
• 43:16
  SPEAKER_00: And why would I not want to go and embrace my body now after what it's been through?
• 43:22
  SPEAKER_00: But yeah, just go out and try and make the most of it.
• 43:27
  SPEAKER_04: Yeah.
• 43:27
  SPEAKER_04: I mean, and and well, I guess it doesn't mean you have to like wear the skimpiest bikini you can find and just stand on the beach and go, here I am, here's my bag, come at me.
• 43:37
  SPEAKER_04: Is we're not saying that, but yeah.
• 43:39
  SPEAKER_02: I mean, I do the same mixture between low-waisted and high-waisted.
• 43:43
  SPEAKER_04: Yeah, so whatever you feel comfortable in.
• 43:44
  SPEAKER_00: Yeah, definitely whatever you're comfortable in.
• 43:47
  SPEAKER_04: Yeah.
• 43:48
  SPEAKER_00: So but it does it takes time.
• 43:50
  SPEAKER_00: It it does.
• 43:52
  SPEAKER_00: It definitely does.
• 43:53
  SPEAKER_02: I mean, like like tips and tricks for like swimming and travelling abroad, what what advice would you give?
• 44:00
  SPEAKER_00: Definitely take spare bags with you wherever you are, just in case it does decide it wants to peel off, but you'll be fine.
• 44:08
  SPEAKER_04: I think as well, if you've got the right bag, you shouldn't have to pack loads and loads of extra stuff.
• 44:13
  SPEAKER_00: Even maybe uh take a support belt with you just for that extra protection.
• 44:18
  SPEAKER_00: That's a great idea.
• 44:19
  SPEAKER_00: Yeah.
• 44:20
  SPEAKER_04: So we're gonna have to wrap things up, which I don't want to do because I love talking to you.
• 44:25
  SPEAKER_04: Um but what finally advice would you give to anyone struggling to accept this stoma?
• 44:31
  SPEAKER_00: Take it day by day.
• 44:33
  SPEAKER_00: It's it's it's hard, but you'll get you'll get there.
• 44:40
  SPEAKER_02: It is a take it day by day.
• 44:43
  SPEAKER_02: Everybody's journey's different, everyone's different.
• 44:46
  SPEAKER_02: But I think especially like with us like living with Crohn's disease, having a stoma has made life better to a certain degree because we've had stuff taken out, so we don't spend as much time in hospital.
• 44:58
  SPEAKER_02: Doesn't negate the fact that we might still have a flare-up, but it's made it's improved quality of life, hasn't it?
• 45:05
  SPEAKER_02: Definitely.
• 45:06
  SPEAKER_02: So thank you for listening to Beyond the Pouch.
• 45:09
  SPEAKER_02: Um, we hope you've enjoyed the conversation and can take away something from what we've been speaking about, whether that be tips or advice for body positivity, confidence, swimming, going abroad, the usual.
• 45:23
  SPEAKER_02: Um, we'd like to say a massive thank you to Philippa for coming down and taking part.
• 45:28
  SPEAKER_02: It's been lovely seeing you again.
• 45:29
  SPEAKER_02: Thanks for having me.
• 45:30
  SPEAKER_02: And uh we hope you have fun on your next upcoming holiday.
• 45:35
  SPEAKER_02: Oh yeah.
• 45:36
  SPEAKER_02: And uh yeah, thank you to listening to Beyond the Pouch, and we'll see you next time.
• 45:40
  SPEAKER_02: Bye.
• 45:41
  SPEAKER_02: Bye.