Latest / Beyond the Pouch / E10: Chris Opens Up About Mental Health & Relationships With A Stoma

Transcript

E10: Chris Opens Up About Mental Health & Relationships With A Stoma · Beyond the Pouch

• 0:00
  SPEAKER_02: 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.
• 0:20
  SPEAKER_04: Welcome back for another episode of Beyond the Pouch.
• 0:22
  SPEAKER_04: If you didn't already know, this is a visual podcast.
• 0:24
  SPEAKER_04: So if you head over to Pelican's YouTube channel, you can watch the full episode there.
• 0:29
  SPEAKER_04: Today we are welcomed by our fellow ambassador Chris, who's going to share with us his experience of having a stoma and his mental health struggles.
• 0:37
  SPEAKER_04: So, Chris, hello.
• 0:38
  SPEAKER_00: Good morning.
• 0:38
  SPEAKER_00: How are you?
• 0:39
  SPEAKER_04: We are good.
• 0:40
  SPEAKER_04: How are you?
• 0:40
  SPEAKER_00: Very well, thank you.
• 0:41
  SPEAKER_04: It's been a while since we've seen you.
• 0:43
  SPEAKER_00: It's been a long while.
• 0:44
  SPEAKER_03: Long while.
• 0:44
  SPEAKER_03: A lot's changed for a lot of us.
• 0:46
  SPEAKER_00: Indeed.
• 0:47
  SPEAKER_03: It has been over a year, hasn't it?
• 0:49
  SPEAKER_03: I was just trying to remember.
• 0:52
  SPEAKER_00: It was the last get together.
• 0:53
  SPEAKER_03: So was it last February?
• 0:54
  SPEAKER_00: Yes, it's almost a year.
• 0:55
  SPEAKER_03: Yeah, almost almost a year.
• 0:57
  SPEAKER_03: It wasn't February, was it?
• 0:58
  SPEAKER_00: It was February.
• 0:59
  SPEAKER_00: Yeah, the get together was February.
• 1:00
  SPEAKER_00: Yeah.
• 1:01
  SPEAKER_03: I thought it was March.
• 1:02
  SPEAKER_03: My brain's not working.
• 1:04
  SPEAKER_04: But um, yeah, so we we've known each other doing ambassador work for a couple of years now, I guess.
• 1:12
  SPEAKER_04: So we know your story, but for the the great British public and beyond, can you yes, so why have you got a stoma?
• 1:19
  SPEAKER_00: So I've got Crohn's disease.
• 1:21
  SPEAKER_00: Uh I believe I've had Crohn's disease since I was a child, but I was never diagnosed.
• 1:26
  SPEAKER_00: Yeah, I always had loads of problems, loads of symptoms, always ill, constantly having issues.
• 1:32
  SPEAKER_00: And then throughout being an adult, it was the same thing.
• 1:34
  SPEAKER_00: I kept being really ill, kept going to the hospital, kept going to the doctors, but it wasn't until 2012 I was finally diagnosed with Crohn's disease.
• 1:42
  SPEAKER_00: So I went a long, long time with some horrendous suffering that you know my wife Rachel, she's had to go through it with me and without any answers.
• 1:52
  SPEAKER_00: So once we got to 2012 and we finally got an answer, it was such a relief to be told, actually to be told you've got Crohn's disease.
• 1:58
  SPEAKER_00: That was a relief to hear it because finally I could think, okay, good, I now know what's wrong with me, we can move forward.
• 2:06
  SPEAKER_00: But then it just carried on getting worse, and I was just plagued with um fistulas, perianal abscesses.
• 2:14
  SPEAKER_00: Uh it was just horrendous.
• 2:15
  SPEAKER_00: I was going into the hospital four or five times a year to have those cut open, drained, and it I just lost loads of weight.
• 2:22
  SPEAKER_00: It it was just horrendous, and I kind of lost pretty much most of my bowel function.
• 2:27
  SPEAKER_00: So trying to work with no bowel function was a real nightmare.
• 2:30
  SPEAKER_00: Uh trying to do the job that I do, trying to work with that was just awful.
• 2:35
  SPEAKER_00: So in the end, I just couldn't take any more.
• 2:37
  SPEAKER_00: And I just said to my surgeon, enough's enough.
• 2:40
  SPEAKER_00: Just take it out, just get rid of it, give me a colostomy, give me a Barbie butt, let's have done with it.
• 2:46
  SPEAKER_00: And that was a game changer.
• 2:49
  SPEAKER_00: That changed my life.
• 2:50
  SPEAKER_00: And here I am today talking about it.
• 2:53
  SPEAKER_00: But that was amazing.
• 2:54
  SPEAKER_00: I just got my life back, is what I call it.
• 2:56
  SPEAKER_00: I got my life back when I had my stoma.
• 2:59
  SPEAKER_03: I mean, it is draining with see with there's so many different types of Crohn's disease, and uh per perennial or perianal Crohn's disease has got to be one of the one of the the worst and the most draining because even when your cro even if your Crohn's isn't flowing up, you can still get abscesses and you start to develop in a fever, you're borderline septic, you go into hospital, but then you're in hospital for two weeks, maybe three weeks, because even though that even though they know it's an abscess, they need to work out a game plan on how they're gonna drain the abscess and what they're gonna do.
• 3:38
  SPEAKER_03: So you spend the kind of the first week in hospital kind of getting worse before you get better.
• 3:43
  SPEAKER_03: How have you found that?
• 3:44
  SPEAKER_00: Uh well it got to the point where I was almost getting used to having abscesses, which you no one should ever get used to that, because it's the most barbaric pain in the world.
• 3:53
  SPEAKER_00: Having those abscesses in your bottom, it's just barbaric.
• 3:56
  SPEAKER_00: And most of the time, all of mine were generally cut open, they'd get rid of all the whatever's in an abscess.
• 4:03
  SPEAKER_00: Uh, some I'd burst without even being in hospital.
• 4:06
  SPEAKER_00: I could just and the smell is awful.
• 4:08
  SPEAKER_00: A burst abscess, just the stench is awful.
• 4:12
  SPEAKER_00: But most of the time they cut them out and they'd leave them blade open, so then I'd go home with this open wound right next to where your bottom hole is.
• 4:19
  SPEAKER_00: So then when you go to the toilet, who's then going in the the bit that they've cut out, so you're constantly having to sort of soak it in the bath, put your fingers in there to kind of clear it all out, and that was just going on one after the other after the other.
• 4:32
  SPEAKER_00: But I kind of got used to it, which is just a bit of a strange thing to say that I I got used to it, but I never got used to the pain.
• 4:39
  SPEAKER_00: That pain was just horrific.
• 4:41
  SPEAKER_00: So it got to the point where I always when I went into the hospital, I told the people in AE what they needed to do, because so many don't.
• 4:49
  SPEAKER_00: Because they just look at it and say, Oh, we'll give you some antibiotics.
• 4:52
  SPEAKER_00: You're like, this is way too big for antibiotics, and they'd be like, No, you need to take antibiotics, go home.
• 4:58
  SPEAKER_00: I'm not going home.
• 4:59
  SPEAKER_00: You need to take me into the theatre, cut it out, drain it, pack it, or leave it laid open and then send me home.
• 5:05
  SPEAKER_03: I mean, it is difficult because most of them in AE don't even know what a fistula is because when when my fistula developed, it came up through my belly button.
• 5:13
  SPEAKER_03: And they're going to me, oh, your belly button's infected, your piercings infected.
• 5:17
  SPEAKER_03: No, it's not.
• 5:18
  SPEAKER_03: I've had that piercing like four years.
• 5:20
  SPEAKER_03: It's not the piercing, it's the thing that's underneath it.
• 5:23
  SPEAKER_03: And they just give you antibiotics and send you home.
• 5:25
  SPEAKER_03: It's just it's just a little bit.
• 5:27
  SPEAKER_00: I mean, the the fistlers that I had, my my surgeon, once she did the colostomy surgery, she said to me, She said, That's the best decision you've ever made.
• 5:36
  SPEAKER_00: She's having the colostomy.
• 5:38
  SPEAKER_00: She said, Because your fistulas, she said, We were never going to heal those.
• 5:41
  SPEAKER_00: She said, I've tracked them all for opening you up.
• 5:44
  SPEAKER_00: And she said, They were just going so far and so deep.
• 5:47
  SPEAKER_00: She's like, That's the best decision you've made.
• 5:49
  SPEAKER_00: We've now got it all out.
• 5:50
  SPEAKER_00: She said, There was no way we're ever going to heal those.
• 5:53
  SPEAKER_00: You would have just suffered basically forever.
• 5:55
  SPEAKER_04: Did you get offered stoma surgery then before you decided to say no?
• 6:00
  SPEAKER_00: No, interestingly, I didn't.
• 6:02
  SPEAKER_00: Um, so I had uh a few years before the sort of the fishlers and the abscesses really started, I did I did have the terminoline section, resection.
• 6:12
  SPEAKER_00: And I thought then I was gonna wake up with one because they marked me up for one.
• 6:16
  SPEAKER_00: And at that moment in time, I was never ready for a colostomy.
• 6:20
  SPEAKER_00: And when they said, Yeah, we're gonna take this bit of your intestine out, but you could wake up with a bag, I was like, Well, that that just sounds horrendous.
• 6:27
  SPEAKER_00: Because at that moment, I was I'd never even thought of a bag.
• 6:30
  SPEAKER_00: So then they were marking me up for one.
• 6:31
  SPEAKER_00: So when I came around from surgery, just put my hand down to see if I had one.
• 6:35
  SPEAKER_00: I was like, Oh, I haven't got one.
• 6:38
  SPEAKER_00: Um, but then as time went on and I was struggling, I that's it was me that started looking into having a stoma.
• 6:44
  SPEAKER_00: It was never really discussed.
• 6:46
  SPEAKER_00: My surgeon, I don't think, ever discussed it with him.
• 6:49
  SPEAKER_04: That's mind-blowing, isn't it?
• 6:50
  SPEAKER_00: Yeah, I just I can't recall ever having a conversation where they said, Would you consider it or would you like one?
• 6:57
  SPEAKER_00: It was me that did that.
• 6:58
  SPEAKER_00: I went around and did all the research, watching YouTube videos, listening to things on social media, and eventually I just thought that just seems to be my answer.
• 7:08
  SPEAKER_04: It it sounds like you're a good advocate for yourself and that you've you've had to speak up and fight for what you need.
• 7:14
  SPEAKER_00: I haven't I learnt to do that because I was quite bad at doing that.
• 7:19
  SPEAKER_00: I'd I'd quite often be the almost like the model patient in the hospital where I'd just do as I'm told.
• 7:25
  SPEAKER_00: Yeah, so okay, that's what you want me to do, I'll do that.
• 7:28
  SPEAKER_00: And then through support with my wife Rachel, she would start speaking for me because she could see how bad I was, because I couldn't do it.
• 7:37
  SPEAKER_00: So then in time I learnt to do it.
• 7:39
  SPEAKER_00: I I got a lot better at it.
• 7:41
  SPEAKER_00: But because I always have brain fog and memory issues, I can't always remember what they tell me.
• 7:46
  SPEAKER_00: I hear them, but and so I generally have to take Rachel to most of my hospital appointments as my note keeper, if you like.
• 7:53
  SPEAKER_00: Because I walk out of the room and it's gone.
• 7:55
  SPEAKER_00: I'm like, I've I've completely forgotten everything you've told me.
• 7:58
  SPEAKER_03: Yeah, the the problem that you've got with with Crohn's disease, surgery is typically a last resort because uh of how Crohn's disease acts, and especially if you're suffering with lots of abscesses and you've got fistulas tracking off everywhere, going in to do surgery can actually cause more harm than good because you're always advised after having stoma surgery, especially with Crohn's disease, that within the first year you could develop a fistula in or around your stoma site because they've gone in, they've opened you up.
• 8:35
  SPEAKER_03: It's a trauma to the bowel.
• 8:37
  SPEAKER_03: So sometimes the bowel likes to go, I know what I'm gonna do.
• 8:40
  SPEAKER_03: I'm going to make a little tunnel.
• 8:42
  SPEAKER_03: Um so ulcerative colitis, because it's a case of whipping out the large bowel and giving somebody a stoma, most surgeons with ulcerative colitis are like, that's fine, we'll give you stoma surgery.
• 8:56
  SPEAKER_03: With whereas with Crohn's disease, because it's a lot more, uh it's a bit more complex, the surgery isn't offered unless you've tried absolutely everything.
• 9:06
  SPEAKER_04: Well, it sounds like you were relentless and you had experienced everything.
• 9:11
  SPEAKER_04: It got to the point where you had no choice anymore.
• 9:13
  SPEAKER_00: Yeah, it was it did get to that point where I just thought, I've I have got no choice.
• 9:16
  SPEAKER_00: I was on biological drugs for about seven, eight years, going into hospital every eight weeks, having infliximab.
• 9:22
  SPEAKER_00: Then we tried another one, Vito Lision Mab, and then another type of MAB, and then I was injecting at home, and none of that was working.
• 9:28
  SPEAKER_00: And but then they were still wanting me to do that after I had stoma surgery.
• 9:32
  SPEAKER_00: And I was like, why?
• 9:33
  SPEAKER_00: I'm I'm coming, I I made the choice to come off all medication in the end.
• 9:37
  SPEAKER_00: But they I'd probably still be on medication if they had their way.
• 9:40
  SPEAKER_00: So I said no.
• 9:42
  SPEAKER_04: Your so your job is a police officer?
• 9:44
  SPEAKER_00: Yes.
• 9:45
  SPEAKER_04: So how on earth did you navigate that with all that you were going?
• 9:50
  SPEAKER_04: I mean, how how long had you been in that role before you had stoma surgery and you were dealing with all of that?
• 9:56
  SPEAKER_00: So I joined I joined the police in 2010.
• 10:01
  SPEAKER_00: So I was diagnosed in 2012.
• 10:03
  SPEAKER_00: So I'd been a couple of years as a cop.
• 10:07
  SPEAKER_00: But then it got worse and worse.
• 10:08
  SPEAKER_00: I was at work in terrible ways.
• 10:12
  SPEAKER_00: Uh that I collapsed at work numerous times.
• 10:15
  SPEAKER_00: I lost so much weight, I look like a skeleton.
• 10:18
  SPEAKER_00: You know, I'm not big now anyway.
• 10:20
  SPEAKER_00: So for me to lose weight, it it becomes quite quite obvious.
• 10:25
  SPEAKER_00: My uniform didn't fit very well.
• 10:27
  SPEAKER_00: I was just a mess, really.
• 10:30
  SPEAKER_00: And I I quite often collapsed at work.
• 10:33
  SPEAKER_00: And my sergeant at the time used to have to blue light me to hospital.
• 10:36
  SPEAKER_00: They'd scoop me up and put me in a police car and just blue light me to hospital.
• 10:40
  SPEAKER_00: But I kept going in, I I'd very stubborn.
• 10:43
  SPEAKER_00: I was like, I'm I'm gonna keep working, I'm gonna keep working.
• 10:46
  SPEAKER_00: There were times when Rachel said to me, You cannot go to work.
• 10:49
  SPEAKER_00: Look at you, you can't go to work, and I'd go because I just didn't want this.
• 10:54
  SPEAKER_00: Cool, it's got a bit emotional then.
• 10:57
  SPEAKER_00: I didn't want this to win.
• 10:59
  SPEAKER_00: So I kept forcing myself to go to work and pushing through.
• 11:02
  SPEAKER_00: But it was awful, and I was wearing adult nappies because I had no control in my bowels.
• 11:07
  SPEAKER_00: And when you're a police officer and you're in someone's house, a victim of crime, and you're like, I'm really sorry, I need to go.
• 11:13
  SPEAKER_00: You can't tell them why.
• 11:15
  SPEAKER_00: You can't, I've just had a poo.
• 11:17
  SPEAKER_00: You can't say that to a victim.
• 11:20
  SPEAKER_00: Yeah, you know, I'm really sorry, I've something's just happened on the radio, I've got to go, I'll I'll come back, I will come back.
• 11:25
  SPEAKER_00: So I'd have to go to the police station and try and get changed and get cleaned, but I wouldn't let that victim down.
• 11:31
  SPEAKER_00: I would go back and then try and finish what I was doing.
• 11:34
  SPEAKER_00: So it was awful, and it it it affected my mental health a lot, really did.
• 11:41
  SPEAKER_00: It yeah, they were dark times where I didn't see the point sometimes.
• 11:46
  SPEAKER_00: I just thought, what's the point of this?
• 11:49
  SPEAKER_00: Why am I doing it?
• 11:51
  SPEAKER_00: It I didn't go quite dark for me at times.
• 11:56
  SPEAKER_04: Who I mean it sounds like your wife Rachel has a massive support for you there, which is you know, not not everyone has that pillar of strength at home.
• 12:04
  SPEAKER_04: Um I mean, it's we're gonna bring Rachel in in a bit so she can share her experience of dealing with it with you.
• 12:11
  SPEAKER_04: But I mean, in terms of work and did you get a lot of support at work with I mean I mean your your boss scooping you up and putting you in a car is pretty support.
• 12:20
  SPEAKER_04: That seems like they were pretty good.
• 12:22
  SPEAKER_00: Yeah, uh as a whole, my yeah, my employee's been fantastic.
• 12:27
  SPEAKER_00: That they have looked after me.
• 12:29
  SPEAKER_00: They've just done everything I've asked of them.
• 12:32
  SPEAKER_00: Yeah, uh, I had a period where I was off for nine months, and normally you get sick full sick pay for six months, then it drops to half.
• 12:39
  SPEAKER_00: They never halved it, they just carried it on with full.
• 12:42
  SPEAKER_00: So to take that away, they sent sent us a check for a few hundred quid to help with parking fees at hospitals and child care.
• 12:51
  SPEAKER_00: Um my sergeant at the time, she would come and do a home visit, and it never felt like it was a home visit to to be nosy or sif, yeah.
• 12:58
  SPEAKER_00: You're telling the truth, it was always just genuine care.
• 13:02
  SPEAKER_05: Wow.
• 13:02
  SPEAKER_00: And I'd never I won't ever forgive forget that those two sergeants were like that for me.
• 13:07
  SPEAKER_00: The Darren, who used to scoop me up and take me, and then Jenny used to come and do the home visits.
• 13:12
  SPEAKER_00: And now I'm a sergeant, I try and do the same for my PCs, I try and look after them.
• 13:18
  SPEAKER_00: And I've almost become an advocate within our police force for Crohn's disease now.
• 13:21
  SPEAKER_00: So when everyone gets diagnosed with Crohn's disease, occupational health come to me and say, We've got another one.
• 13:28
  SPEAKER_05: Yeah, yeah.
• 13:28
  SPEAKER_00: Can you help us out?
• 13:29
  SPEAKER_00: Yeah.
• 13:30
  SPEAKER_00: So yeah, so much is good has come, but there were some really horrible dark times.
• 13:35
  SPEAKER_05: Yeah.
• 13:35
  SPEAKER_00: And you know, from having stoma surgery to then think, I've got a YouTube channel, I do social media, I'm sitting here with you guys.
• 13:42
  SPEAKER_04: You do so you do so much.
• 13:44
  SPEAKER_00: All because I've got a stoma.
• 13:46
  SPEAKER_00: I never thought this would happen.
• 13:47
  SPEAKER_00: So for me, this is an absolute positive.
• 13:49
  SPEAKER_00: It changed my life in so many ways.
• 13:51
  SPEAKER_00: Yeah, but yeah, they're absolutely there were some horrendously dark times.
• 13:55
  SPEAKER_00: And Rachel got if it wasn't for Rachel, I probably wouldn't be here.
• 13:59
  SPEAKER_04: Oh, Rachel's are the best.
• 14:02
  SPEAKER_00: They are indeed.
• 14:03
  SPEAKER_03: I mean, how did you find adapting to life a colostomy?
• 14:06
  SPEAKER_03: Because not many people with Crohn's disease end up with a colostomy, it's typically an ileostomy.
• 14:11
  SPEAKER_00: Yeah.
• 14:12
  SPEAKER_00: Um it's gonna sound really weird, but I've I've loved it.
• 14:19
  SPEAKER_00: I love my stoma.
• 14:20
  SPEAKER_00: I it's just not weird, that's lush.
• 14:22
  SPEAKER_00: Yeah, you should yeah, it's one of the best things that's ever happened to me health-wise, is having the stoma because of what I got back.
• 14:30
  SPEAKER_00: Yeah, I got I got me back.
• 14:35
  SPEAKER_05: And that oh god, Chris, you're gonna really be crying.
• 14:38
  SPEAKER_05: We're all emotional.
• 14:40
  SPEAKER_05: Are we alive when the pausal my mental health got better?
• 14:44
  SPEAKER_00: Yeah, you know.
• 14:46
  SPEAKER_00: I'd say probably my relationship, my marriage probably got better.
• 14:49
  SPEAKER_00: Yeah, you know, it's it's only when you kind of sit here talking about it that you really think about it and think, yeah, actually, that's probably got better.
• 14:56
  SPEAKER_00: That's improved.
• 14:57
  SPEAKER_00: But everything improved.
• 14:59
  SPEAKER_00: You know, I ended up getting the promotion that I always wanted.
• 15:02
  SPEAKER_00: I got promoted to sergeant a few years, well about three years ago now, which I never thought I was going to achieve because of my health.
• 15:08
  SPEAKER_00: Yeah, so I've achieved that.
• 15:10
  SPEAKER_00: So I don't look at my stoma as as a negative in any way.
• 15:14
  SPEAKER_00: There's times when the bag might come off a little bit and it leaks, but they're few and far between.
• 15:19
  SPEAKER_00: I think my in six and a half years of having it, I think I've probably only had no more than six leaks anyway.
• 15:25
  SPEAKER_00: So I can deal with that when it likes to fart in a really quiet room with lots of people that don't know you've got it.
• 15:33
  SPEAKER_00: I just laugh at that.
• 15:35
  SPEAKER_00: There's there's times when I've gone red when it's happened, and I'm like, oh you've got a stoma, and then everyone's like, Oh, okay, that's fine.
• 15:42
  SPEAKER_00: Yeah, yeah.
• 15:42
  SPEAKER_03: I mean obviously you have to wear body armour and things under your uniform.
• 15:47
  SPEAKER_03: How have you?
• 15:48
  SPEAKER_03: Because I remember you telling me about that a while ago.
• 15:51
  SPEAKER_03: How have you how did you adapt that to be around your stoma?
• 15:54
  SPEAKER_00: Because obviously you have to wear those vests which Yeah, so we wear um we call it body armour.
• 15:59
  SPEAKER_00: Well, people like to call it.
• 16:01
  SPEAKER_04: It makes you sound like a terminator.
• 16:02
  SPEAKER_04: I'm not gonna do it.
• 16:02
  SPEAKER_00: Absolutely does, yeah.
• 16:03
  SPEAKER_00: Yeah, like it.
• 16:04
  SPEAKER_00: But you are, yeah.
• 16:04
  SPEAKER_00: I am a terminator.
• 16:06
  SPEAKER_00: Absolutely.
• 16:07
  SPEAKER_00: Um yeah, that's alright, the body armour.
• 16:10
  SPEAKER_00: But then there's the actual armour that goes over the stoma.
• 16:14
  SPEAKER_00: The way I got around that is I don't wear that anymore.
• 16:17
  SPEAKER_04: Well, there you go.
• 16:19
  SPEAKER_00: I don't wear it.
• 16:19
  SPEAKER_00: I just wear my normal body armour.
• 16:21
  SPEAKER_00: That covers it.
• 16:22
  SPEAKER_00: That I do.
• 16:23
  SPEAKER_00: Because that one that was specifically made, it came from America.
• 16:27
  SPEAKER_00: It was a piece of kit.
• 16:29
  SPEAKER_00: It was just too big.
• 16:30
  SPEAKER_00: And then put the body armor over the top of that, and then everything pushes and it just like.
• 16:35
  SPEAKER_04: So have you got to carry uh are you allowed to say if you carry a weapon?
• 16:39
  SPEAKER_00: Carry the weapon?
• 16:40
  SPEAKER_00: Why did you go American then?
• 16:43
  SPEAKER_04: Because you're a terminator.
• 16:44
  SPEAKER_04: I can't get it out of my head.
• 16:46
  SPEAKER_04: Do you like you know, like you must do you have a lot of weight around your waist or is that literally?
• 16:52
  SPEAKER_00: It's all I don't really.
• 16:53
  SPEAKER_00: It's all on here.
• 16:54
  SPEAKER_00: It's all mainly here.
• 16:55
  SPEAKER_00: The handcuffs are on there, the batons there, the parver spray's there somewhere.
• 17:00
  SPEAKER_00: We used to have belt kit.
• 17:02
  SPEAKER_00: Yeah.
• 17:02
  SPEAKER_00: So but we don't wear belts anymore.
• 17:04
  SPEAKER_00: We have it all on the the front of our tack vest.
• 17:06
  SPEAKER_04: I haven't really eaten up a police officer in a while.
• 17:08
  SPEAKER_04: That's probably why.
• 17:10
  SPEAKER_04: Maybe I should.
• 17:11
  SPEAKER_00: I'll bring my uniform looks like your lady is listening to.
• 17:18
  SPEAKER_03: It has to be kept your uniform.
• 17:21
  SPEAKER_03: No, the uniform.
• 17:21
  SPEAKER_03: I thought that I had to stay at the station.
• 17:23
  SPEAKER_00: No, you can take it, huh?
• 17:25
  SPEAKER_00: Oh, yeah.
• 17:27
  SPEAKER_00: Don't go there, Rachel.
• 17:30
  SPEAKER_04: Lucky Rachel.
• 17:31
  SPEAKER_04: That's all I'm saying.
• 17:34
  SPEAKER_03: Um, how did you did you get help with regards to obviously post op mental health?
• 17:41
  SPEAKER_04: Um did you get any?
• 17:43
  SPEAKER_04: Wow, that would be interesting to know, yeah.
• 17:45
  SPEAKER_00: So mental health after.
• 17:48
  SPEAKER_00: Um I was never offered any.
• 17:50
  SPEAKER_00: And I don't think anyone really spoke about mental health afterwards.
• 17:55
  SPEAKER_00: I think I think my kind of medical team, I think they just saw a happy Chris.
• 18:01
  SPEAKER_00: So they probably didn't think maybe he might need some help and support because I mean the recovery period was horrific, but that's only three months.
• 18:11
  SPEAKER_00: So yeah, I don't think my team ever saw an unhappy Chris.
• 18:15
  SPEAKER_00: So I don't think they ever felt the need to discuss it.
• 18:18
  SPEAKER_00: I don't think I've ever really had any dark times because of my stoma.
• 18:22
  SPEAKER_00: Nothing about that I've has I don't think has really affected my mental health.
• 18:27
  SPEAKER_00: I see how it does for others.
• 18:28
  SPEAKER_00: If you're going to surgery and you're not expecting it and you wake up with one, then yeah, I'd imagine that's gonna have a huge impact on people's mental healths.
• 18:37
  SPEAKER_00: But I think mine just got stronger afterwards because I could do things that I couldn't do.
• 18:44
  SPEAKER_04: Yeah.
• 18:44
  SPEAKER_00: And and that but that's what kind of pushed me to then you know, set up social media, do YouTube to help people because of how powerful it was for me having it, yeah, I could share that and teach other people.
• 18:58
  SPEAKER_00: And I really my channel was aimed at really helping people that are new to a stoma.
• 19:03
  SPEAKER_00: Or yeah, they've just woken up and they've got one, you know, and to see that you can be positive with one, you can carry on with a normal life with one.
• 19:12
  SPEAKER_00: Um I've just come out of a social media group because there's just too much negativity in it.
• 19:18
  SPEAKER_00: And I've tried to be positive and they almost outed me for being positive about I was like, there's no need for that.
• 19:25
  SPEAKER_00: So I came out of that.
• 19:26
  SPEAKER_04: I mean, you're very much a bit like Keith, who you you'll know Keith as well.
• 19:31
  SPEAKER_03: I'm really sorry, I'm really sorry to interrupt, but I'm laughing because I can hear less.
• 19:38
  SPEAKER_03: Yeah, mine has a slot for five minutes, not gonna lie.
• 19:41
  SPEAKER_00: They are a bit bubbly, aren't they?
• 19:42
  SPEAKER_00: Yeah, yeah.
• 19:42
  SPEAKER_04: That's right.
• 19:43
  SPEAKER_04: I told you it's a symphony.
• 19:44
  SPEAKER_00: My flare-ups have massively reduced uh since having a stoma.
• 19:48
  SPEAKER_00: But they do.
• 19:49
  SPEAKER_00: Yeah, it still happens.
• 19:50
  SPEAKER_00: I still I get flare-ups in what I call different ways where I get real bad bouts of fatigue and brain fog.
• 19:57
  SPEAKER_00: My memory is shocking, really shocking, to the point where I actually thought that I had early onset of dementia or Alzheimer's, and I got tested for that.
• 20:07
  SPEAKER_03: So we shouldn't laugh about that, but the the the brain fog is terrific, isn't it?
• 20:14
  SPEAKER_04: What is that?
• 20:15
  SPEAKER_04: Because like we so we don't all have the same condition, but I I suffer with that as well, big time.
• 20:20
  SPEAKER_03: It's well, you guys on the same drain.
• 20:23
  SPEAKER_03: When we were in here this morning before we started recording, everyone's talking.
• 20:27
  SPEAKER_03: I just like I'd don't ever but no, the I I think I mean have you ever noticed when you flare up, so my taste goes funny and my sense of smell, the smells I can smell when I'm flaring up compared to when I'm not.
• 20:45
  SPEAKER_00: My taste generally is okay, but smell, I do smell things differently.
• 20:50
  SPEAKER_00: And in my job that I am now, I'm a I'm a custody sergeant.
• 20:57
  SPEAKER_00: And a lot of people that come into our custody suite do smell it a little bit.
• 21:01
  SPEAKER_00: And i if I don't feel right, if I feel that I'm fatigued and a little bit struggly, the smell if seems completely amplified.
• 21:10
  SPEAKER_00: Yeah.
• 21:10
  SPEAKER_00: And I say to my colleagues, can you smell that?
• 21:12
  SPEAKER_00: That person really smells.
• 21:13
  SPEAKER_00: Oh no.
• 21:13
  SPEAKER_00: They're like, No, I can't smell anything.
• 21:15
  SPEAKER_00: It amplifies more than change.
• 21:17
  SPEAKER_00: Everything just gets amplified.
• 21:19
  SPEAKER_04: Have you had that in these podcasts as a guest ever like been like, whoa.
• 21:22
  SPEAKER_03: No, but no, I I have a real thing about smells.
• 21:27
  SPEAKER_03: So it's like every now and again, like so.
• 21:31
  SPEAKER_03: Since I started the chemical menopause, because I keep flushing, I haven't taken smoking back up full time, but I'll have maybe two cigarettes a day.
• 21:40
  SPEAKER_03: And when I get back in from having that cigarette, I have to wash my hands to spray my hair because I can smell it.
• 21:47
  SPEAKER_03: And it's it's really weird.
• 21:48
  SPEAKER_03: My my sense of smell, the things that I can smell, especially since having my stoma, it's just everything is amplified.
• 21:56
  SPEAKER_03: So I'll be going to my husband, can you smell that?
• 21:58
  SPEAKER_03: And he'd be going, I can't smell it.
• 22:00
  SPEAKER_03: And I'm going, but I can smell it.
• 22:01
  SPEAKER_03: And he's going, no, no, it's in your head.
• 22:02
  SPEAKER_03: And then a couple minutes, oh yeah, I can I can I can smell that.
• 22:06
  SPEAKER_03: And I'm just, it's just, it's, I don't know whether it's a blessing or a card.
• 22:10
  SPEAKER_00: Oh, yeah, I'm not sure.
• 22:11
  SPEAKER_00: I'll go more cursed.
• 22:12
  SPEAKER_04: Well, I mean, yeah, I'd love, I'd love to see some research done into how the brain reacts to all of this.
• 22:18
  SPEAKER_03: And, you know, like it's yeah, I mean it's just it things, it's like my taste at the moment, my taste is really muted.
• 22:25
  SPEAKER_03: So um I've gone from alcohol-based mouthwash to non-alcohol-based because I've got ulcers at the moment, so obviously alcohol-based stings.
• 22:35
  SPEAKER_03: But the taste in my mouth after using the other mouthwash is just something else, and there's nothing that can get rid of that.
• 22:41
  SPEAKER_03: You just kind of have to sleep it off over sleep it off overnight and wake up and have a cup of tea in the morning to get rid of the taste.
• 22:48
  SPEAKER_03: Yeah.
• 22:48
  SPEAKER_03: But it's it's different things, is different, different people experience different things.
• 22:53
  SPEAKER_03: But yeah, that with grown sense of smell and taste uh definitely dot to.
• 22:58
  SPEAKER_00: So yeah, in terms of flare-ups, the the most I get now is really is fatigue, and the brain fog just is worse.
• 23:05
  SPEAKER_00: I mean, I've always got brain fog, but if I'm in some sort of flare, like the fatigue and ache and joints, my joints ache, my ankles throb, my knees throb.
• 23:15
  SPEAKER_03: How do you manage that?
• 23:16
  SPEAKER_03: Because obviously you're a police officer, you're interviewing a victim of a crime.
• 23:21
  SPEAKER_03: Do you you can't sit there and go, What was I talking about?
• 23:26
  SPEAKER_00: Yeah, but that kind of does happen.
• 23:27
  SPEAKER_00: Um it does happen, but the job I'm in.
• 23:30
  SPEAKER_00: Do you style it out, or do you just you find a way?
• 23:32
  SPEAKER_04: You might I bet you people don't look at it.
• 23:34
  SPEAKER_04: Yeah, I bet people don't notice anymore.
• 23:36
  SPEAKER_00: People don't.
• 23:37
  SPEAKER_00: But the job I do now as a custody sergeant, I'm at a desk, and I love it because it's all repetition.
• 23:43
  SPEAKER_00: When I book someone into custody, it's the same question set for every single person.
• 23:48
  SPEAKER_00: Yeah, so everything is repetition.
• 23:50
  SPEAKER_00: So that definitely helps, and I I love the role because it is all repetition.
• 23:55
  SPEAKER_00: So there's so many things in my previous role that I'd forget it'd just go, just disappear, and I'd have to relearn it.
• 24:04
  SPEAKER_00: But with the role I do now, you just press next on the screen and I'll ask those questions next and ask those questions.
• 24:11
  SPEAKER_00: There are some things where I have to use my brain, but most of the time it's 90% repetition.
• 24:15
  SPEAKER_00: So that gets me through, and I love it.
• 24:17
  SPEAKER_00: I absolutely love it.
• 24:18
  SPEAKER_03: Repetitive is good because I know at the moment, so I've taken up the whole knitting thing, and because it's repetitive pattern, it's really easy for me to sit there over night time and do two hours of that, whereas trying to concentrate on the TV programme is like no.
• 24:33
  SPEAKER_00: I'll give you an idea of how my memory is or the brain fog, because it just made me think of it.
• 24:39
  SPEAKER_00: Think talking about TV.
• 24:40
  SPEAKER_00: I can go to the cinema and watch a film, I walk out and I forget it.
• 24:45
  SPEAKER_00: I can go back, I've gone see it the week later, and it'd be like seeing it for the first time again.
• 24:49
  SPEAKER_05: Wow.
• 24:50
  SPEAKER_00: It's crazy.
• 24:51
  SPEAKER_00: That's what my brain does.
• 24:53
  unknown: Wow.
• 24:54
  SPEAKER_00: Yeah.
• 24:54
  SPEAKER_03: What about you with the pregnancy brain at the moment?
• 24:56
  SPEAKER_03: Oh wow, the shot in it.
• 24:59
  SPEAKER_05: It's just shot in it.
• 25:02
  SPEAKER_03: That's a different.
• 25:03
  SPEAKER_03: I did I did it there this morning.
• 25:04
  SPEAKER_03: I walked out of the hotel room, went all the way downstairs to the desk to check out.
• 25:08
  SPEAKER_03: And as I went to give my key off, I went, it's about if I leave my suitcase here because I left my glasses up in the room.
• 25:13
  SPEAKER_04: So I'm about to go all the way back up and go get my glasses.
• 25:15
  SPEAKER_04: I had a Zoom meeting last night at 7 pm with work.
• 25:19
  SPEAKER_04: Um, and I it literally I'd put Jake in the bath and it was like, and then I suddenly thought, hmm, I feel like there's something I should be doing.
• 25:28
  SPEAKER_04: And then I looked at the clock, it was five past seven.
• 25:31
  SPEAKER_04: Then I had an email saying so-and-so is in the waiting room, and I thought, and then the other half goes, yeah, half six.
• 25:37
  SPEAKER_04: I did remember, and then I thought I should remind you, but then I thought you'd remember.
• 25:40
  SPEAKER_04: I thought, what?
• 25:41
  SPEAKER_04: And I was like, from now on, anything that's a commitment to other people, you're gonna have to start reminding me because I just cannot.
• 25:48
  SPEAKER_03: Yeah.
• 25:49
  SPEAKER_03: I mean, how do you deal with so obviously with the flare-ups, being a police officer, having to wear a heavy uniform even though you're sitting at a custody desk?
• 25:57
  SPEAKER_03: How do you deal with the aches and pains?
• 26:00
  SPEAKER_03: Because I know obviously, like flaring up with my arthritis, which is Crohn's related, it's it's never fun, and trying to deal and kind of overcome the bone aches and the pain to get on with your normal day, it can be quite difficult, but it's we have to do it.
• 26:16
  SPEAKER_03: It's we don't really have a choice in the matter.
• 26:18
  SPEAKER_00: Yeah, that's generally how I look at it is I think I've got a job to do, I've got a family to look after, uh, I've just got to get on with this.
• 26:27
  SPEAKER_00: Uh there are times when I give in to it, so I work a four-on, four-off shift pattern.
• 26:32
  SPEAKER_00: So generally the first rest day, and I certainly did it this week, I I don't get out of bed.
• 26:37
  SPEAKER_00: I'll just stay in bed all day, I'll get up to get some food and then go back and lay in bed again.
• 26:41
  SPEAKER_00: So this week, uh so I finish work at say six in the morning, but that's now my rest day.
• 26:46
  SPEAKER_00: So I go home, sleep for a few hours, then wake up, have something to eat, but then I'll just stay in bed for the rest of the day.
• 26:52
  SPEAKER_00: And this week, I think it was about half six, I finally got out of bed in the evening, and hot baths help as well.
• 26:59
  SPEAKER_00: Um chilling on a nice hot bath.
• 27:02
  SPEAKER_00: I generally try and have a bath every night.
• 27:03
  SPEAKER_00: I love hot baths, it just makes me feel good.
• 27:06
  SPEAKER_00: And it does take away some of the achiness.
• 27:09
  SPEAKER_00: But yeah, I I know I have to give up one of my rest days just to do nothing to try and kind of recuperate and recover.
• 27:18
  SPEAKER_00: But at the same time, I'm stubborn and think I'm gonna keep going.
• 27:22
  SPEAKER_00: This really hurts.
• 27:23
  SPEAKER_00: My knees are killing.
• 27:24
  SPEAKER_00: I sit at my desk, my knees, ankles absolutely throbbing on an almost daily basis.
• 27:29
  SPEAKER_00: Yeah.
• 27:30
  SPEAKER_00: But I just I just have to do it.
• 27:32
  SPEAKER_00: Because I could otherwise I just sit at home and do what yeah.
• 27:35
  SPEAKER_03: I mean, and how do you manage family life?
• 27:37
  SPEAKER_03: Because this is the other thing.
• 27:39
  SPEAKER_03: We do what we do for social media and the advocacy and everything else, but I think sometimes people only see us with with the stomas and our health condition rather than realising that we work, we have family, we have children, we have partners, extended family.
• 27:56
  SPEAKER_03: It does get quite difficult.
• 27:58
  SPEAKER_03: And I mean, if you're anything like me, you probably have a guilt thing where you know you're having a bad day, but you'll get up and you'll force yourself through to go and do something because you feel guilty.
• 28:06
  SPEAKER_04: And then you're ratty because you're struggling, then you take it out on your loved ones, and then you just feel like a crap person at the end of the day, and then you're like, why didn't I just stay in bed?
• 28:15
  SPEAKER_04: Yeah, but the next day you'll keep going and try again.
• 28:18
  SPEAKER_00: Uh there's definitely been times when I'd say I've neglected my family because of feeling rough where I just can't do it.
• 28:24
  SPEAKER_00: And I I don't know if if it's neglecting them, but I but there's definitely been occasions when I think I could have done more, I shouldn't have been snappy on that time, I shouldn't have done that.
• 28:34
  SPEAKER_00: And then you like you say, you get the guilt, and the guilt then kicks in and that's horrendous.
• 28:38
  SPEAKER_00: Yeah.
• 28:38
  SPEAKER_00: Then you try and overcompensate and then just make yourself ill again.
• 28:41
  SPEAKER_00: Yeah.
• 28:42
  SPEAKER_00: So it's trying to find the balance, and that can be that can be really difficult.
• 28:46
  SPEAKER_00: When you especially if you're, you know, you've just been diagnosed with an illness and you're getting all these symptoms and they're piling you with all the medications and you're getting all the horrendous side effects, they're horrible times because that's new, isn't it?
• 28:58
  SPEAKER_03: Yeah.
• 28:58
  SPEAKER_00: But once you're used to it and you understand your flare-ups, it it's okay.
• 29:03
  SPEAKER_00: It becomes easier to manage.
• 29:05
  SPEAKER_00: I I think when you're new to it, be it having a stoma or new to a diagnosis of Crohn's or UC or whatever the it may be, and all those medications, that is they're they're the really hardest times.
• 29:17
  SPEAKER_00: And that's why I try and help and support people, because you don't you don't know what's going on with your own body, you don't know what these medications are doing to you long term, which some medications I think have caused me long-term problems.
• 29:30
  SPEAKER_00: And so when you're new to it, you just say yes, don't you?
• 29:32
  SPEAKER_00: And you just take everything and you start getting really ill, you start getting ill from side effects, and that has a huge impact on your family.
• 29:40
  SPEAKER_00: So that's why I do what I do, is to try and support people and say it will get better.
• 29:46
  SPEAKER_00: It never seems it, but it will.
• 29:48
  SPEAKER_00: There's still dark days, we still have the odd dark days, but it does get better, and that's always what I try and say to people.
• 29:55
  SPEAKER_00: It will get better, it just takes time.
• 29:58
  SPEAKER_04: I I know for me, I find if I get presented with a new opportunity to do something, I feel like I have to take it because I physically couldn't do it before stoma surgery.
• 30:07
  SPEAKER_04: So I feel like, oh, now I'm possibly capable, I've got to run with it and try it because I couldn't have ever done it before.
• 30:14
  SPEAKER_04: But then sometimes it makes me worse.
• 30:16
  SPEAKER_04: And then I think, why did I do this?
• 30:18
  SPEAKER_04: I'm spinning too many plates.
• 30:19
  SPEAKER_03: Yeah, yeah, just my my toxic trait was never saying no.
• 30:24
  SPEAKER_03: Yeah.
• 30:24
  SPEAKER_03: So I'm not one for self-help books, might have got a few because there's one called the the subtle art of not giving it a.
• 30:32
  SPEAKER_03: Oh, right.
• 30:32
  SPEAKER_03: Yeah.
• 30:33
  SPEAKER_03: Um, and reading something, uh, you know, the art of saying that there's like a whole book series, the art of saying no.
• 30:40
  SPEAKER_03: Yeah, um, and I've actually read all of those and it makes you look at life a little bit differently.
• 30:46
  SPEAKER_03: And we have a guilt complex, we overcompensate.
• 30:51
  SPEAKER_03: Yeah.
• 30:51
  SPEAKER_03: Um, I think more so for Masing Ben, it's not so much the side effects or everything else with them.
• 30:58
  SPEAKER_03: It was the hormonal fluctuation.
• 31:02
  SPEAKER_05: Oh, yeah.
• 31:03
  SPEAKER_03: Um, because I had no control over that.
• 31:05
  SPEAKER_03: And since I've been doing the whole chemical menopause, I've not lost my temper once.
• 31:11
  SPEAKER_03: That might that might kick in some.
• 31:15
  SPEAKER_03: It could be just some raging episode brewing that's just just brewing up.
• 31:19
  SPEAKER_03: Yeah.
• 31:20
  SPEAKER_03: But it's just we do get short-tempered.
• 31:24
  SPEAKER_03: Oh, yeah, absolutely.
• 31:25
  SPEAKER_03: We do get tired.
• 31:26
  SPEAKER_03: Yeah.
• 31:27
  SPEAKER_04: And I do think that is everyone, but because ours is because of a chronic illness, it can feel amplified and you know, the guilt can feel worse.
• 31:35
  SPEAKER_04: But everyone has bad days and everyone takes stuff out on their loved ones.
• 31:39
  SPEAKER_04: And I just think, I don't know, because ours is so acute, it can just feel so much worse.
• 31:44
  SPEAKER_04: Like I at the end of the day, I might have major mum guilt because I haven't done enough with Jake, or I haven't, you know, given him, I haven't been in the present.
• 31:53
  SPEAKER_04: Like, do I really struggle with being in the present?
• 31:57
  SPEAKER_04: I am always thinking of something else, thinking of what I need to do.
• 32:00
  SPEAKER_04: Think I I can I really struggle with that mentally.
• 32:04
  SPEAKER_03: Yeah.
• 32:04
  SPEAKER_04: I don't know whether that I don't know why.
• 32:07
  SPEAKER_00: That's something you two pre No, see I I can only live for for now.
• 32:11
  SPEAKER_00: I can't, I can't plan.
• 32:13
  SPEAKER_00: That causes me all sorts of fogs and issues.
• 32:16
  SPEAKER_00: That's why I have an amazing wife that does most of that for me.
• 32:20
  SPEAKER_00: I I have to live in the now.
• 32:22
  SPEAKER_00: Um, it's the only way I get through is dealing with what's in front of me now.
• 32:25
  SPEAKER_00: That moves on to something else.
• 32:27
  SPEAKER_00: Planning, no, I can't do it.
• 32:30
  SPEAKER_00: It just it's an absolute mess in my brain when I try and plan.
• 32:34
  SPEAKER_03: I mean, so deal I mean, dealing with the now, I mean, how did you you find accepting or learning to accept your body or body image with a stoma from obviously a malperspective because we don't we don't have a lot of malperspective with regards to body image or confidence.
• 32:54
  SPEAKER_00: No, and that's I think that's a a really good question because whilst I'm super positive about life with a stoma, that is one of the it does still play on my mind.
• 33:03
  SPEAKER_00: You know, when we do the get together, I haven't done any shots in just my boxes.
• 33:08
  SPEAKER_00: I keep saying I would do it, and next time we get we have the get together, I will do it because I need to overcome that.
• 33:15
  SPEAKER_00: If I'm at If we're away on holiday, I generally have a t-shirt on.
• 33:19
  SPEAKER_00: Which is really strange because I'm so positive about it.
• 33:22
  SPEAKER_00: And occasionally I'll just whip my t-shirt off and say, Rachel, go on, take a photograph.
• 33:26
  SPEAKER_00: Get it it's almost like get it done.
• 33:28
  SPEAKER_00: So I I do have a a thought process of it, and I I love it.
• 33:35
  SPEAKER_00: It's changed my life, but sometimes I do look at it and think that's not attractive.
• 33:40
  SPEAKER_00: But I mean you can't make them attractive anyway, they are what they are, and you have nice bags like the black one that I'm wearing now, you know, they're they look nice, but yeah, sometimes I do still look at myself and think you've got a horrible body.
• 33:56
  SPEAKER_00: But I've always had a body image problem, so I don't think it's necessarily just the stoma.
• 34:01
  SPEAKER_00: I've always hated my body because I've always lost weight.
• 34:04
  SPEAKER_00: I've been everyone used to call me skinny, and I used to find it really offensive.
• 34:08
  SPEAKER_00: From a young age, I was always called skinny, and I was actually called skinny by a the person that should love you the most and care for you the most.
• 34:17
  SPEAKER_00: And that person used to call me it all the time.
• 34:20
  SPEAKER_00: So I hated it, I hated being called skinny, and then when I got ill, I got even skinnier.
• 34:25
  SPEAKER_00: And people would just say, Well, you're so skinny.
• 34:28
  SPEAKER_00: Well, I wish I could be as skinny as you.
• 34:30
  SPEAKER_00: I've always had that body image, I've always had that I'm skinny, I don't look good.
• 34:33
  SPEAKER_00: So then sometimes when I look at the stoma, I just think, well, that's just added to the fact that I don't look good.
• 34:39
  SPEAKER_00: But I think it's more of a body image, not the stoma.
• 34:42
  SPEAKER_00: I've just never, never liked my body.
• 34:44
  SPEAKER_00: I've hated it.
• 34:45
  SPEAKER_00: Always hated my body.
• 34:47
  SPEAKER_03: I mean, how do you find your stomach?
• 34:48
  SPEAKER_03: Because obviously, having a colostomy, I'm guessing yours is quite a bit bigger than I don't know, say my end iliostomy.
• 34:56
  SPEAKER_00: I'd say my I I reckon my stoma is probably smaller than your iliostomy.
• 35:03
  SPEAKER_00: It only sticks out, it's about the size of a tenpence piece and it only sticks out about that far.
• 35:08
  SPEAKER_03: Oh, like mine.
• 35:09
  SPEAKER_00: Yeah.
• 35:10
  SPEAKER_03: It's really weird because some people with I mean, I see it all the time, people's colostomy, and it's absolutely huge.
• 35:17
  SPEAKER_03: And I'm like, how can it be that big?
• 35:19
  SPEAKER_00: Yeah, no, mine's tiny, really.
• 35:21
  SPEAKER_00: My my the hole in my bag's only 25 mil.
• 35:24
  SPEAKER_03: Oh mine, mine is smaller than yours.
• 35:26
  SPEAKER_00: Oh, okay.
• 35:28
  SPEAKER_00: John, I thought 25 mil was small, it's like like that.
• 35:31
  SPEAKER_03: Yeah, my my mine is mine is literally mine is bang on 20, just under.
• 35:39
  SPEAKER_03: I cut it at 20, but there's always a little bit of a weird bit on the side, which is why I wear the barrier rings.
• 35:44
  SPEAKER_00: How far does it stick out then?
• 35:45
  SPEAKER_00: Because iliostomies generally stick out more than a colostomy.
• 35:48
  SPEAKER_03: Loop iliostomy, yes.
• 35:50
  SPEAKER_03: And iliostomy, no.
• 35:53
  SPEAKER_03: Yeah.
• 35:53
  SPEAKER_03: My my stoma probably sticks out about what would you say about that far, H?
• 35:57
  SPEAKER_04: Yeah, yours is biddy.
• 35:59
  SPEAKER_04: Yeah.
• 36:00
  SPEAKER_04: Like a button.
• 36:01
  SPEAKER_00: Biddy.
• 36:02
  SPEAKER_04: Um, in terms of again, going back to being a male with a stoma, is that something you have discussed openly with other males?
• 36:11
  SPEAKER_04: Like I know, like when, you know, as a female, we tend to in general be a lot more open, especially in our friendship circles and that, and make a joke of it, have a laugh, and get emotional about it, and we'll cry about it, and we'll laugh about it.
• 36:25
  SPEAKER_04: And but in a male's point of view, have you, you know, how do how does that work?
• 36:30
  SPEAKER_04: What do you do?
• 36:32
  SPEAKER_00: Um because I'm happy to talk about it.
• 36:36
  SPEAKER_00: I will talk about it.
• 36:37
  SPEAKER_00: And I will talk to my male friends about it, and I'll talk to men about it, and men at work are because sometimes when I'm at work, it it makes a noise anyway, and they kind of look at me with that, well, you know, where did that come from?
• 36:49
  SPEAKER_00: So I'll explain that I've got a stoma.
• 36:51
  SPEAKER_00: So I'm quite happy to talk about it, but not all men are comfortable with hearing it.
• 36:56
  SPEAKER_00: Some don't want to know.
• 36:57
  SPEAKER_03: Are you comfortable talking to your wife about it, Rachel?
• 37:00
  SPEAKER_00: Gotcha.
• 37:01
  SPEAKER_03: Oh, she sounds awesome.
• 37:02
  SPEAKER_03: I reckon she is.
• 37:03
  SPEAKER_03: Should we bring her in?
• 37:04
  SPEAKER_04: Let's bring her in.
• 37:05
  SPEAKER_04: So, Rachel, welcome.
• 37:07
  SPEAKER_04: It's so lovely to see you here.
• 37:08
  SPEAKER_04: We've never had a partner come in with a guest.
• 37:11
  SPEAKER_04: Um, and it's something that I think is really important that we share the partner's perspective.
• 37:16
  SPEAKER_04: Um, Chris, you've raved about Rachel for the last half an hour and rightly so.
• 37:21
  SPEAKER_04: Um, so I mean, what can you tell us about your experience being on the other side of it?
• 37:28
  SPEAKER_01: Um I don't know where to start really.
• 37:31
  SPEAKER_01: I suppose like listening to what you what you were saying earlier, like when you were first diagnosed, um I still remember that day really, really vividly.
• 37:44
  SPEAKER_01: Um and that was a real mixture of emotions.
• 37:48
  SPEAKER_01: Oh my god, I'm gonna get a bit teary.
• 37:51
  SPEAKER_01: But and how far we've come since then.
• 37:56
  SPEAKER_01: Sorry, I didn't know it was gonna go.
• 37:59
  SPEAKER_03: No, no, it is emotional and it it is a lot because I don't think I from a chronic illness perspective, I don't think we realise just how much our partners pick up or slack that they take, or maybe some of the stress that our other halves are under because we're used to living it, but our partners are literally the ones that pick up the pieces for when we are not having so many good days, and I think from a mal perspective for Chris, it can might might be a bit bit more demoralising for him and make him feel less manly because you're picking up more of the pieces, whereas with me, with my husband, I always have the guilt complex that he's doing too much and I'm not doing enough.
• 38:57
  SPEAKER_01: Yeah.
• 38:58
  SPEAKER_01: Yeah, I've never felt that Chris isn't, you know, I've never felt that like Chris is slacking or like the days that he has in bed, like I know you were just saying about you felt guilty and about that, but I've I've never had that.
• 39:16
  SPEAKER_01: I've always thought, oh God, you know, he's having a bad day, yeah, he needs to be in bed.
• 39:19
  SPEAKER_01: And yeah, that's never crossed my mind.
• 39:24
  SPEAKER_01: The the days that I've got kind of frustrated have been the days where we've been in hospital and they're not listening to us.
• 39:34
  SPEAKER_01: And the um I mean the I like you were saying about growing in confidence with with being able to kind of advocate for yourself, um, I always kind of found that quite easy to advocate for you because that's kind of I suppose it's the type of person I am and it's the type of work I've always done.
• 40:00
  SPEAKER_01: Um and I think then when you were um having more and more time in hospital and having to have surgery was when I started my training, and I was then building my own medical knowledge and understanding of the basic things that they needed to do for you.
• 40:23
  SPEAKER_01: So when we had those scary times when you were septic, I knew what had to be done, and I was then going into hospital feeling very confident that I would tell them what to do, they will do it, and if they don't, I will tell somebody else that they need to do it, and he will be it, he will be fine.
• 40:48
  SPEAKER_01: But I think like going back to what you were saying again about going into hospital to have um abscesses drained, and it became it became normal.
• 41:00
  SPEAKER_00: Like it did.
• 41:01
  SPEAKER_01: One like I remember one day going into work placement, dropping you off at um day surgery, and then walking round to what going in to do my work placement and saying to um the midwife that I was working with on that day, I'm really sorry I'm gonna have to have my phone on in my pocket because as soon as he's out of surgery, they're gonna ring me.
• 41:30
  SPEAKER_01: And as if that's normal, like that's normal that I'm at work and he's on the other side of the hospital having surgery.
• 41:37
  SPEAKER_01: And it wasn't until like she went, What do you mean?
• 41:40
  SPEAKER_01: And I was like, Well, he's just he's just popped into surgery today.
• 41:44
  SPEAKER_01: Yeah, it'd be done about three, but I'm gonna finish my shift then.
• 41:48
  SPEAKER_01: And she just like looked at me with her mouth wide open, and I was like, Oh yeah, I suppose that isn't quite normal.
• 41:54
  SPEAKER_01: But for us, by that point it was.
• 41:56
  SPEAKER_00: It was normal, wasn't it?
• 41:58
  SPEAKER_03: I mean, how did you find advocating for Chris?
• 42:00
  SPEAKER_03: Because I know from um like from a husband and wife perspective, I'm more pushy than my husband.
• 42:10
  SPEAKER_03: And it's a treat there, isn't it?
• 42:16
  SPEAKER_03: They don't like, I know from personal experience, they don't like being told what should be done.
• 42:24
  SPEAKER_03: Oh yes.
• 42:25
  SPEAKER_03: And I feel in the medical field, especially those with like, for instance, Chris in and out, in and out, in and out, in and out with an absurdist, we know what to do, we know what the treatment plan should be.
• 42:38
  SPEAKER_03: And it just drives me mad that they leave you there to fester for three or four days.
• 42:43
  SPEAKER_03: So your white blood cell count was quite low when you come in, and over a period of four days, it's going up and up and up and up and up.
• 42:50
  SPEAKER_03: And they're going, oh, we'll try this antibiotic, we'll try that antibiotic.
• 42:54
  SPEAKER_03: Well, no, it needs to be drained.
• 42:55
  SPEAKER_03: Yes.
• 42:56
  SPEAKER_03: Oh, but you're so complex, and because you've got this and because you've got that, we're gonna have to put with this radiologist, but they might say no, and then we might have to do it this way, we might have to do it that way.
• 43:06
  SPEAKER_03: And I've shouted.
• 43:08
  SPEAKER_03: Yeah.
• 43:08
  SPEAKER_03: Oh, you know, sometimes you have to shout, don't you?
• 43:13
  SPEAKER_00: We've both done it, haven't we?
• 43:14
  SPEAKER_01: Absolutely.
• 43:15
  SPEAKER_00: More so more you than than me, but that there are there have been occasions where I've had to shout, and you're right.
• 43:20
  SPEAKER_00: Sometimes you've just you don't want to, but you think it's just the only one I'm gonna be heard.
• 43:26
  SPEAKER_01: Yeah.
• 43:26
  SPEAKER_00: Uh and you were very good at it, to be fair.
• 43:32
  SPEAKER_01: But I suppose when you're not ashamed of saying I'm very good at shouting.
• 43:35
  SPEAKER_04: Like you said that um it was normal for you dealing with it all the time, but for you watching him experience that, it can't have felt like it should be normal for him, and must have given you that fire in your belly to Yeah, I think that's yeah, that's right, yeah.
• 43:51
  SPEAKER_01: And and um I think I I have like like you s like you said, you just kind of What's going to work and what's not going to after you've been through it so many times?
• 44:04
  SPEAKER_01: So you're like, I don't want to go through all that wasting time, being here for another 24 hours with nothing happening.
• 44:11
  SPEAKER_01: So let's just cut to the chase now and get on with it.
• 44:14
  SPEAKER_03: How have you found with like going to especially w when Chris is in hospital, he's having a bad day?
• 44:20
  SPEAKER_03: How have you found like how have you overcome the challenges and what advice would you give to couples that are going through the same sim same or similar experience?
• 44:32
  SPEAKER_01: Um so I think like in the beginning the challenges were that the children were quite young, so it was that whole kind of balance of um you know, like just the practical stuff, how you're getting the kids to school, who's picking them up and like things like that.
• 44:50
  SPEAKER_01: And then had a bit of time just kind of I suppose having to arrange things quickly.
• 44:59
  SPEAKER_01: I mean, I've got fantastic parents that have been great support as well when it comes to doing school run and things like that.
• 45:05
  SPEAKER_01: But um I I think another thing that became quite normal was our children not expect like suddenly grandad's there picking us up from school.
• 45:17
  SPEAKER_01: Oh, that's okay, I didn't know that was gonna happen.
• 45:20
  SPEAKER_01: But and then grandad going, Oh, well, dad's had to go to hospital, um, you know, mum would be home later and everything would be fine.
• 45:27
  SPEAKER_01: And the kids weren't like that wasn't wasn't a shocker.
• 45:31
  SPEAKER_01: And then we also had a bit of criticism from school about how honest we were with our children.
• 45:38
  SPEAKER_01: So we're we've always been very, very honest with our children about Chris's illness and when he's in hospital and when we expect him to come home and what surgery he's having and all of those things, which we we are like that about everything with our children, very open and honest.
• 45:54
  SPEAKER_01: We should do lay every day.
• 45:56
  SPEAKER_01: I know.
• 45:56
  SPEAKER_01: So we actually I actually one day was called in by a teacher, my son's teacher, to say, um uh, you know, I I'm a bit worried about um, you know, what Nathan knows.
• 46:09
  SPEAKER_01: And it's like, what do you mean?
• 46:11
  SPEAKER_01: And she's like, Well, your your husband's quite seriously ill.
• 46:14
  SPEAKER_01: And I was like, Well, he's ill.
• 46:15
  SPEAKER_01: I mean, not gonna die, but you know, yeah, he is ill, but I'm obviously not gonna say, Oh, my husband's on holiday, my husband's in hospital, you know.
• 46:25
  SPEAKER_01: You love a holiday if that's the truth, I think.
• 46:28
  SPEAKER_01: And and she was a bit taken aback by that.
• 46:30
  SPEAKER_01: And I was like, at the time, Nathan was what, about 10, I remember.
• 46:33
  SPEAKER_01: Yeah, and I was like, Well, he's not dumb.
• 46:37
  SPEAKER_01: He's he knows that dad's coming home and then gonna be in bed for a few days.
• 46:42
  SPEAKER_01: You don't do that when you come back from a holiday or from work, you know.
• 46:45
  SPEAKER_03: You like Maisie's teachers knew better than to ask that question.
• 46:49
  SPEAKER_01: Well, that was it.
• 46:50
  SPEAKER_01: That was like the first and last time that anyone ever approached that with me.
• 46:55
  SPEAKER_00: Let's not we shouldn't be lying to our kids, should we?
• 46:58
  SPEAKER_00: No, it's been honest, wouldn't it?
• 47:00
  SPEAKER_01: At the end of the day, they can smell a liar, Mark.
• 47:02
  SPEAKER_01: Absolutely, yeah.
• 47:03
  SPEAKER_01: So I think that's always been a big bit of advice that we um say to to people with kids is to be honest with them.
• 47:11
  SPEAKER_00: Just in general, it's to be honest, isn't it?
• 47:13
  SPEAKER_00: Not just even about to your kids, just being honest with your loved ones, with your family.
• 47:17
  SPEAKER_00: Just be honest.
• 47:18
  SPEAKER_00: I know someone that had a stoma surgery, and he went years without telling his kids that even had it.
• 47:25
  SPEAKER_00: I thought that was really sad.
• 47:26
  SPEAKER_00: But just be honest.
• 47:28
  SPEAKER_00: Be honest with everybody.
• 47:29
  SPEAKER_03: What if I mean if he was struggling to accept his doma at the time, what advice would you give to someone who is really struggling to accept their stoma?
• 47:41
  SPEAKER_00: Absolutely talk.
• 47:42
  SPEAKER_00: Um watch my YouTube channel.
• 47:46
  SPEAKER_05: What's it called, Chris?
• 47:48
  SPEAKER_00: It's called Sydney's stoma.
• 47:50
  SPEAKER_00: Um but yeah, talk.
• 47:52
  SPEAKER_00: Talk talk to people that have got stomas.
• 47:56
  SPEAKER_00: Don't go and talk to a nurse that hasn't got one.
• 47:59
  SPEAKER_00: The stoma team and nurses are great, but talk to someone that's got one, talk to someone that you know is really positive about life of a stoma and realise that you can you can still do everything you ever did before.
• 48:12
  SPEAKER_00: In fact, I can do more.
• 48:13
  SPEAKER_04: Yeah, can't I?
• 48:14
  SPEAKER_00: I can do something more.
• 48:16
  SPEAKER_00: So yeah, talk to people that have got one, find those really positive people because it will make a difference, absolutely.
• 48:25
  SPEAKER_01: Yeah, and I I'd say that like but like as in terms of our relationship, that talking about how we feel.
• 48:35
  SPEAKER_01: I mean, I remember that was that was you you said earlier about like not really having a conversation with the surgeon, but she actually was one of the things she said was, Is Rachel on board with this?
• 48:46
  SPEAKER_01: Is Rachel still gonna fancy you?
• 48:48
  SPEAKER_00: She did say that.
• 48:50
  SPEAKER_01: She has said, I mean, we love her.
• 48:52
  SPEAKER_01: No, no, we love her, we love her.
• 48:59
  SPEAKER_01: Because I think she kind of got us.
• 49:02
  SPEAKER_01: She's got in the beginning.
• 49:04
  SPEAKER_01: And she was like, she didn't want to do anything that was gonna interfere with that.
• 49:11
  SPEAKER_00: She said, Were you still fancy Chris with a bag?
• 49:13
  SPEAKER_01: Yeah, she's like me.
• 49:15
  SPEAKER_00: I mean, it's hilarious.
• 49:16
  SPEAKER_04: She's so funny.
• 49:17
  SPEAKER_04: But she gets us, and we've known her a long time, and yeah, so that's nice when you've got the same people and they you develop that religion.
• 49:24
  SPEAKER_00: I've got three angels in my life.
• 49:26
  SPEAKER_00: My surgeon's one, Rachel's one, and my daughter's the other.
• 49:29
  SPEAKER_01: Oh sorry, hold on.
• 49:33
  SPEAKER_01: Which one was first?
• 49:35
  SPEAKER_01: Not me.
• 49:35
  SPEAKER_01: It was just we were talking about it.
• 49:36
  SPEAKER_01: Yeah, all right, okay, it's you.
• 49:39
  SPEAKER_01: I was banging on about you for 30 minutes.
• 49:41
  SPEAKER_01: You're fine, you're good.
• 49:43
  SPEAKER_01: But um, but yeah, so you know, we've kind of that that I think actually that sums up our relationship.
• 49:51
  SPEAKER_01: Is that that's how honest and open and like we don't take anything seriously and yeah.
• 49:59
  SPEAKER_04: Oh, you're lush together.
• 50:01
  SPEAKER_04: I think it's it's so lovely to see a good relationship and how it's made you stronger, and how you're such an advocate for Chris.
• 50:08
  SPEAKER_04: It's it's a beautiful thing.
• 50:10
  SPEAKER_04: You're a very lucky man.
• 50:12
  SPEAKER_00: I am indeed.
• 50:12
  SPEAKER_00: Yes.
• 50:14
  SPEAKER_00: She's also very lucky.
• 50:15
  SPEAKER_03: We would like to say thank you to listening to Beyond the Pouch.
• 50:19
  SPEAKER_03: We hope you have enjoyed listening and you took you can take something valuable away from this episode.
• 50:24
  SPEAKER_03: Um, we'd love to say massive thank you to Chris and Rachel.
• 50:28
  SPEAKER_03: It's been lovely having you guys, and thank you.
• 50:31
  SPEAKER_00: Thank you.
• 50:32
  SPEAKER_00: It's been fantastic.
• 50:33
  SPEAKER_03: Yeah, we'll be back again and we'll see you next time.
• 50:36
  unknown: Thank you.
• 50:36
  SPEAKER_02: Thank you.