Latest / Beyond the Pouch / EP14: Kevin's Mental Health Journey with a Stoma

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EP14: Kevin's Mental Health Journey with a Stoma · Beyond the Pouch

• 0:00
  SPEAKER_01: How did they diagnose you with a Crohn's?
• 0:02
  SPEAKER_03: They told me, you know, it was Crohn's disease, my wife just burst into tears, is gonna die.
• 0:08
  SPEAKER_03: The toll on my mental health was starting to play massively.
• 0:13
  SPEAKER_03: You know, I was having some pretty dark thoughts.
• 0:16
  SPEAKER_02: So you had your stoma formed in 2016?
• 0:20
  SPEAKER_03: I've really kind of struggled with that kind of looking down and kind of seeing it.
• 0:26
  SPEAKER_03: Did I ever think I would put on social media a picture of my top half of my body with my stoma out?
• 0:32
  SPEAKER_03: Never in a million years, and feel proud of that.
• 0:35
  SPEAKER_03: This has helped me.
• 0:38
  SPEAKER_03: Um, it's got me through to where I am now.
• 0:46
  SPEAKER_01: Welcome back to Be on the Pouch.
• 0:47
  SPEAKER_01: We're your hosts for Rachel Louise.
• 0:50
  SPEAKER_01: We are thrilled to be here with you for another episode.
• 0:52
  SPEAKER_01: Today we have a special guest, Kevin, who will share his mental health journey and his experiences in the workplace with a stoma.
• 0:59
  SPEAKER_02: Hi, Kevin.
• 1:00
  SPEAKER_02: Hello, Kev.
• 1:01
  SPEAKER_02: So we have met you already because you are a newly appointed ambassador.
• 1:06
  SPEAKER_02: I am you.
• 1:07
  SPEAKER_02: So we spent some time together at the latest get together.
• 1:10
  SPEAKER_02: We did.
• 1:10
  SPEAKER_02: Did you now crutch free?
• 1:12
  SPEAKER_03: I am crutch-free.
• 1:13
  SPEAKER_03: I am crutch-free, yeah.
• 1:15
  SPEAKER_03: Fantastic news.
• 1:16
  SPEAKER_02: Did you enjoy that?
• 1:17
  SPEAKER_02: Because that was your first experience meeting so many Everostomates, wasn't it?
• 1:22
  SPEAKER_03: Yeah, I I think you know it's something that I've always wanted to do, but obviously never had the opportunity.
• 1:28
  SPEAKER_03: And then when obviously someone reached out to me and and asked me, and you know, to see all you guys doing this day in, day out, it's been fantastic.
• 1:37
  SPEAKER_03: And to be part of that was was great.
• 1:40
  SPEAKER_03: And I thoroughly enjoyed it.
• 1:41
  SPEAKER_03: It was it was brilliant.
• 1:42
  SPEAKER_03: Yeah, it's a lot of fun.
• 1:45
  SPEAKER_03: Thank you.
• 1:45
  SPEAKER_03: Thank you.
• 1:46
  SPEAKER_01: We've all we're all quite friendly, really, aren't we?
• 1:49
  SPEAKER_01: Probably too friendly.
• 1:51
  SPEAKER_03: I did get that.
• 1:54
  SPEAKER_01: It's no place for you, really.
• 1:56
  SPEAKER_01: We've all seen each other in our underwear.
• 1:59
  SPEAKER_01: Far too many times, yeah.
• 2:01
  SPEAKER_01: Yeah, yeah.
• 2:02
  SPEAKER_01: I mean, so obviously, I read your story before you come onto the podcast, and it's kind of a bit similar to mine.
• 2:09
  SPEAKER_01: Obviously, my timeline's about five years before you, but you suffered a burst appendix, and I remember when that happened to me, and going to the doctors, and like they said to you, and you're like, it doesn't happen to men, so what happened?
• 2:24
  SPEAKER_03: Yeah, I I mean I always remember it's very vivid.
• 2:27
  SPEAKER_03: I mean, I was working, I was a retail manager at the time.
• 2:30
  SPEAKER_03: I remember bending down to pick something up in the corner of the office, and felt this big pop in my stomach.
• 2:37
  SPEAKER_03: And I thought, God, what what what was that?
• 2:40
  SPEAKER_03: And I turned to someone, I thought, I think my appendix had just gone.
• 2:44
  SPEAKER_03: And the lady I was working with, she went, it's never gonna happen.
• 2:47
  SPEAKER_03: You know, you you'd be rolling round on the floor.
• 2:50
  SPEAKER_03: Um, didn't feel well, you know, the rest of the day, drove home and um, you know, had a had a good hour's drive back home and you know, still didn't feel too well and went to the hospital.
• 3:03
  SPEAKER_03: Um out of hours, they they told me it was, you know, a water infection and just to take some antibiotics.
• 3:10
  SPEAKER_03: Um five days later, five different appointments with different doctors all saying the same thing.
• 3:18
  SPEAKER_03: Um I I rang my dad and said uh something not right.
• 3:22
  SPEAKER_03: And um he he took me to hospital and just said, you need to sort him.
• 3:27
  SPEAKER_03: And um yeah, within within you know 30 minutes of seeing the doctor, was was kind of told I was going for an operation.
• 3:36
  SPEAKER_03: Um they thought my appendix had burst, and kind of that was the the diagnosis, I guess, at that point.
• 3:45
  SPEAKER_03: Um worried, scared because I'd never had an operation, I'd never even been in hospital, you know, stayed over and to be told straight away you're going in for an operation.
• 3:56
  SPEAKER_03: And almost what I didn't realise at that time what was gonna start the journey of something quite incredible of where we are today.
• 4:05
  SPEAKER_01: Yeah.
• 4:06
  SPEAKER_01: I mean, obviously, my appendix burst in 2002, like end of 2002, and I was the same.
• 4:12
  SPEAKER_01: I was working at a petrol station, I used to do the night shift, I used to do like the night night hour shift through to like 6 a.m.
• 4:18
  SPEAKER_01: in the morning.
• 4:19
  SPEAKER_01: And my appendix went when I was always like, I felt it go.
• 4:22
  SPEAKER_01: And I remember taking ibuprofen and paracetamol, and nothing was making me feel better.
• 4:28
  SPEAKER_01: Got sent home from A E the night before, being told it was a UTI, and it was only because I collapsed at work that my mum got me and rushed me up to the hospital, and the next thing I know I'm being taken down to a theatre.
• 4:43
  SPEAKER_03: I don't even remember because I was septic, I didn't even remember being taken down to theatre until I come round after having it done, which is when I found out I was allergic to some morphine, but yours was a lot worse than what mine was, and Yeah, I I mean it took i in in total of you know them kind of trying to pack, trying to um sew up the the the wound that just kept opening with pressure.
• 5:10
  SPEAKER_03: I mean, the pressure kept you know, to the point of like a pyramid on the side of my my belly, and it would just pus.
• 5:20
  SPEAKER_03: And it would be horrendous, you know, and it took 16 weeks in total for that uh infection to clear up.
• 5:26
  SPEAKER_03: And, you know, I I mentioned before, you know, of them threading a uh baby feeding tube through um a hole this side of my stomach and it coming out the other side, and you know, that was the track of infection that had been left, um, and them trying to resolve that over time.
• 5:44
  SPEAKER_01: So did they check you for MRSA?
• 5:47
  SPEAKER_03: Um maybe.
• 5:50
  SPEAKER_03: I'm not sure at that point.
• 5:54
  SPEAKER_03: It was a blur.
• 5:55
  SPEAKER_03: Yeah.
• 5:55
  SPEAKER_03: You know, I've been rushed in, uh, I'm kinda they're they're prodding, they're poking.
• 5:59
  SPEAKER_03: Yeah.
• 6:00
  SPEAKER_03: I haven't got a clue what they're doing.
• 6:01
  SPEAKER_01: Was you still working during all of this?
• 6:04
  SPEAKER_03: Yeah, I mean, I I'm very proud worker.
• 6:08
  SPEAKER_03: Um, you know, I I come from a family where my dad's very old school, you know, kind of gaffer in, you know, manufacturing.
• 6:16
  SPEAKER_03: So being that old school, you get to work.
• 6:19
  SPEAKER_03: You know, if you're sick, you get to work.
• 6:21
  SPEAKER_03: Um so yes, I worked throughout it, and even when, you know, I was still having that infection um and it's still been there, um, I was still going into work.
• 6:33
  SPEAKER_03: And yes, they supported me uh by eventually sending me home and and and saying, look, enough's enough, you need to be at home and recover.
• 6:43
  SPEAKER_03: Um, but I I think throughout this whole journey, um, I've learnt really to probably take more time for myself and make sure I take the time to recover.
• 6:55
  SPEAKER_03: And I think you only learn that with experiences and situations that happen.
• 7:00
  SPEAKER_03: Remember, I I'd not had anything like this happen.
• 7:03
  SPEAKER_03: Yeah.
• 7:04
  SPEAKER_03: I'm almost like it's happened, I'm just gonna get back to work tomorrow scenario.
• 7:09
  SPEAKER_03: It's sort of like that.
• 7:10
  SPEAKER_01: Am I right in saying you developed a fistula after you had your appendix removed?
• 7:14
  SPEAKER_03: Yeah, yeah.
• 7:15
  SPEAKER_03: So that was pretty much what that kind of was, you know, that that tunnel, that fistula.
• 7:21
  SPEAKER_03: Um, and we talk about fistulas with with Crohn's, you know, as as I progressed through my.
• 7:26
  SPEAKER_01: I mean, it's it's a surprising that you didn't get a diagnosis then, because obviously post-doc fistula is common in people with Crohn's with Crohn's disease.
• 7:34
  SPEAKER_03: I I think at that point, you know, they they did what they did, they put me back together and almost just sent me on my my way.
• 7:45
  SPEAKER_03: Um I guess after that things started to not feel right in that area.
• 7:54
  SPEAKER_04: Yeah.
• 7:54
  SPEAKER_03: And what I would attribute to kind of just belly aches and I I always laugh now.
• 8:01
  SPEAKER_03: We I mean, I say to my wife, I says, I'm sure your mum's like was trying to food poison me.
• 8:07
  SPEAKER_03: And and and honestly, we would go around for Sunday dinner, and you know, I I would eat my Sunday dinner and I would literally rush off to the toilet within seconds.
• 8:16
  SPEAKER_03: And I was like, Jen, I'm pretty sure your mum's doing something.
• 8:21
  SPEAKER_03: And uh she was like, it can't, it can't be, it can't be.
• 8:25
  SPEAKER_03: But that really was the start of me questioning doctors next 15 years.
• 8:32
  SPEAKER_03: What was going on?
• 8:34
  SPEAKER_03: I've had the birth appendix, still got these pains.
• 8:38
  SPEAKER_03: What now?
• 8:39
  SPEAKER_01: I mean, you were diagnosed the year that I gave birth to my daughter, so she's 15 this year, so this would be your 15-year anniversary.
• 8:47
  SPEAKER_01: How did they diagnose you with a Crohn's?
• 8:50
  SPEAKER_03: Yeah, it it it it was a bit of a whirlwind.
• 8:53
  SPEAKER_03: I mean, um, how how it all happened.
• 8:55
  SPEAKER_03: I mean, I I went into hospital, they obviously uh admitted me with this pain.
• 9:02
  SPEAKER_03: Um I remember going on to this really new ward that they'd I can still see it now, this new ward that they'd got.
• 9:08
  SPEAKER_03: Um and they wanted to do some tests.
• 9:13
  SPEAKER_03: So they they did the MRIs and everything else, and then they give me the barium drink, which is the dreaded barium drink, which I think we've all probably had.
• 9:23
  SPEAKER_03: Um trying to drink something that resembles concrete is not chalk, wasn't it?
• 9:28
  SPEAKER_01: It was a basically liquid chalk.
• 9:30
  SPEAKER_03: Is not the greatest thing.
• 9:31
  SPEAKER_03: Um so once I'd once I'd done that, I mean that was the day that kind of the diagnosis was given.
• 9:40
  SPEAKER_03: Um, and they they literally brought up the the scan, the barium scan.
• 9:45
  SPEAKER_03: And in simple terms, if you draw a line on a piece of paper, that was the flow through my bowel, and that's how constricted down the bowel was, almost to the point that it would perforate at any time.
• 9:59
  SPEAKER_03: And you know, they they told me, you know, Crohn's disease, my wife just burst into tears, he's gonna die, you know.
• 10:07
  SPEAKER_03: Literally, he's gonna die.
• 10:09
  SPEAKER_03: Because you know, 2008, uh 2009, sorry, um you know, w nobody or I didn't know, I'd never even heard of it.
• 10:19
  SPEAKER_03: Yeah, I'd never even heard of Crohn's disease.
• 10:21
  SPEAKER_03: And it's my wife and either get getting that diagnosis, not really understanding, neither of us, you know, we were very young, you know.
• 10:29
  SPEAKER_03: I I I was young in in my eyes to to to have that.
• 10:33
  SPEAKER_03: There's no age on this, by the way, but you know, the I felt I was quite young.
• 10:37
  SPEAKER_03: And then as we started to talk to people, you'd get individuals coming up and going, you know, if you told them, they'd go, God, you're young to have that.
• 10:46
  SPEAKER_03: And you're always thinking, is this is this an old person's kind of you know, diagnose what is it?
• 10:53
  SPEAKER_03: And I I didn't have um a lot of information I felt at that time.
• 10:59
  SPEAKER_03: You know, you have your IBD nurses which do a fantastic job, but you know, for me you're almost just that extra number.
• 11:08
  SPEAKER_03: I'm not saying that's the case with everyone, but I just felt you you were in, had your appointment, given a few tips and you know, eating, diet, you know, change, etc.
• 11:20
  SPEAKER_03: So You're not right.
• 11:21
  SPEAKER_02: I suppose when you're in that headspace, you're not there with a list of things.
• 11:25
  SPEAKER_02: You haven't thought about what to ask, do you?
• 11:26
  SPEAKER_02: It's always when you go away that you think, oh, I wish I'd asked XYZ.
• 11:31
  SPEAKER_01: I mean, f from diagnosis to you having stoma formation, you'd had like three resections, hadn't you?
• 11:37
  SPEAKER_03: Yeah, I I mean that was interesting.
• 11:39
  SPEAKER_03: I mean, I I was at obviously uh the local hospital to to myself, um, George Elliott, and um, you know, they they were doing a great job.
• 11:50
  SPEAKER_03: They were they were seeing what was there, they were dealing with it at the at the time.
• 11:54
  SPEAKER_03: But then it became I I was still having the same symptoms, and there was a battle with the doctors and the surgeons, and there was almost a point of them saying, We can't see what you're kind of saying is is happening.
• 12:09
  SPEAKER_03: You know, there's there isn't any active Crohn's from what we can see from your scans and things.
• 12:15
  SPEAKER_03: Um, and again, you know, that really set what happened throughout my journey where I was having these um episodes or or you know resections, but it was the doctor and the support and the conversations that we were having meant that you know I could say to them, um, you know, I'm I I I've got this pain, I've I've got this ailment, and they they've opened me up and found out there's active Crohn's there.
• 12:46
  SPEAKER_03: And I I guess, you know, all the way through this, since I moved to Warwick, you know, I've had a very good surgeon who's listened to me all the way, and even when the signs haven't been there, he has listened and supported me in a way that, you know, he's done what he's needed to do.
• 13:05
  SPEAKER_03: The three resections, you know, were just a case of them going in and snipping away and but this is the thing, this is what happens with with Crohn's, the longer you have it, the more your body gets used to it.
• 13:17
  SPEAKER_01: So you don't present as a new patient, you present so differently.
• 13:20
  SPEAKER_01: Yeah.
• 13:20
  SPEAKER_01: And I mean, the last decade I've always been surgically dealt with.
• 13:24
  SPEAKER_01: I still see the IBD team, I'm still on medication for life, but I'm still always surgically managed because what doesn't appear up on bloods is different to when they open me up.
• 13:34
  SPEAKER_01: Yeah, yeah.
• 13:35
  SPEAKER_03: It's always too it's it's too very similar, yeah, very, very similar.
• 13:39
  SPEAKER_01: And I mean you went to a different hospital, didn't you, and had more tests and more examinations.
• 13:45
  SPEAKER_01: Yeah.
• 13:45
  SPEAKER_01: And it was actually the president of the European Crohn's titles was your surgeon.
• 13:50
  SPEAKER_01: Yeah, yeah.
• 13:51
  SPEAKER_01: And how did you feel with him obviously doing that resection?
• 13:55
  SPEAKER_01: I uh the last one.
• 13:57
  SPEAKER_03: Yeah, I I went obviously private at the stage that I wasn't agreeing with, you know, the the local hospitals.
• 14:04
  SPEAKER_03: So I I went private, spoke to Simon, um in obviously had the meeting, consultation with him.
• 14:12
  SPEAKER_03: Um and I felt that, you know, this this guy clearly knows what he's doing.
• 14:19
  SPEAKER_03: You know, he clearly knows all the things he's gonna put me right.
• 14:22
  SPEAKER_03: Um, this will be again not knowing what really Crohn's was.
• 14:28
  SPEAKER_03: Um this guy's gonna put me right.
• 14:30
  SPEAKER_03: I'm gonna be back healthy again, no problem.
• 14:33
  SPEAKER_03: He knows what he's talking about.
• 14:35
  SPEAKER_03: Um we did all the tests, we we had another resection.
• 14:39
  SPEAKER_03: Um and yeah, I mean it gave me a little bit of respite until you know it came out.
• 14:46
  SPEAKER_01: Yeah, but the problem that you've got is the more surgery you have, the harder it is to recover from each surgery.
• 14:53
  SPEAKER_03: It's yeah, and the more they're cutting you open, the more scars that are being left inside, the adhesions, you know, as we all know.
• 15:00
  SPEAKER_03: Um, you know, over time, and um as we'll go through, you know, I've had up to nine surgeries.
• 15:08
  SPEAKER_03: Nine times going in is quite a lot of work there.
• 15:12
  SPEAKER_03: So yeah.
• 15:13
  SPEAKER_02: And you had a young family at the time.
• 15:15
  SPEAKER_02: You know, your life can't stop at home, can it?
• 15:18
  SPEAKER_02: Because you just have this little thing like nine operations.
• 15:20
  SPEAKER_03: Well, we had we we we had the we had the youngsters, um and we we had a third in 2009, we got married in 2010 as all this is going on.
• 15:33
  SPEAKER_01: Um, you know, it it was a lot of personal things happening as well, and it exciting kind of things in life that you would do, but still having to manage your symptoms, because yeah, between 2013 when you had that resection to your next one, you had two year you had a two-year respite, didn't you?
• 15:53
  SPEAKER_01: Yeah.
• 15:54
  SPEAKER_01: So what happened?
• 15:55
  SPEAKER_01: Because y obviously you were on like feeding tubes, liquid diet.
• 15:59
  SPEAKER_03: Yeah, I I I I think for me this was where I really then started to struggle.
• 16:06
  SPEAKER_03: Um I mean, to go on to feeding tubes.
• 16:11
  SPEAKER_03: Um, you know, the the dieticians, the surgeons were just like, you know, we need to give the bowel a rest.
• 16:18
  SPEAKER_03: We've got to give the bowel a rest.
• 16:20
  SPEAKER_03: It's just not recovering.
• 16:22
  SPEAKER_03: Um and you know, I I remember having the modulin drinks first, and then that didn't work, and then they put me on the feeding tubes, and I I I I just cannot even explain how hard that was.
• 16:38
  SPEAKER_03: I mean, going home after a day's work, you know, I was in a customer-facing role, had the um uh feeding tube in, obviously, you know, it's very visible.
• 16:50
  SPEAKER_03: Yeah.
• 16:51
  SPEAKER_03: Um, customers asking what's going on, people actually ask you.
• 16:56
  SPEAKER_02: Yeah.
• 16:56
  SPEAKER_03: Yeah, yeah, yeah.
• 16:58
  SPEAKER_03: They would be quite open and and ask.
• 17:00
  SPEAKER_02: How um how did you deal with that in your place of work, being asked?
• 17:04
  SPEAKER_02: Um It's a struggle.
• 17:05
  SPEAKER_03: I uh yeah, it it was difficult, and because obviously you've you do forget it's there when you're interacting with people.
• 17:14
  SPEAKER_03: But if somebody's interacting back and asking you about it, it's quite a reminder.
• 17:18
  SPEAKER_03: So it was really difficult.
• 17:20
  SPEAKER_03: I mean, I I would just say, you know, just uh this is what I'm having done, and you know, it's a feeding tube, it's I just didn't go too much into it.
• 17:28
  SPEAKER_03: Um, you know, they're customers at the end of the day, they're not kind of friends or family.
• 17:33
  SPEAKER_03: I don't want a full discussion about it.
• 17:35
  SPEAKER_03: It was kind of try and uh pass that off.
• 17:38
  SPEAKER_03: But I I think the the hardest point was getting home.
• 17:42
  SPEAKER_03: I mean, I don't think smiley faces, uh dinosaur nuggets have ever looked as so appealing as what it is when you've got a feeding tube in, you know.
• 17:51
  SPEAKER_03: Um but to try and mentally deal with that cooking food for your children while you're not able to eat and then hook up to the pump for 12 hours overnight to then kind of be fed and then go into work.
• 18:08
  SPEAKER_03: And you know, as I said to you before, very proud, very career-driven.
• 18:13
  SPEAKER_03: So it was HR and my regional manager that actually came in and sent me home.
• 18:19
  SPEAKER_03: They forced me to go home and said, You we cannot have you working in store like this, you know, it's your health.
• 18:27
  SPEAKER_03: Think about your health.
• 18:29
  SPEAKER_01: I mean, how did you manage with the feeding tube?
• 18:31
  SPEAKER_01: Because I had a really bad habit of being able to aspirate those, so I ended up having a Hickman line.
• 18:36
  SPEAKER_03: Yeah, I I could do it, I could do everything that needed to be done and check in, you know, the fluid and uh and everything, but um mentally I I was I was starting to struggle.
• 18:50
  SPEAKER_04: Yeah.
• 18:51
  SPEAKER_03: Um and and you know, you've got your you've got your you know, your team around you, your family, you know, it's okay, it's but with all due respect, you know, you're not having to deal with this.
• 19:03
  SPEAKER_03: And uh a a basic requirement of you eating and not being able to, switched off overnight, is very hard to deal with.
• 19:12
  SPEAKER_01: Yeah, I found it hard because my daughter's father wasn't supportive, so of course I'm on a liquid diet, I was on the elemental diet at the time, and I'd been on it for six months, and all I used to get every night, well, why don't you eat?
• 19:24
  SPEAKER_01: I can't eat in front of you if you're not eating, and I'm like, but I can't eat.
• 19:29
  SPEAKER_01: Oh, but if you just have a little something, I can't have a little something.
• 19:33
  SPEAKER_01: I have I have no choice, I've got to do this.
• 19:36
  SPEAKER_02: I mean, how how were your energy levels if you fed overnight?
• 19:39
  SPEAKER_02: How would you manage in the daytime then with the kids and with family life?
• 19:43
  SPEAKER_03: I I mean that you would obviously have you would be able to have smaller bottles that you could kind of pump in or syringe in um over the over the day.
• 19:54
  SPEAKER_03: But you know, you I w I was at work at the time and you know, peop people around you can't stop eating.
• 20:01
  SPEAKER_03: Um and it was almost they were taking themselves away from, you know, the rest area because they didn't want to eat around me.
• 20:10
  SPEAKER_03: That wasn't fair on them either.
• 20:11
  SPEAKER_03: So I was impacting them.
• 20:13
  SPEAKER_03: And although it wasn't a big thing for them, and as their manager, as a friend, you know, they were very supportive.
• 20:21
  SPEAKER_03: But it was still influencing their day-to-day.
• 20:24
  SPEAKER_03: They don't come into work to not have the rest and time.
• 20:27
  SPEAKER_03: Yeah.
• 20:28
  SPEAKER_03: But I felt that I was affecting that.
• 20:30
  SPEAKER_01: I know, but maybe they thought that they was being respectful in the Oh, 100%, yeah.
• 20:35
  SPEAKER_03: They they felt that.
• 20:36
  SPEAKER_03: That it was their way of supporting me.
• 20:38
  SPEAKER_01: Yeah.
• 20:39
  SPEAKER_03: In in that time, yeah.
• 20:40
  SPEAKER_01: I mean, how long was you on that for?
• 20:42
  SPEAKER_01: Because you you then had your stoma formation, but for I'm looking at it like you was maybe on that liquid diet for a year.
• 20:52
  SPEAKER_03: Um I I would say around the nine nine about the nine months it was.
• 20:57
  SPEAKER_03: Um and I always remember the the delivery guy turning up and when it first turned up, not really expecting, you know, what what was gonna ensue and what I was expected to do.
• 21:09
  SPEAKER_03: And boxes and boxes would turn up, like filled the hallway up.
• 21:14
  SPEAKER_03: And I was like, wow, but th this is keeping me alive, technically.
• 21:21
  SPEAKER_03: I mean, and this is, you know, reducing the inflammation, hopefully, in the in the bowel, what the doctors are saying, that they're telling me to rest the bowel, it'll it'll ease it.
• 21:31
  SPEAKER_03: Um I think you know this was also a measure as well to make sure the bowel was in the best of health that it could be, ready to have the stoma formation.
• 21:42
  SPEAKER_02: So did you know you were gonna the stoma was the end goal at this point?
• 21:46
  SPEAKER_03: Or was it just discussed?
• 21:47
  SPEAKER_03: No, no, I mean it was me that I I I basically said I'd had enough.
• 21:54
  SPEAKER_03: Yeah.
• 21:54
  SPEAKER_03: You know, the the the toll on my mental health was starting to play.
• 22:00
  SPEAKER_03: Massively.
• 22:01
  SPEAKER_03: And I I I was struggling.
• 22:03
  SPEAKER_03: And you know, it's it it's very difficult to try and explain to someone how that makes you feel or how you feel at that time.
• 22:13
  SPEAKER_03: Um and I I just went into doctors and I just must m well my surgeon and I said I can't do this anymore.
• 22:21
  SPEAKER_03: Can't do it.
• 22:22
  SPEAKER_03: And you know, I was having some pretty dark thoughts, and I guess at that time that's probably where I started to have them thoughts quite a lot of the time.
• 22:33
  SPEAKER_02: I mean you you seemed to come across as quite a resilient person and you had a good family around you, but even then, you know, you you needed something had to happen, didn't it?
• 22:43
  SPEAKER_03: Yeah, I I mean, yes, I I I mean agreed, you know, a lot of people say, you know, you you are a very resilient person, Kev.
• 22:51
  SPEAKER_03: And you know, within my working career, you know, a lot of individuals have that's one of the big things or characteristics they say that I bring to the table.
• 23:00
  SPEAKER_03: But that's only over real kind of gritted determination for myself to get through this, you know.
• 23:07
  SPEAKER_03: I'm trying my hardest to deal with what's thrown at you.
• 23:11
  SPEAKER_03: And, you know, at that point every day was a battle.
• 23:16
  SPEAKER_03: Yeah.
• 23:16
  SPEAKER_03: It was a battle.
• 23:18
  SPEAKER_01: And I think obviously you're a man, you're expected to provide and do everything.
• 23:24
  SPEAKER_01: Did you feel like that also impacted your mental health?
• 23:27
  SPEAKER_01: Did you feel a lot weaker and felt like you should be the strong one, but you're relying on your support system around you?
• 23:33
  SPEAKER_03: Yeah, I mean I I, you know, I I'm maybe old school in the way that I think that I should be able to provide.
• 23:41
  SPEAKER_03: You know, there's no rules in our house that say, you know, anyone can do no one can do this or do that, you know, but I feel that as as the guy, you know, I I want to I want to provide uh for my family, for my wife, I want to give them all the things that they want.
• 23:57
  SPEAKER_03: You know, I was quite privileged that you know my parents gave me everything that they could, and if I can do that with my family, that's great.
• 24:07
  SPEAKER_03: Um, but obviously, you know, being in and out of work and I guess that worry of them not knowing when when's he gonna be back, how long's he gonna be off?
• 24:19
  SPEAKER_03: You know, okay, we're gonna cover your salary this month, but we need to start seeing you back in work.
• 24:27
  SPEAKER_04: Yeah.
• 24:28
  SPEAKER_03: Um, you know, and at that point, you know, that employer was very was very good in how they delivered what they what they did for me, the support that they give, you know, that then payments were not never ending, but they were more than what was in your normal standard policies.
• 24:48
  SPEAKER_03: And you know, there was more support there given to me than what you would normally assume or see.
• 24:54
  SPEAKER_01: Yeah, because with HRs, there is actually an insurance that they have that covers staff with long-term medical issues.
• 25:02
  SPEAKER_03: Yeah.
• 25:02
  SPEAKER_03: Yeah.
• 25:03
  SPEAKER_01: So they're not losing out in paying the member of staff, and the members member of staff has then got that security to know that they that yes, they're getting paid whether it's full pay or sick pay at the moment, but they've got that security in they're gonna when they do go back to work.
• 25:17
  SPEAKER_03: And and I think that's you know, uh as businesses probably need to be better explaining that to individuals.
• 25:25
  SPEAKER_03: Now, you know, you've got that old age thing that people might take more than they should.
• 25:31
  SPEAKER_03: But what about the genuine people you know that really are struggling?
• 25:36
  SPEAKER_03: You know, I was one of my operations, I knew that I I'd just started the a new job in the July, in the October, I was having a resection done.
• 25:47
  SPEAKER_03: I wasn't able to have any um sick pay or anything.
• 25:52
  SPEAKER_03: You know, I just started a new role to take holiday.
• 25:56
  SPEAKER_03: And, you know, I took the holiday that I could have had, a little bit of an agreement with them, but I was back in work after six weeks.
• 26:04
  SPEAKER_03: I was still having my stomach packed.
• 26:06
  SPEAKER_02: Oh my gosh.
• 26:08
  SPEAKER_03: So I was still having my stomach packed twice a day.
• 26:10
  SPEAKER_03: You know, in the morning I'd go to doctors, I'd go to work.
• 26:14
  SPEAKER_03: In the afternoon, I'd go back to doctors, repacked, ready for the morning to go back to doctors and so on.
• 26:20
  SPEAKER_03: It wasn't even back to the doctors, was it?
• 26:21
  SPEAKER_02: It was up to the it was up to the clinic to have your wings packs.
• 26:25
  SPEAKER_02: So you had your stoma formed in 2016.
• 26:29
  SPEAKER_02: So how much were you prepared for that?
• 26:31
  SPEAKER_02: Was it urgent?
• 26:33
  SPEAKER_03: Um I mean, in my head, I I thought I prepared for it as best as I could.
• 26:40
  SPEAKER_03: Um I wore a fake stoma.
• 26:43
  SPEAKER_02: Well, you wore the fake stoma.
• 26:44
  SPEAKER_03: I wore the fake foam stoma.
• 26:47
  SPEAKER_03: Um I thought, you know, I'm gonna rock this.
• 26:50
  SPEAKER_03: Um I got a selection of bags, uh rocking the bags, filling them up with a bit of water just to try and get a bit of weight in there, just to try and understand actually what it is.
• 27:04
  SPEAKER_01: That said, it doesn't set you up for what you wake up to, does it?
• 27:08
  SPEAKER_03: It doesn't.
• 27:10
  SPEAKER_03: And I I I try and explain to people, I don't think anybody can prepare you for something that should be on the inside is now on the outside.
• 27:20
  SPEAKER_03: And uh yeah, I I kind of struggled with inside out.
• 27:27
  SPEAKER_03: Yeah, yeah, inside out.
• 27:29
  unknown: Yeah.
• 27:30
  SPEAKER_02: I mean, I've s I've said this loads of times before.
• 27:32
  SPEAKER_02: I'd I had a child with a stoma already, and I couldn't look at mine.
• 27:36
  SPEAKER_02: I I could not.
• 27:37
  SPEAKER_02: I I'd looked after Jake for five years with one, and I thought, I'm gonna boss this.
• 27:41
  SPEAKER_02: This isn't gonna face me.
• 27:42
  SPEAKER_02: And I looked at it, I felt physically sick, and I couldn't look at it for days.
• 27:46
  SPEAKER_01: Do you know what?
• 27:46
  SPEAKER_01: I get this all the time because my stoma's really small.
• 27:49
  SPEAKER_01: I'm known for showing my stoma, and I get people, oh, it's really sore, I'm really jealous of your stoma.
• 27:54
  SPEAKER_01: I'm like, mate, if you'd have seen it, then I'll come round from surgery.
• 27:58
  SPEAKER_01: It was a totally different story.
• 28:00
  SPEAKER_01: What have you done to me?
• 28:02
  SPEAKER_02: They changed so much.
• 28:03
  SPEAKER_02: I mean, were you what advice would you give to I mean, you know, not men in particular, everyone, but particularly if you're the type of person that doesn't want to go down the route of trying the fake one and all that.
• 28:16
  SPEAKER_02: Is there what did you do that really helped?
• 28:19
  SPEAKER_02: Was it that that got you in the psyche?
• 28:21
  SPEAKER_03: I I think that was that was the main thing that got me, me, me into understanding or maybe visualizing.
• 28:29
  SPEAKER_03: I think for me it was a visualise visualization point that I needed.
• 28:33
  SPEAKER_03: I needed to be able to look down and see what I was gonna see or what others were gonna see.
• 28:40
  SPEAKER_03: Because, you know, this is a two-way thing, you know, what's my wife gonna see?
• 28:45
  SPEAKER_03: And I think the it doesn't matter how much information comes from, your stoma nurses or your you know, your surgeon.
• 28:54
  SPEAKER_03: And you know, my surgeon was very, very good.
• 28:56
  SPEAKER_03: He he is absolutely amazing, and we have a really good relationship.
• 29:01
  SPEAKER_03: Um, you know, he would draw me diagrams, he would give me advice, he would, you know, talk me through loads of stuff, but I needed to visually see you know how that was gonna look.
• 29:13
  SPEAKER_03: And I think the difficulty for me was once I let Jen see that and that part of me, I then started to also think, you know, yeah, because she's not gonna find me.
• 29:28
  SPEAKER_02: Yeah, I I think uh we all go through that mindset, don't we?
• 29:33
  SPEAKER_01: If worry.
• 29:34
  SPEAKER_01: I've got so we all know as a general whole that mental health support following stoma surgery is not a thing.
• 29:42
  SPEAKER_01: Yeah.
• 29:43
  SPEAKER_01: And there are times there are people that feel like they're not given enough advice, they're not taught correctly, and I've got here that you felt very isolated early on, even with the stoma nurses.
• 29:56
  SPEAKER_01: Why did you feel so isolated?
• 29:57
  SPEAKER_03: Yeah, I I I think is is it a man thing?
• 30:00
  SPEAKER_03: Is it the fact that I'm kind of trying to be the big bravado and I I'm I'm okay, you know, leave leave me.
• 30:09
  SPEAKER_02: It sounds like that's your coping mechanism in some respects.
• 30:12
  SPEAKER_02: Was it, you know, I'm just gonna keep going, I'm gonna go to work, I'm gonna do this.
• 30:16
  SPEAKER_03: I I I think the to try and take the focus off what's there to have lots of other things going on, you know.
• 30:24
  SPEAKER_03: I have to have things happening all the time.
• 30:28
  SPEAKER_03: You know, people call me a magpie because I'm I'm almost at work, I'm almost like, you know, oh I like that, oh I like that, oh I like that.
• 30:35
  SPEAKER_03: And you know, I've got lots of different things going on at different times, and I think that was one way that I could cope with it.
• 30:43
  SPEAKER_03: But, you know, if you go onto, you know, the social medias now, you know, you'll see lots of females sharing um their stories, photos, and you know, at that point I felt, you know, that there wasn't a lot of guys that I could talk to.
• 31:00
  SPEAKER_03: And is it could I could I reach out to a female?
• 31:04
  SPEAKER_03: Could a guy reach out to a female on Instagram when you hear all the hear all the stories?
• 31:12
  SPEAKER_01: There's always a thing, so it depends how the start of the message is worked is.
• 31:18
  SPEAKER_01: If it's hey babe, then it's hey babe, they know.
• 31:22
  SPEAKER_01: But most people would be hi, I've been following you for a while, I don't know how to reach out, but I'm having an issue.
• 31:28
  SPEAKER_01: That's absolutely fine.
• 31:30
  SPEAKER_01: I know the genuine between the non-genuine.
• 31:34
  SPEAKER_03: It was, you know, I I wasn't active on on Instagram, wasn't massively active, you know, I wasn't massively active on Facebook, you know, I was very much career kind of driven, just getting on with stuff.
• 31:48
  SPEAKER_03: And um it wasn't really my norm.
• 31:52
  SPEAKER_03: And, you know, you can ask the snowman nurses for advice, etc.
• 31:57
  SPEAKER_03: That's great, you know, they will give all the advice.
• 31:59
  SPEAKER_03: And you know, the team that I have at Warwick are fantastic.
• 32:03
  SPEAKER_03: They do I mean, I can call them and you know they they're calling me back the same day.
• 32:07
  SPEAKER_03: It's great, you know, that if I need it.
• 32:10
  SPEAKER_03: Um but when it's first formed and lying there, you know, when your visitors have all gone home, I I had a room on my own, on my own when I first come back from surgery.
• 32:24
  SPEAKER_03: So my parents had gone, my wife had gone, nurse had gone, I was on my own.
• 32:28
  SPEAKER_04: Oh, I see.
• 32:28
  SPEAKER_03: And I've got a see-through bag.
• 32:31
  SPEAKER_03: Yes, it is amazing having the room, but you have that see-through bag.
• 32:35
  SPEAKER_02: Wish they what like if they used right, this is a shameless plug, but whatever.
• 32:39
  SPEAKER_02: No, no, no, that there is a reason for I I get the reason, I get it, but it I don't know, I think it'd be nice if I don't know, I know mine was just there and I thought, oh, I wish it had it had been covered, and then I could get rid of whatever was covering it to see the bag.
• 32:57
  SPEAKER_01: Yeah, but this this is the thing.
• 32:59
  SPEAKER_01: As much as we can show me plug the bags that we use, which are by the way, FY amazing.
• 33:05
  SPEAKER_01: However, um th that there is a reason for that bag.
• 33:09
  SPEAKER_01: That bag is a large output bag for one, it's huge.
• 33:13
  SPEAKER_01: So that means that it's easier for the nurses to empty when the patient is on complete bed rest.
• 33:19
  SPEAKER_02: Oh no, I mean the fact that I know I was lying there and the bag was there, I I it wasn't covered, and I don't know whether it was because I was out of it and they'd been to check it and didn't put my blanket back up, but I remember looking down and being, oh no.
• 33:32
  SPEAKER_01: And then you've got so for those of us with crowns, we generally have a habit of stuff trying to recess back inside instead of staying where it's meant to.
• 33:41
  SPEAKER_01: So they put in like a long like thing that's called a bridge that stops it from pro from falling back in, and obviously that bag has to stay on until the bridge has been removed.
• 33:52
  SPEAKER_02: How long is that then?
• 33:54
  SPEAKER_01: It depends.
• 33:54
  SPEAKER_01: Most surgeons will normally leave the bridge on maybe four or five days before they pop it off.
• 34:00
  SPEAKER_02: I mean, with your stoma when you saw it, what was your your first thoughts?
• 34:08
  SPEAKER_02: Um did it look like how you thought it was gonna work?
• 34:19
  SPEAKER_03: Because I I'd kind of yes, I'd asked for it.
• 34:24
  SPEAKER_03: Um I didn't know how it was gonna work after that.
• 34:27
  SPEAKER_03: Obviously, now it's formed, now it's there.
• 34:30
  SPEAKER_03: It's almost like wow, why d why did I ask for this?
• 34:34
  SPEAKER_03: You know, and I I yeah, I I r I've really kind of struggled with that kind of looking down and kind of seeing it and you know It's very swollen, it's very red.
• 34:47
  SPEAKER_01: Sometimes if it's not working properly, it's black, yeah.
• 34:51
  SPEAKER_03: It's just And I think that first, you know, them initial kind of bag changes as well are quite difficult.
• 34:58
  SPEAKER_03: You know, the getting used to smells or, you know, changing it or cutting your bags or, you know, waking up and there's been a leak and you think, is this how it's gonna be?
• 35:12
  SPEAKER_01: It's alright.
• 35:12
  SPEAKER_01: I'm having a gig I'm having a giggle to myself because if I think of my first bag change versus me trying to change my bag to the countdown theme tune, um, like in 30 seconds, like the first bag change ever is like half an hour because you're so careful and because it's so sore and everything else.
• 35:30
  SPEAKER_01: I was just having a giggle to myself thinking first bag change versus me trying to get it done in a 30-second countdown reel for Instagram.
• 35:39
  SPEAKER_02: I mean, how long was it until you felt like you were in a flow of things?
• 35:44
  SPEAKER_02: Because I mean, from the start to where you are now, it must be worlds apart when you're changing your bag.
• 35:49
  SPEAKER_02: I mean, are you on autopilot these days?
• 35:52
  SPEAKER_03: Yeah, I mean, now I could I could literally do it with my eyes kind of shut and have you tried that?
• 35:58
  SPEAKER_02: I I I haven't.
• 36:00
  SPEAKER_03: It might be a new it might be a new thing for uh put a blindfold on and have a go.
• 36:07
  SPEAKER_01: Since your stoma formation in 2016, you've had another four surgeries.
• 36:12
  SPEAKER_03: Yeah, yeah.
• 36:13
  SPEAKER_01: Uh how have you managed because you had a resection which led to intensive care due to sepsis in 2018.
• 36:22
  SPEAKER_01: 2020 you underwent another resection and your um laparotomy line wouldn't heal.
• 36:29
  SPEAKER_04: Yeah.
• 36:30
  SPEAKER_01: So you was having that packed for months, and then you had proctectomy surgery, which led and a hernia repair, which led to sepsis again, and having to have a drain fitted and infection cleaning.
• 36:42
  SPEAKER_01: And then in October of 2023 and yeah, so August to September and October of 2023, more in more infection spikes, a sepsis infection collection in your grain, how the hell have you managed?
• 36:56
  SPEAKER_01: Because that is that is a lot to put a person through.
• 36:59
  SPEAKER_03: Yeah, I I think you know the first go going back to the first sepsis issue uh and the intensive care, I I mean I can I can remember that to the to the day, to the point.
• 37:14
  SPEAKER_03: And um it's one of the things that I've probably struggled with the most because I know at that point, I know 100% I was on my way out.
• 37:27
  SPEAKER_03: And the reason I say that is I I remember speaking, shouting the doctor, remember the junior doctor's name, David, shouted him, I said, There's something wrong, there's something wrong.
• 37:40
  SPEAKER_03: Um, and they came over to me, put the stethoscope on my back, and that is the last I remember.
• 37:47
  SPEAKER_03: I can remember seeing, and it's funny to say, but clearly we all get we've all had them points where we say we've seen the light at the end of the tunnel.
• 37:58
  SPEAKER_04: Yes.
• 37:59
  SPEAKER_03: I can still see that light, I can see the curtains drawn and the light shining through the middle of it, and I was shouting my daughter's name, and I can still see and hear it to this day, and I've struggled to get over that quite a lot.
• 38:19
  SPEAKER_03: Um, and when I come round, you know, and back onto the ward, um, I remember my my mum and dad had been called, Jen had been called to the hospital.
• 38:30
  SPEAKER_03: Um the guys opposite me said, Wow, you've scared us.
• 38:36
  SPEAKER_03: Even even the surgeon, he says you you've put a fright up us.
• 38:40
  SPEAKER_03: And that's the one there that's really kind of affected me, probably the most mentally.
• 38:47
  SPEAKER_03: Um, because I I feel or I felt that I was I was a goner at that point.
• 38:54
  SPEAKER_00: Was you on a ventilator at that point?
• 38:56
  SPEAKER_03: Yeah, I mean I I woke up and I had literally tubes out of everything.
• 39:02
  SPEAKER_03: And when I say tubes, not just a little mask, I mean big, yeah, hefty tubes, and you know, you can literally it's silent, but you can hear these machines pumping.
• 39:14
  SPEAKER_01: The thing is with sepsis, you get a fight or flight.
• 39:19
  SPEAKER_01: And a lot of people choose flight instead of flight.
• 39:23
  SPEAKER_01: Um, because when you when you're septic, because your brain and your body can't quite comprehend what's happening, they put you into an induced coma.
• 39:33
  SPEAKER_01: You don't have a choice, it's an induced coma because your body needs time to heal without your brain and without you actually being aware of what's going on because it's too much for your brain and for your body to handle.
• 39:46
  SPEAKER_01: And when I was septic, they were pinning me down trying to get a breathing tube down the throat, and I was fighting the sedation because I had Maisie.
• 39:56
  SPEAKER_01: And like you said, men uh they give you a session of counselling after you've been on life support, and that is all they give you.
• 40:08
  SPEAKER_01: Did you get that the same or did you get anything?
• 40:11
  SPEAKER_03: No, I mean I I've literally spoke to no one about this, and you know, a lot of people have said I think you probably need to just air that um because it still does affect me a little bit.
• 40:29
  SPEAKER_03: You know, I I I remember my parents being there, and I just I can't do this anymore.
• 40:35
  SPEAKER_03: And you know, my my mum was in me, you can, you've been through enough so far, and and again, you know, with this that same conversation was had in uh last year, you know, I got the sepsis the second time after the proctode uh collectomy.
• 40:50
  SPEAKER_03: And um I I remember not feeling well, um, and I thought I I've felt this before.
• 40:58
  SPEAKER_03: I I know I know what this is.
• 41:00
  SPEAKER_03: Told them, they'd done a scan and they said uh we're taking surgery now.
• 41:04
  SPEAKER_03: We need to fit this drain, and where they'd sewn the back end up, they put a drain back in there to clear, they cleaned it all out, obviously, and then shoved a drain or placed a drain.
• 41:18
  SPEAKER_03: Placed a drain.
• 41:19
  SPEAKER_03: I'm sure it was shoved.
• 41:21
  SPEAKER_03: Um, this guy's been here so many times.
• 41:25
  SPEAKER_03: Um but placed placed it uh placed it, you know, where where it had all been sewn up, and then that was in then for you know, around probably six weeks um after after the surgery.
• 41:39
  SPEAKER_01: That is not a nice place to have a train.
• 41:41
  SPEAKER_03: You know, you you literally you're struggling to sit anyway.
• 41:45
  SPEAKER_03: Um it's you weren't in work, were you?
• 41:47
  SPEAKER_03: No, no, no, no.
• 41:49
  SPEAKER_02: I was waiting for you to go, yeah.
• 41:51
  SPEAKER_03: I I mean they were they were fantastic about this.
• 41:54
  SPEAKER_03: I mean, I I'd moved jobs a couple of times since you know the customer facing.
• 42:00
  SPEAKER_03: Um and you know, I had a great manager, and you know, she completely understood, supported anything I needed.
• 42:09
  SPEAKER_03: Um, and you know, that is the kind of support that you need from your manager, you know.
• 42:17
  SPEAKER_03: I I've been a manager, you know, I'm a manager now, and you know, that's how people need to be treated with respect and kind of an understanding.
• 42:30
  SPEAKER_01: I mean, how have you managed with your mental health?
• 42:32
  SPEAKER_01: Because the problem that you've got, when you're when you're a septic, you know you're dying.
• 42:37
  SPEAKER_01: Yeah.
• 42:38
  SPEAKER_01: It's it is the strangest feeling that you will ever feel in your life, but you know you're dying.
• 42:42
  SPEAKER_01: You can feel you you feel like death.
• 42:45
  SPEAKER_01: You you literally feel like if I close my eyes now, that's it, I'm yeah, I'm I'm done.
• 42:50
  SPEAKER_01: And the problem that you've got, the more the more times that you have sepsis, the harder it is for your body to fight it every time.
• 42:58
  SPEAKER_01: I mean, I've got issues now.
• 43:00
  SPEAKER_01: I mean, I'm I'm 39 this year.
• 43:02
  SPEAKER_01: I'm facing another surgery where I know I could possibly go septic again because of what I've got to go through.
• 43:08
  SPEAKER_01: And I'm absolutely petrified because my blood pressure's very, very low.
• 43:13
  SPEAKER_01: It doesn't matter even if I'm really, really ill.
• 43:16
  SPEAKER_01: My blood, my blood pressure is still something like 90 over 70.
• 43:20
  SPEAKER_01: That's proper low.
• 43:22
  SPEAKER_01: It's the same with my temperature.
• 43:23
  SPEAKER_01: My e even though I've got an infection, my temperature is still not spiking.
• 43:28
  SPEAKER_01: It takes ages with when I'm septic for it to notice in my blood.
• 43:33
  SPEAKER_01: They don't start getting it until it starts jumping to the twos, the threes, and the four hundreds.
• 43:37
  SPEAKER_01: The more you have sepsis, the harder it is to fight it.
• 43:40
  SPEAKER_01: And the impact on your mental health, if you know you're feeling ill again and having to go back into hospital, you're reluctant to do it because you don't want to put yourself through that.
• 43:51
  SPEAKER_01: But how do you manage it with your mental health?
• 43:54
  SPEAKER_01: And it right so it's fight or flight, but with your mental health and especially.
• 44:00
  SPEAKER_01: Like being that ill, there are times when you think, How can I do this again?
• 44:04
  SPEAKER_02: How how do I what's kept you what's kept you going?
• 44:08
  SPEAKER_02: Because you you've been battling this for si what sixteen years now, at least.
• 44:14
  SPEAKER_02: How how do you I mean you s like the the Kev we met at the get together?
• 44:19
  SPEAKER_02: You're very warm, very friendly, easy to talk to.
• 44:23
  SPEAKER_02: You don't seem to carry it as you are now, but obviously you must do mentally.
• 44:29
  SPEAKER_02: How do you keep going?
• 44:30
  SPEAKER_03: I I I think someone someone nailed it um a a few years back.
• 44:35
  SPEAKER_03: Um I shared my story uh at a previous employer I worked at, and you know, I w I work in HR people teams, um, I was an engagement manager at the time, so you know, all that great stuff that you know goes on at work, all them experience kind of stuff.
• 44:54
  SPEAKER_03: And you know, I wanted to try and get people to share their stories, so I thought, right, I'll kick this off.
• 44:59
  SPEAKER_03: And people in the business said to me, you would never have known.
• 45:04
  SPEAKER_02: Yeah, I can believe it.
• 45:05
  SPEAKER_03: And they said you do a very good job of hiding it, and I think that's the problem.
• 45:13
  SPEAKER_03: I hide a lot of what I go through because I don't want to be the burden on somebody.
• 45:19
  SPEAKER_03: Yeah, I don't want to be the burden on my wife, or I don't want my kids to see any more of what they've already had to see.
• 45:27
  SPEAKER_03: You know, they've been there and they've seen me with all the staples, and you know, they, you know, we've played it up, it's a shark attack, and you know, I've dad's been on the beach and you know, giving it the bravado, but really we know what it is.
• 45:41
  SPEAKER_03: And I've you know, I I have hid a lot of it.
• 45:48
  SPEAKER_03: You know, I I don't necessarily I I don't speak to people about it.
• 45:54
  SPEAKER_03: I I I don't, you know, this is probably today, you know, the first time I've probably opened up quite a bit about it.
• 46:03
  SPEAKER_00: I mean what sorry, why don't it's hard sorry It's making me crazy.
• 46:08
  SPEAKER_02: I just can't believe how much you've been through, Kev, and you're you're just look and look at you like and the way you would you carried yourself in that get together and you must have found a lot of things triggering.
• 46:19
  SPEAKER_03: Yeah, I mean I That must have been hard.
• 46:21
  SPEAKER_03: Yeah, I I mean listening to what was the 16 around approximately sixteen of us all talking about journeys and you know I I I wanted to do this for me because I've held so much back and hid so much from people, not because I don't want them to know, just because what why should I share it?
• 46:45
  SPEAKER_03: But then I also think, you know, I l as I lay last year in and this all came from last year, you know, I had that Proctocollectomy done and I thought I'd I'd again sepsis and I told my mum again I can't do it, and she went, get a grip, Kevin, sort yourself out, you know, as mums do.
• 47:03
  SPEAKER_03: And and I thought I there's there's n for me there's no one I can reach out to.
• 47:11
  SPEAKER_03: What if someone else is feeling like this and I can give them that avenue to be able to reach out?
• 47:18
  SPEAKER_03: And I guess that's why I wanted to do this, and I wanted to, you know, do the social media sides, but you know, in my role, you know, I I I'm a global people experience manager, you know.
• 47:34
  SPEAKER_03: I I ensure people have great experiences from that onboarding to exit in their job.
• 47:42
  SPEAKER_03: We I'm you know, I look after their well being.
• 47:47
  SPEAKER_03: How can I sit here and look after their wellbeing if I'm not looking after my own?
• 47:52
  SPEAKER_03: How can I expect them to share their story if I don't share my own?
• 47:57
  SPEAKER_01: Because we're old school and it was what we was taught to do.
• 48:01
  SPEAKER_03: Yeah, and whether that's right or whether that's you know wrong, you know, that's only the individual will know that.
• 48:08
  SPEAKER_03: But for me, you know, I I very resilient, as you said, 100%, you know.
• 48:16
  SPEAKER_03: We're 2023 before my Proptocolomy, I ran the London Marathon and I was adamant whether I crawl it, um, you know, whatever I do, I'm gonna get to the end of it.
• 48:29
  SPEAKER_03: I didn't want anyone with me.
• 48:31
  SPEAKER_03: My my wife was gonna come, my kids were gonna go.
• 48:34
  SPEAKER_03: I don't want anybody there, I just want to do this on my own.
• 48:37
  SPEAKER_03: And I remember I'm gonna tear up now.
• 48:39
  SPEAKER_03: I remember my wife um calling me and I said, Stop calling me.
• 48:45
  SPEAKER_03: I said, and I just started bawling.
• 48:47
  SPEAKER_03: I'm not gonna start bawling now, but I just started bawling and I was like, I just need to do this, I just need to do it on my own, and it was my point of saying, uh, you can do it.
• 49:00
  SPEAKER_03: And even if you have got Crohn's and you've been through all these things, being resilient is the biggest thing, you know, that you can give anybody or anyone could take on from these conversations.
• 49:14
  SPEAKER_03: Being resilient is the biggest, best thing that you could kind of harness and drive through because that's what got me through that marathon.
• 49:22
  SPEAKER_03: You know, I was thinking about all the times I've laid there, and I was thinking about my kids, and I was like, I'm gonna get that medal, I'm gonna show the kids.
• 49:30
  SPEAKER_03: And in my office, it sits there above looking back at me every single day as a reminder to say, you did it.
• 49:38
  SPEAKER_02: How did you how did you feel at the end of that race?
• 49:42
  SPEAKER_03: Exhausted.
• 49:43
  SPEAKER_02: Could you walk?
• 49:44
  SPEAKER_02: Could you I've only done a half marathon, so I can't relate, but it was interesting.
• 49:48
  SPEAKER_03: I could walk, and and weirdly, I never trained for it.
• 49:52
  SPEAKER_03: So it and no one will believe this.
• 49:54
  SPEAKER_03: So in Were you running at all?
• 49:57
  SPEAKER_03: Um in the February I ran a half marathon.
• 50:00
  SPEAKER_03: In the sun on the Sunday before the London marathon, I ran 10 miles, and then the the marathon day I ran the full 26 miles.
• 50:09
  SPEAKER_02: Do you mind me asking your time?
• 50:10
  SPEAKER_03: Oh, it's five and a half hours.
• 50:12
  SPEAKER_03: I still shuffle footed halfway round.
• 50:16
  SPEAKER_03: I was styling it out to the music.
• 50:18
  SPEAKER_03: So as the music was coming along, I was it was a bit of a dance.
• 50:22
  SPEAKER_03: Um, but you know, that's I I guess it's felt like an achievement.
• 50:27
  SPEAKER_03: It's that achievement.
• 50:28
  SPEAKER_03: And I think, you know, with with work as well, I I see my career as being my achievement, and you know, I want my kids to do really well, I want them to look up and go, wow, dad had all these things go on, but he was still able to achieve X, Y, and Z.
• 50:47
  SPEAKER_03: And I think for me, all I want to do is achieve the best or be the best that I can be, and you know, I've got a great career and an opportunity that I'm in now, and I'm gonna push and push on that.
• 51:00
  SPEAKER_03: Um but for anyone else, you know, it it really is about kind of finding out what that one thing is, um, and and really pushing on with it.
• 51:13
  SPEAKER_03: But that said, I I feel you know, I I do need to probably open up more.
• 51:20
  SPEAKER_03: I I you know I and probably need to.
• 51:23
  SPEAKER_02: Is that why you started the social media then?
• 51:26
  SPEAKER_03: 100%.
• 51:27
  SPEAKER_03: Yeah, that was that was my that is why I've done all this.
• 51:30
  SPEAKER_03: You know, that's why I came to that and and I felt really out of my comfort zone because you know, you've got all you guys that have been together, some of them, two, three years.
• 51:42
  SPEAKER_03: Um, you've got this new face bowl up, and you know, I'm like, I'm on my crutches, you know, at the at the time.
• 51:50
  SPEAKER_03: You were just styling.
• 51:51
  SPEAKER_03: Cobbled, hobbled in.
• 51:52
  SPEAKER_01: I remember we were in the car and I had your shirt, and you was like, Oh, are you sure?
• 51:56
  SPEAKER_01: And I'm like, honestly, I don't mind.
• 51:57
  SPEAKER_01: I'm like trying to get the doors so your summer can get through on your buttons.
• 52:01
  SPEAKER_03: Yeah, I um and and you know, from that, um, from lying, sorry, in in in that bed in, you know, last set last July, August when I had the Proctocollectomy done, was you know, you know, if I can share a little bit of what I've been through and I I'm getting there with it, you know, it it's did I ever think I would put on social media a picture of my top half of my body with my stomo out?
• 52:30
  SPEAKER_03: Never in a million years.
• 52:32
  SPEAKER_03: But you know, for me, that is one thing that I can say I've done and feel proud of that.
• 52:38
  SPEAKER_03: Yeah, so you should.
• 52:39
  SPEAKER_03: Whether anyone agrees or not, but that's a goal for me.
• 52:43
  SPEAKER_02: There needs to be more men.
• 52:44
  SPEAKER_02: Yeah.
• 52:46
  SPEAKER_02: It's uh a lot of people have been sharing that lately, haven't they?
• 52:49
  SPEAKER_02: The lack of male representatives in the community, and you're definitely one people should we sh that people should be following.
• 52:57
  SPEAKER_03: Thank you, thank you.
• 52:58
  SPEAKER_01: So, I mean, what advice would you give to other ostomates that may be facing stoma surgery?
• 53:06
  SPEAKER_03: Um I I think for me is uh as I did, you know, do that kind of um investigation kind of information, find out what works best for you, you know.
• 53:18
  SPEAKER_03: As I said, you know, I'd used fake stoma, I'd spoke um to my stoma nurses, reach out to other individuals that have it, you know.
• 53:28
  SPEAKER_03: That was one of the things that I didn't do, but I wish I probably had have done.
• 53:34
  SPEAKER_03: Because whether it is male or female, it it doesn't matter, you know, we should be able to ask that question.
• 53:42
  SPEAKER_03: Um, and really just for me now is really just embrace.
• 53:47
  SPEAKER_03: You know, this this has helped me.
• 53:51
  SPEAKER_03: Um it's got me through to where I am now, you know.
• 53:55
  SPEAKER_03: I have a great family, I have a great career.
• 53:59
  SPEAKER_03: Um, and you know, just going through day by day, managing, seeing what other challenges it throws up.
• 54:07
  SPEAKER_03: As we know, it throws up many challenges.
• 54:09
  SPEAKER_03: Um, but just embracing life in general and just getting on with what we do best.
• 54:17
  SPEAKER_02: Well, thank you so much for coming on, and we we really appreciate you sharing what you haven't done so much before.
• 54:25
  SPEAKER_02: And I do think a lot of men are gonna really take something from this episode.
• 54:29
  SPEAKER_02: So thank you so much for sharing.
• 54:31
  SPEAKER_03: Thank you, I hope so.
• 54:31
  SPEAKER_03: Thank you.
• 54:32
  SPEAKER_02: It is an honour to hear you talk that venerable and really sharing that personal stuff.
• 54:37
  SPEAKER_02: So thank you.
• 54:38
  SPEAKER_02: Thank you.
• 54:39
  SPEAKER_02: Um, so thank you to everyone who's listened to this episode of Beyond the Pouch.
• 54:43
  SPEAKER_02: Make sure you subscribe to our channel so you can get information on future episodes, and we hope to see you again next time.
• 54:49
  SPEAKER_02: Thank you.