Latest / Beyond the Pouch / Mental Health Matters: Men’s Health Takeover Ep. 2 – Beyond the Pouch
Transcript
- 0:00SPEAKER_03: In those four years, I just sort of went into my shell.
- 0:04SPEAKER_03: It wasn't me at all.
- 0:06SPEAKER_03: Right?
- 0:06SPEAKER_03: Illness can put you in such a dark place.
- 0:09SPEAKER_03: And yes, I would say I've never struggled with mental health, but boy, I struggled with mental health.
- 0:15SPEAKER_05: I still do suffer with mental health.
- 0:17SPEAKER_05: I do suffer with depression, anxiety, social anxiety.
- 0:21SPEAKER_05: And that depression went on and on and on and on for years and years.
- 0:24SPEAKER_05: So it's in some really dark places.
- 0:27SPEAKER_05: And that was before having a diagnosis.
- 0:30SPEAKER_00: I get the diagnosis of cancer, and I go through chemo, then emergency surgery, and then coming out of it.
- 0:38SPEAKER_00: Loads of things that happened all at the same time.
- 0:41SPEAKER_04: Yeah.
- 0:42SPEAKER_00: Which trying to process all of that.
- 0:46SPEAKER_00: It's huge.
- 0:47SPEAKER_00: It broke me.
- 0:48SPEAKER_00: It really did break me.
- 0:49SPEAKER_00: I am existing, I'm not living.
- 0:51SPEAKER_02: But that won't last forever.
- 0:53SPEAKER_02: Like it's temporary.
- 0:59SPEAKER_02: Right then, welcome back to episode two of Beyond the Pouch, Men's Health Takeover.
- 1:05SPEAKER_02: And this week we're going to be focusing on mental health and looking at not just how stoma surgery or diagnosis can impact you physically, but more importantly, how it's going to impact you mentally.
- 1:16SPEAKER_02: And again, I've got some incredible people who are happy to have conversations with up to date.
- 1:20SPEAKER_02: We've got Keith, we've got Chris, we've got Mo, and we've got myself.
- 1:23SPEAKER_02: And we're going to look at the general sort of struggles with mental health, the importance of why we need to talk about it, and then maybe some solutions and options that you can offer everybody else.
- 1:33SPEAKER_02: So, guys, morning, get your tea in.
- 1:35SPEAKER_02: How are you done before?
- 1:36SPEAKER_02: Good morning.
- 1:37SPEAKER_02: How are you?
- 1:37SPEAKER_02: Yeah, it's a good one.
- 1:38SPEAKER_02: Yeah, not bad.
- 1:39SPEAKER_02: Back to you.
- 1:40SPEAKER_02: I've got an empty again in a minute, but it's all good.
- 1:43SPEAKER_02: Like, what's if we talk about mental health and we talk about this, like what's been one of the biggest impacts for you on your we've talked about your journeys and we've gone through those sorts of things, but what's like something that's really impacted you and your mental health on your journeys?
- 1:57SPEAKER_03: I'd start then, sorry.
- 1:58SPEAKER_02: As I'm looking at you, I guess it makes sense.
- 2:01SPEAKER_03: So um if you were to ask me about um me and mental health.
- 2:08SPEAKER_03: Do you want me to ask you about you and mental health?
- 2:09SPEAKER_03: Well yeah, you asked me about me and mental health.
- 2:11SPEAKER_03: What's your mental health?
- 2:12SPEAKER_03: Go on.
- 2:12SPEAKER_03: Well I would say to you, I've never struggled with mental health.
- 2:15SPEAKER_03: Okay.
- 2:16SPEAKER_03: But I am totally wrong.
- 2:18SPEAKER_03: Because when I look back at my journey, um before I was diagnosed with ulcerative colitis in 2008, I would say for the four years prior to that, my health was absolutely horrendous.
- 2:33SPEAKER_03: Um physical and mental both.
- 2:36SPEAKER_03: Both.
- 2:36SPEAKER_03: Okay.
- 2:36SPEAKER_03: Both.
- 2:37SPEAKER_03: And I didn't realise the mental health was bad.
- 2:39SPEAKER_03: I knew the physical health was bad because I missed a lot of work.
- 2:43SPEAKER_03: Yeah, yeah, yeah, yeah.
- 2:44SPEAKER_03: So I would typical day, I would get up in the morning, have to be in work by 7:30.
- 2:49SPEAKER_03: I would drive to the top of the road, soil myself, turn around, go back home, have a shower, chuck the clothes in a bag, in a black bag, ready to be washed.
- 3:00SPEAKER_03: And then it's a case of do you go to work or do you phone in sick?
- 3:04SPEAKER_03: And I always phone in sick.
- 3:06SPEAKER_03: So full credit to the uh factory I was working in at the time, Coljian passenger seat, and they were brilliant.
- 3:13SPEAKER_03: They gave me my own toilet with a key.
- 3:16SPEAKER_03: Yeah, it was it was it was fantastic.
- 3:18SPEAKER_03: They looked after me right up to my operation.
- 3:21SPEAKER_03: But my point is, uh, in those four years, I just sort of went into my shell.
- 3:28SPEAKER_03: It wasn't me at all, right?
- 3:30SPEAKER_03: I would come home from work and I would go to the bedroom, I would lay on the bed.
- 3:35SPEAKER_03: If friends called, if family called, I found myself just not wanting to talk to people.
- 3:41SPEAKER_03: I would just shut myself off and pretend I was worse than I was, which seems really bad now, thinking back on it.
- 3:50SPEAKER_03: Um I didn't understand what other people were doing.
- 3:54SPEAKER_03: Um I was living then with my three stepchildren who were teenage, eight years, and every little thing that people did upset me.
- 4:06SPEAKER_03: And I was quite vocal about it.
- 4:08SPEAKER_03: And I know I upset them.
- 4:09SPEAKER_03: I do apologize.
- 4:10SPEAKER_03: They know I have apologised many times, but it's illness.
- 4:15SPEAKER_03: Illness can put you in such a dark place.
- 4:17SPEAKER_03: And yes, I would say I've never struggled with mental health, but boy, I struggled with mental health for it.
- 4:23SPEAKER_03: Well, look, I really did.
- 4:24SPEAKER_03: Thank you for sharing that.
- 4:25SPEAKER_02: Yeah.
- 4:25SPEAKER_02: Because, like, seriously, like we've spoken about this a few times, and you've gone, no, I've done not really actually not really affected me.
- 4:31SPEAKER_02: But the fact that you've said that there, it's strange.
- 4:34SPEAKER_03: You just you just do not realise that mental health affects everybody, even when they think it's not.
- 4:40SPEAKER_02: Yeah.
- 4:41SPEAKER_02: Well even like to your point where you just said like you get up back from work, you're tired, but that's mentally having a toll on you.
- 4:46SPEAKER_02: And also I don't want to have to deal with people because not just physically you could be exhausted, but eventually.
- 4:53SPEAKER_03: I was pretty bad, but I I made out I was worse than I was, just not to see people.
- 4:57SPEAKER_03: Um, illness is a very dark place, guys.
- 5:00SPEAKER_03: Yeah, really is.
- 5:00SPEAKER_02: Look, thank you for sharing.
- 5:01SPEAKER_02: I think that's the important thing.
- 5:02SPEAKER_02: And on this this episode, particularly, there's going to be some like difficult topics, but like talking about it is what's going to be really important.
- 5:08SPEAKER_02: And I've I'm going to just flip it around to you guys because you've both again started to talk about in other episodes.
- 5:14SPEAKER_02: But tell us.
- 5:15SPEAKER_05: My name's Chris, I suffer with mental health.
- 5:17SPEAKER_05: Uh I still do suffer w with mental health.
- 5:20SPEAKER_05: I do suffer with depression, anxiety, social anxiety.
- 5:26SPEAKER_05: I've learned to live with it and I've learned how to to control it.
- 5:30SPEAKER_05: I'd learn I I see the signs when it's coming, I can feel it, and I can make steps to change that now.
- 5:36SPEAKER_05: Which is really positive.
- 5:37SPEAKER_05: And it's powerful that I recognise it myself, and I think I'm going into a depressive state here.
- 5:42SPEAKER_05: I need to take action because it affects so many people.
- 5:45SPEAKER_05: It affects everyone around me, it'll affect people at work.
- 5:48SPEAKER_05: So now I I know it's coming and I can feel it coming on.
- 5:51SPEAKER_05: So I can deal with it.
- 5:52SPEAKER_02: Yeah, 100%.
- 5:53SPEAKER_05: But there were times when I didn't know how to deal with it.
- 5:57SPEAKER_05: And I've suffered with mental health depression uh probably since childhood.
- 6:02SPEAKER_05: Yeah.
- 6:03SPEAKER_05: There was a lot of things in my childhood that were quite traumatic.
- 6:06SPEAKER_05: And there wasn't really I'm 50 years of age now.
- 6:09SPEAKER_02: Yeah, yeah.
- 6:10SPEAKER_05: And back then, look going back to when I was a kid, there wasn't really support for mental health.
- 6:15SPEAKER_05: It wasn't recognised.
- 6:17SPEAKER_05: I probably I didn't recognise it myself that I was suffering with mental health.
- 6:21SPEAKER_05: I just I never became a recluse as such.
- 6:24SPEAKER_05: I still went out and had good times, etc.
- 6:27SPEAKER_05: But I had a very low tolerance of people because of how I felt about myself.
- 6:33SPEAKER_05: And that depression went on and on and on and on for years and years.
- 6:36SPEAKER_05: It was in some really dark places, and that was before having a diagnosis.
- 6:41SPEAKER_05: Yeah.
- 6:42SPEAKER_05: You know, this and we were talking from childhood, but I've always believed I've had Crohn's since I was a child, yeah.
- 6:47SPEAKER_05: But I didn't get diagnosed well into adult life.
- 6:50SPEAKER_05: So then I started getting ill, really ill.
- 6:54SPEAKER_05: I was always ill from a kid, always having stomach issues.
- 6:58SPEAKER_05: Uh but then once sort of becoming an adult as such, that the illness got worse and it was really kind of taking over.
- 7:04SPEAKER_05: And I hated me.
- 7:07SPEAKER_05: So because I hated me, I hated everybody else.
- 7:10SPEAKER_05: And I'd shut people out, I'd be rude to people, and the illness was just progressively getting worse and worse.
- 7:19SPEAKER_05: And I was in hospital countless times, having countless procedures, again, still no one identifying what was wrong with me.
- 7:26SPEAKER_05: Yeah.
- 7:26SPEAKER_05: And that was the hardest thing, yeah, because I knew there was something wrong with me.
- 7:30SPEAKER_05: But the problem I had, I had people around me, I had a very, very close family member that was telling me I was doing it to myself.
- 7:39SPEAKER_01: Yeah.
- 7:40SPEAKER_05: And this close family member paid a lot of money for me to go and see a top gastro consultant in the country.
- 7:47SPEAKER_05: The top gastro consultant in the country.
- 7:51SPEAKER_05: And he did some tests and he missed it.
- 7:54SPEAKER_02: Flipping it.
- 7:55SPEAKER_05: So when I came out of that private hospital, this person collected me and said, sat in the car, and she said, This stops now.
- 8:04SPEAKER_02: Wow.
- 8:05SPEAKER_02: This stops.
- 8:06SPEAKER_05: You're never talking about it again.
- 8:08SPEAKER_05: There's nothing wrong with you.
- 8:09SPEAKER_05: You're doing this to yourself.
- 8:10SPEAKER_05: That must have that must have such a big impact on you.
- 8:13SPEAKER_05: It was devastating.
- 8:14SPEAKER_05: Yeah, like absolutely devastating.
- 8:16SPEAKER_05: So that just spiraled my mental health.
- 8:20SPEAKER_05: And I thought, to the point where I was thinking, Am I making this up?
- 8:24SPEAKER_05: Well, is my brain that powerful that it is making me bleed from my backside?
- 8:29SPEAKER_05: It is making me have diarrhea, it is causing me to lose bowel control and be in all this agony.
- 8:34SPEAKER_05: So, because of that one person, I completely questioned everything about myself.
- 8:38SPEAKER_04: Yeah.
- 8:39SPEAKER_05: And I think, well, I must be doing it.
- 8:41SPEAKER_05: You know, the top gastro consultant in the country hasn't got it.
- 8:45SPEAKER_05: So, you know, the countless hospital visits with no diagnosis of being accused of being a drug addict and by hospital staff saying to me, What drugs are you on?
- 8:54SPEAKER_05: I'm like, I'm not on any drugs.
- 8:56SPEAKER_02: Yeah.
- 8:56SPEAKER_05: No, you are.
- 8:57SPEAKER_05: No, I'm not.
- 8:57SPEAKER_05: Do blood tests.
- 8:58SPEAKER_02: Is that because you were in there like abdominal pain, things like that?
- 9:01SPEAKER_02: Yeah, yeah.
- 9:02SPEAKER_05: You know, really, really, really thin clothes would just hang off me.
- 9:08SPEAKER_05: And I I wouldn't look at myself in the mirror.
- 9:10SPEAKER_05: I didn't look at myself in the mirror for, oh I mean years.
- 9:12SPEAKER_05: Yeah.
- 9:13SPEAKER_05: I hated my body, I hated everything about it.
- 9:16SPEAKER_05: Which all that was doing was fueling that depression, fueling that part of my brain that was telling me you're worthless, Chris.
- 9:21SPEAKER_05: You've got nothing to live for.
- 9:22SPEAKER_05: Look at you, your body's horrific, your mind's horrific, you might as well just end your life.
- 9:27SPEAKER_05: And that's that's where it got to.
- 9:30SPEAKER_05: Where I I I was suicidal.
- 9:32SPEAKER_05: Yeah.
- 9:33SPEAKER_05: I planned it, I knew I was gonna do it.
- 9:36SPEAKER_05: And at this by this stage, I had Rachel, my son was born.
- 9:40SPEAKER_05: Uh Leah hadn't been born yet, it was just Nathan.
- 9:44SPEAKER_05: And I was convinced they'd be better off without me.
- 9:46SPEAKER_05: Yeah.
- 9:47SPEAKER_05: Because all they've got is this shell of a man lying on a bed constantly in pain, phoning in sick.
- 9:51SPEAKER_05: Well, I used to force myself to go to work, and I'd collapse at work.
- 9:54SPEAKER_05: And at the time, when I was a PC, my sergeant used to scrape me up off the floor and take me to the hospital.
- 10:00SPEAKER_05: I'd walk into work and he'd be like, Chris, go home, have a look at yourself.
- 10:04SPEAKER_05: But I wouldn't have a look at myself.
- 10:05SPEAKER_05: Yeah, no, of course.
- 10:06SPEAKER_05: And you know, and then I had the the loss of bowel control.
- 10:09SPEAKER_05: I was at work, pooing myself.
- 10:11SPEAKER_05: As a cop, that's really bad times when you're in someone's house and you're like, Oh dear, yeah, I've just soiled myself sitting in somebody's house who's a victim of crime, who's going through a trauma, and they've got this cop sat opposite and that's just filled his pants.
- 10:25SPEAKER_05: So again, that just kept fueling that mental health and that depression of there's no point you're being here.
- 10:31SPEAKER_05: So just end your life.
- 10:32SPEAKER_02: Well I was gonna say, how did you because look the way you are now, right?
- 10:35SPEAKER_02: And how have you what strat well not strategies, but what started you on that process to understand your emotions that bit and then get the help you needed?
- 10:45SPEAKER_05: Like it kind of got to the point where uh I was even saying to Rachel, you need to leave me.
- 10:51SPEAKER_05: Just leave, just go away.
- 10:53SPEAKER_05: Is that because you felt so rubbish yourself?
- 10:55SPEAKER_05: Yeah, absolutely.
- 10:56SPEAKER_05: I hated myself.
- 10:57SPEAKER_05: I hated myself, I hated Sounds harsh.
- 11:01SPEAKER_05: I hated the life I was in.
- 11:02SPEAKER_05: Yeah.
- 11:03SPEAKER_05: And it wasn't the life in terms of Rachel and my kids and my good friends.
- 11:07SPEAKER_05: It was I just hated life.
- 11:09SPEAKER_05: Oh, yeah.
- 11:10SPEAKER_05: Because I hated myself so much.
- 11:12SPEAKER_05: So I just think, well, why do you want to be with me?
- 11:14SPEAKER_05: Why you why you just leave?
- 11:15SPEAKER_05: And I I said to Rachel one year before we were we were due to get married, and I was sat in the bath and I just said to her, I don't want you in my life anymore, go away.
- 11:24SPEAKER_02: Wow.
- 11:24SPEAKER_05: Just leave, go away.
- 11:25SPEAKER_05: I don't want you.
- 11:26SPEAKER_02: How did she how did she take that?
- 11:28SPEAKER_05: She's she was very cool.
- 11:30SPEAKER_05: Um and she knew it, she knew the depressive kind of state I was in.
- 11:35SPEAKER_01: Right, okay.
- 11:36SPEAKER_05: So she gave me a bit of space, she said, I'll leave you for a couple of days.
- 11:39SPEAKER_01: Yeah.
- 11:40SPEAKER_05: And then she came back and she said, Um, right, you're getting counselling.
- 11:44SPEAKER_05: You're gonna get we're gonna get your help.
- 11:46SPEAKER_01: Yeah.
- 11:47SPEAKER_05: And uh she said, I'm not leaving you.
- 11:49SPEAKER_05: Yeah.
- 11:50SPEAKER_05: And I never wanted her to leave me.
- 11:51SPEAKER_05: Of course I didn't.
- 11:52SPEAKER_05: And I I said that.
- 11:53SPEAKER_05: I said, I I don't want you to I don't want us to split up.
- 11:55SPEAKER_05: We did postpone the wedding to the following year.
- 11:57SPEAKER_04: Yeah.
- 11:58SPEAKER_05: It was that was the absolutely right thing to do.
- 12:00SPEAKER_05: I was gonna say, like, yeah, it sounds absolutely was because I was not in a good place.
- 12:04SPEAKER_05: And so I got some counselling.
- 12:06SPEAKER_05: Yeah, yeah.
- 12:07SPEAKER_05: And that really helped.
- 12:08SPEAKER_05: And that was when um I finally started to realise I can talk about these things.
- 12:15SPEAKER_05: And counselling, I'm a big advocate of counselling, but I always say to people the first two or three sessions are brutal because you've got to dig deep and you've got to tell a stranger what what's in there.
- 12:26SPEAKER_02: Yeah.
- 12:27SPEAKER_05: And it took me a couple of counsellors to find the right counsellor that worked for me.
- 12:30SPEAKER_05: Because your counsellor's not always going to be the right one for you.
- 12:32SPEAKER_02: Yeah, 100%.
- 12:33SPEAKER_05: But you've got to make that step of, okay, this counsellor's not working for me, I need to try another one, rather than give up.
- 12:39SPEAKER_05: Yeah.
- 12:39SPEAKER_05: Because giving up would have been really easy.
- 12:42SPEAKER_05: And it was on one of those counselling sessions that one of the early ones, where I came out of it and I f I felt exhausted and I didn't feel positive about that counselling session.
- 12:54SPEAKER_05: And that was when I nearly went through with one of my plans to commit suicide.
- 13:00SPEAKER_05: I won't go into the ins and outs of what I was gonna do, but something just flashed in my mind when I was thinking, well, I'm gonna go and do this that just said, Chris, not now, don't do this.
- 13:09SPEAKER_05: Obviously, I didn't.
- 13:11SPEAKER_05: And that realization of thinking I was on the edge of committing suicide.
- 13:15SPEAKER_01: Wow.
- 13:16SPEAKER_05: I can never be in that position again.
- 13:17SPEAKER_05: No, never.
- 13:19SPEAKER_05: So again, that was another driver for me to get some help and start talking.
- 13:25SPEAKER_05: So I'd open up a lot more to Rachel.
- 13:27SPEAKER_05: Yeah.
- 13:27SPEAKER_05: Rachel would come along to some of my counselling sessions.
- 13:30SPEAKER_05: This was putting a huge amount on Rachel.
- 13:32SPEAKER_05: Yeah, yeah.
- 13:33SPEAKER_05: Huge amount.
- 13:34SPEAKER_05: To the point where then Rachel needed counselling to get over what I was releasing.
- 13:39SPEAKER_05: I had a very kind of there's lots of my childhood that are amazing, but there's lots of it that was really traumatic, which probably kind of aided the Crohn's, really.
- 13:47SPEAKER_05: Yeah.
- 13:47SPEAKER_05: The stress of was probably making the Crohn's worse.
- 13:51SPEAKER_05: 100%.
- 13:52SPEAKER_02: 100%.
- 13:52SPEAKER_05: And there were a lot of things in my childhood that were just so stressful.
- 13:57SPEAKER_05: And that was just contributing towards probably the Crohn's, contributing to my mental health.
- 14:02SPEAKER_05: I was made to feel worthless by that same person.
- 14:06SPEAKER_05: So I I I I never understood what a man should be.
- 14:10SPEAKER_01: Yeah.
- 14:10SPEAKER_05: And that that I fought that for years.
- 14:12SPEAKER_05: I'm I'm a man, I'm supposed to be a man, but I feel like this.
- 14:15SPEAKER_05: I can't talk about this because I'm a man.
- 14:18SPEAKER_05: And I didn't have a father figure.
- 14:20SPEAKER_05: So I didn't know what a man should be.
- 14:23SPEAKER_05: So I was always fighting that as well.
- 14:24SPEAKER_05: What's my role in life here?
- 14:26SPEAKER_05: And I just didn't think I had one.
- 14:28SPEAKER_05: It was just got to that point where I thought there is no role for me on this earth.
- 14:32SPEAKER_05: But it's Rachel, Rachel.
- 14:36SPEAKER_05: It's all good.
- 14:38SPEAKER_05: She kept me alive.
- 14:39SPEAKER_05: Yeah.
- 14:39SPEAKER_05: Yeah.
- 14:40SPEAKER_05: Without a doubt.
- 14:41SPEAKER_05: And we are so glad.
- 14:42SPEAKER_05: If it wasn't for Rachel, and I've said this, you know, time and time again.
- 14:45SPEAKER_05: If it if it wasn't for her, I wouldn't be here.
- 14:47SPEAKER_05: That is a fact.
- 14:49SPEAKER_05: But she just kept just very gently, you need help.
- 14:54SPEAKER_05: But you know, she wasn't forceful with it, just so I did.
- 14:57SPEAKER_05: And with that, and then once I started counselling, it was like a light bulb, really.
- 15:04SPEAKER_05: But so then I was learning to manage depression, but I still had all these health problems, and I had no diagnosis.
- 15:11SPEAKER_05: And it was I was thinking, I've kind of recognised and I've got mental health, but now I'm fighting this other problem of there's something wrong with my body, and no one can tell me what it is.
- 15:20SPEAKER_05: So eventually, obviously it did, you know.
- 15:24SPEAKER_05: Obviously, lying in a hospital bed, I got told I had Crohn's.
- 15:27SPEAKER_05: So then that was a good moment.
- 15:29SPEAKER_05: Whilst I got told, in not the best circumstances, it was an amazing moment.
- 15:32SPEAKER_05: So finally, finally, I've got something I can cling on to.
- 15:37SPEAKER_05: And I had that diagnosis.
- 15:39SPEAKER_05: My health still got progressively worse, even though I was on medication, I was on biologics for seven years, going to the hospital every four weeks for inflictionab infusions, did that for seven years.
- 15:49SPEAKER_05: The the the um perianal fistulas were just ruined my backside, I had no bowel control whatsoever.
- 15:56SPEAKER_05: And it got to that point where in the end I said to my surgeon, enough's enough.
- 16:00SPEAKER_05: Just cut this out.
- 16:00SPEAKER_05: Yeah, just get it all out and give me a bag.
- 16:03SPEAKER_05: And for me, that's that's when my mental health really changed.
- 16:07SPEAKER_05: Yeah.
- 16:07SPEAKER_05: Is when I had the bag.
- 16:08SPEAKER_05: Yeah.
- 16:09SPEAKER_01: Yeah.
- 16:09SPEAKER_05: Because that changed my life.
- 16:11SPEAKER_05: It gave me my life back.
- 16:12SPEAKER_05: And I can generally do pretty much what I want.
- 16:15SPEAKER_05: I've got other health issues going on that prevent me doing some things, but overall, my quality of life just massively improved, which then improved my mental health.
- 16:24SPEAKER_05: Yeah, yeah.
- 16:25SPEAKER_05: Which then it's like a knock on a finger.
- 16:27SPEAKER_05: Yeah.
- 16:28SPEAKER_05: And it was that kind of knock-on that then I thought I need to share this, I need to help others, which is why I set up my YouTube channel.
- 16:35SPEAKER_02: I literally I was gonna say, like, again, that's such a powerful story.
- 16:41SPEAKER_02: And I like I I didn't really know in that much detail like what you've gone through and all those sorts of things.
- 16:46SPEAKER_03: And I really hope that it just encourages others, like we absolutely have no idea what the person sitting opposite us is going through.
- 16:56SPEAKER_03: 100%.
- 16:56SPEAKER_03: Don't judge anyone.
- 16:57SPEAKER_03: You don't know what something's gonna be.
- 16:59SPEAKER_02: Well, just be kind, right?
- 17:00SPEAKER_02: Like, do you know what I mean?
- 17:01SPEAKER_02: And seriously, I I can't imagine not seeing you now, like do you know what I mean?
- 17:06SPEAKER_02: Like, I see you are you're really confident, you're very like you're openly talking about it.
- 17:10SPEAKER_02: Yeah, 100%.
- 17:11SPEAKER_00: Both of you, that kind of was another person.
- 17:14SPEAKER_05: Yeah, 100%.
- 17:16SPEAKER_05: And now I I mean, I think it was only really I'll tell you what's actually really helped with body image.
- 17:23SPEAKER_05: I had a horrendous body image because I was so thin.
- 17:26SPEAKER_05: Again, I was bullied by one person about my body image.
- 17:29SPEAKER_05: Yeah.
- 17:29SPEAKER_05: Always I hate this word, I was always told I was skinny.
- 17:32SPEAKER_05: You're so skinny, you're disgusting, you're so skinny.
- 17:34SPEAKER_05: So from a child I had a body image problem.
- 17:36SPEAKER_05: Oh my gosh.
- 17:37SPEAKER_05: And uh, but what helped me get over that body image is well, one since having a stoma because I put on more weight, I kept became a bit healthier.
- 17:46SPEAKER_05: And then it was doing the get-togethers where watching you and Jack that five odd years ago getting down to your boxes, and I was thinking, I can't do that now, but I'll do it the next year.
- 17:56SPEAKER_05: And it was doing it the next year, it was getting down to my boxes, and now, like I said before, I'd walk into a room now, camera crew, yeah, I'll get my kit off.
- 18:05SPEAKER_02: I remember even there half the time.
- 18:07SPEAKER_03: I actually remember you um you messed Jimmy after the get together, because that was the first time we uh really met.
- 18:14SPEAKER_03: And I remember you saying about um me and Jack being in the underwear, and I'm gonna do it next year.
- 18:20SPEAKER_03: And you did, you did it next year.
- 18:22SPEAKER_03: And absolutely fantastic.
- 18:24SPEAKER_05: Now I do since then or since certainly getting down to my boxes, yeah.
- 18:29SPEAKER_05: I now look at myself in the mirror and I like what I see.
- 18:32SPEAKER_05: That is brilliant.
- 18:32SPEAKER_05: That's so motivational.
- 18:34SPEAKER_02: Like that's that's so inspiring.
- 18:35SPEAKER_02: And now for people who don't know what the get togethers are, it's where you know, as ambassadors we get together and we you know show people our our stone bags, we do some some activities and things to help encourage others.
- 18:45SPEAKER_02: Yeah, yeah.
- 18:46SPEAKER_02: And I I've got to be honest, like the first time I think I was there with you one of the first times, and you were like, I'm not gonna do it.
- 18:53SPEAKER_02: And we were and then you've done it ever since.
- 18:55SPEAKER_02: And it's again, it's that that journey you've been on, it's been really, really inspiring.
- 19:00SPEAKER_05: Ben and Muller said I suffered depression, anxiety, social anxiety.
- 19:03SPEAKER_05: When I first went to the first get together, the fear I was going through on the drive down.
- 19:09SPEAKER_05: The fear of walking into that that hotel to meet people I've never met before.
- 19:14SPEAKER_05: Yeah, I mean, that was hugely out of my comfort zone.
- 19:17SPEAKER_05: Some idiothetic and soft getting it.
- 19:22SPEAKER_05: But how powerful that became for me and how helpful I still get social anxiety.
- 19:27SPEAKER_05: Every get together I've been to, I still get butterflies on route.
- 19:30SPEAKER_05: But it's helped me.
- 19:32SPEAKER_05: Yeah.
- 19:32SPEAKER_05: And it's helped me develop as a person.
- 19:33SPEAKER_02: It really has.
- 19:34SPEAKER_05: And again, like we said on the the first podcast, this is what we need to do to inspire more men.
- 19:40SPEAKER_03: This is exactly the right thing.
- 19:43SPEAKER_03: And to know that we we're actually inspiring each other.
- 19:45SPEAKER_03: Exactly.
- 19:46SPEAKER_03: And we all do this anyway, but we're actually inspiring each other in our everyday lives.
- 19:52SPEAKER_02: Well, I was gonna I was gonna actually ask you, Mo, because you've done one meetup, I think, and like you know, you've you you've told us about your start of your journey and very difficult like circumstances in terms of like different diagnosis to what we we've had.
- 20:06SPEAKER_02: Like, how is all of that affected with your mental health?
- 20:09SPEAKER_00: And um it's taken its toll.
- 20:11SPEAKER_00: So prior to cancer, um, I was actually best shape of my life.
- 20:19SPEAKER_00: My mental health was really good.
- 20:21SPEAKER_00: I was reading all those self-help books, um, exercising, trying to do all the right things, and I was comfortable in my own skin.
- 20:31SPEAKER_00: Yeah.
- 20:32SPEAKER_00: Um, which I hadn't been for for many years.
- 20:35SPEAKER_00: Um and I had a real kind of health kick for three years prior to the diagnosis.
- 20:41SPEAKER_00: Um and then COVID happened within that time.
- 20:50SPEAKER_00: My father passed away, and then a couple of months later I get the diagnosis of cancer, and I go through chemo, then emergency surgery, and then coming out of it.
- 21:03SPEAKER_00: Being diagnosed with chronic and severe nerve damage, now in a wheelchair to get around.
- 21:10SPEAKER_00: Um there's loads of things that happened all at the same time, which trying to process all of that huge it broke me.
- 21:22SPEAKER_00: It really did break me.
- 21:23SPEAKER_00: You know, I was grieving my uh father's death, I was grieving the old me.
- 21:30SPEAKER_00: I was trying to come to terms of who I am now, what that looks like in the future.
- 21:36SPEAKER_00: Um and I think the hardest bit was where I got the diagnosis and I'm about to tell my children that I've got cancer who've only just been introduced to the concept of death with their grandfather passing away, which they had a really close relationship to.
- 21:57SPEAKER_00: So that how do I tell 'em?
- 21:58SPEAKER_00: You know.
- 22:00SPEAKER_00: And the possibility that they might lose me because I was diagnosed with advanced cancer.
- 22:08SPEAKER_00: You know, with regards to chemo, they threw the kitchen sink at me.
- 22:12SPEAKER_00: Um and then when I came out of surgery, I was experiencing these shooting pains up and down my right leg.
- 22:23SPEAKER_00: I look to my left, and I've got this bag attached to my abdomen.
- 22:27SPEAKER_00: And I was like, when did that happen?
- 22:30SPEAKER_00: Yeah.
- 22:30SPEAKER_00: I no conscious knowing of that was gonna happen.
- 22:35SPEAKER_00: When we had that conversation, if it was gonna happen.
- 22:38SPEAKER_00: All I know is I was carted in the back of an ambulance, straight to surgery, and I just woke up in a room all by myself.
- 22:46SPEAKER_00: Um and the consultant trying to tell me, right, this has happened, this is what we do.
- 22:54SPEAKER_00: And within everything else that was spiraling in my head, his voice was just silence.
- 23:05SPEAKER_00: It's like white noise.
- 23:06SPEAKER_00: Yeah.
- 23:07SPEAKER_00: That's the only way I can describe it.
- 23:09SPEAKER_00: So I had the stoma nurses coming down to have a look at the bag and going, right, this is how you change it.
- 23:17SPEAKER_00: Um I had a urologist come in and looking at my leg to figure out what's going on there.
- 23:25SPEAKER_00: I had the physios trying to get me back on my feet.
- 23:29SPEAKER_00: Uh had the the nurses who were just washing me down, they just flipped me from one side to another uh on the bed.
- 23:37SPEAKER_00: Yeah.
- 23:38SPEAKER_00: Um and I did get to the point, same as you, where I was thinking, why am I even here?
- 23:46SPEAKER_00: You know, I am I am existing, I'm not living.
- 23:50SPEAKER_00: And um I used to watch like I'm an avid watcher of uh the bake-off.
- 23:58SPEAKER_00: Yeah, yeah, yeah.
- 23:59SPEAKER_00: And within the adverts they'll have the stand-up for cancer.
- 24:03SPEAKER_01: Yeah, yeah.
- 24:04SPEAKER_00: And I'll see these people and they'll be like GP Olympians and um boys and girls who are probably starting to to live their life, go to school, um and they've passed away.
- 24:22SPEAKER_01: Yeah.
- 24:23SPEAKER_00: And I'm thinking, well, they had more to live for than I did.
- 24:27SPEAKER_00: So why why don't I should be taking their place?
- 24:32SPEAKER_00: And I would say in my own head to go, I would give anything to swap.
- 24:37SPEAKER_01: Yeah.
- 24:38SPEAKER_00: So they could carry on living so I don't have to exist.
- 24:43SPEAKER_00: Um and it was difficult and I started pushing people away because I didn't really understand what was going on.
- 24:51SPEAKER_00: Um, my surgeon when he looked at when I told him about the pains I was experiencing uh in my leg, he was just saying, Oh, you'll just walk it off.
- 25:02SPEAKER_02: It can't be that flippant, surely.
- 25:05SPEAKER_00: He said, You're I've been told that you've been feeling a tickle in your feet and you'll just walk it off.
- 25:13SPEAKER_00: So I'll get the physios, they'll teach you how to get back on your feet and that I just couldn't, I couldn't bear any weight.
- 25:18SPEAKER_00: I said, I can't even feel my toes.
- 25:21SPEAKER_00: Um and it took a chance visit for a doctor who was um covering for my neurologist.
- 25:32SPEAKER_00: And he came up from London Queen's Hospital, um, like the centre of neurology, uh, and he goes, did some tests, just a physical examination, goes, I need to get you into London to figure out what's going on.
- 25:46SPEAKER_00: And it's only then as an inpatient, he said, Right, you've got severe nerve damage, there's damage during the surgery, I could see all this scarring in your abdomen, um and there's no resolution, you're just gonna have to put painkillers.
- 26:00SPEAKER_00: So I've been on, you know, oxycodin, gapapentin, duuloxetine, you know, opiates, painkillers, numbers, and they take a toll as well.
- 26:10SPEAKER_00: Yeah, 100%.
- 26:11SPEAKER_00: Um that's probably why you don't see me uh as much as before, because um it is really, really difficult just to kind of try and stay awake and stay present.
- 26:24SPEAKER_00: And even amongst family just talking about their day, you know, my vision will blur, get double vision, I'll start to get drowsy.
- 26:32SPEAKER_00: Um and I'm just trying my damnedest to concentrate and follow the conversation.
- 26:42SPEAKER_02: Um I've got I've gotta say like again, I'll I'll keep saying thank you because I cannot say like how important it is that you're all of you are chatting about this, like very openly.
- 26:52SPEAKER_02: Um your story is also just like inspiration a sense of where you are now.
- 27:00SPEAKER_02: Yeah.
- 27:00SPEAKER_02: You've gone through and like you're still battling things, we're all battling things.
- 27:03SPEAKER_02: But all of those things and where where you are now, like yeah, I can't like thank you all for genuinely chatting about this.
- 27:10SPEAKER_03: If you've struggled with your mental health?
- 27:12SPEAKER_02: Um not to be honest, probably not not as much.
- 27:17SPEAKER_02: Um I've always just gone with it as probably the honest way.
- 27:22SPEAKER_02: And even then, like, I don't know, uh health-wise, it's probably more that I I will probably think of it as I've I haven't had it as bad as others, so I won't talk about it as much, but it's more probably more my way of thinking about it.
- 27:36SPEAKER_02: Isn't that a way of hiding it?
- 27:38SPEAKER_02: Well, yeah.
- 27:38SPEAKER_02: And I I to be honest, I I probably haven't reflected enough on it.
- 27:42SPEAKER_02: I've probably moved too quickly through the motions to try and press on and get as positive and move things forward quickly rather than sort of dwelling on it, which is probably something I need to go away and work on, probably look at myself to be honest.
- 27:55SPEAKER_05: We already come across people and you say to them, Oh, how are you?
- 27:59SPEAKER_05: And because they might have something wrong, but they say, Oh, it's it's insignificant compared to what you've gone through, so but I don't need to talk, I won't talk about it.
- 28:07SPEAKER_05: Exactly.
- 28:08SPEAKER_05: No, talk because everything's relevant to the person.
- 28:11SPEAKER_02: I'm like, no, tell me about it.
- 28:12SPEAKER_02: Yeah, I'm asking about you.
- 28:13SPEAKER_02: I've ignored what I've said.
- 28:15SPEAKER_02: Exactly.
- 28:16SPEAKER_03: It m it matters, you know, it really matters how you are.
- 28:20SPEAKER_03: Exactly.
- 28:21SPEAKER_03: I'm not asking you because I went, as I say, you won a competition.
- 28:24SPEAKER_03: I want to know where you are.
- 28:26SPEAKER_03: Yeah, yeah.
- 28:26SPEAKER_03: And that's why I'm asking you.
- 28:28SPEAKER_03: Exactly.
- 28:29SPEAKER_02: I was gonna ask as well, because obviously we've all got bags here.
- 28:32SPEAKER_02: Bag bag bros, bag men, whatever.
- 28:35SPEAKER_02: Like, how did seeing a bag first time for you affect your mental health?
- 28:40SPEAKER_02: Because yours is was quite acute, right?
- 28:41SPEAKER_02: Yours was you had no idea.
- 28:43SPEAKER_04: Yeah.
- 28:44SPEAKER_02: I had I prepared, like I had a plastic fake bag on for ages, so I mentally was getting used to it.
- 28:49SPEAKER_02: What what was it like when you started to see a bag in and body wheels?
- 28:53SPEAKER_03: When I had my stoma, um I absolutely had no idea what an ostomy was.
- 28:59SPEAKER_03: Yeah.
- 28:59SPEAKER_03: Uh this, as I say, is in 2012.
- 29:02SPEAKER_03: Uh they did measure me up for my stoma, which was great.
- 29:06SPEAKER_03: They put a lovely big mark with a mark, a pen on me.
- 29:09SPEAKER_03: Uh Sharpies, there you go.
- 29:10SPEAKER_03: Sharpie, yeah.
- 29:11SPEAKER_02: Sharpies run, they sponsor like ostomies, don't you think?
- 29:14SPEAKER_03: Yeah, so it was great because I actually had it when I wanted it and it's worked out perfect.
- 29:18SPEAKER_03: Yeah.
- 29:19SPEAKER_03: Absolutely perfect.
- 29:20SPEAKER_03: So I had no idea what a stormer was.
- 29:23SPEAKER_03: Um I remember being given a choice.
- 29:25SPEAKER_03: I was given a choice to have um a stormer and have my rectum taken away.
- 29:33SPEAKER_03: My anus, sorry, taken away, and have um a not a Barbie butt, a Ken butt.
- 29:38SPEAKER_03: We're in a room of men, we're a Ken butt.
- 29:40SPEAKER_03: Or an Action Man butt whatever you want.
- 29:42SPEAKER_03: Action buttons.
- 29:43SPEAKER_03: Yeah.
- 29:43SPEAKER_03: But I remember being given the choice of that or um an internal pouch.
- 29:48SPEAKER_03: Yeah, yeah, okay.
- 29:49SPEAKER_03: Yeah.
- 29:50SPEAKER_03: I was given the two choices.
- 29:51SPEAKER_03: I knew absolutely nothing about either.
- 29:54SPEAKER_03: But when I was lucky, I was put in touch with um a lovely guy who had a clost me bag for about 40 years.
- 30:02SPEAKER_03: And I actually went to his house and sat with him and his wife and had a cup of tea, and we talked about him and his bag and how he had a fantastic life.
- 30:12SPEAKER_03: He worked on building sites, he went to the pub.
- 30:15SPEAKER_03: He just enjoyed life.
- 30:16SPEAKER_03: And then I talked to a guy who had one of these internal pouchers, and he just drunk shakes and didn't do much.
- 30:24SPEAKER_03: And I just went the bag, and that was it.
- 30:27SPEAKER_03: I had um one operation, thankfully, one recovery, and I've accepted my stoma from day one because I was so ill for those four days.
- 30:37SPEAKER_03: Yeah, actually, having the bag and being well, it just totally changed my life before anything else.
- 30:43SPEAKER_03: Yeah, and it brought the old Keith back because as you see me today, this has been me through my life.
- 30:50SPEAKER_03: I've always been positive, I've always been upbeat.
- 30:55SPEAKER_03: I think I invented selfish.
- 30:56SPEAKER_03: I invented the TikTok selfish.
- 30:57SPEAKER_03: Oh, right, yeah, definitely.
- 30:59SPEAKER_03: But yeah, this is this is me.
- 31:00SPEAKER_03: This is how I live my life every day.
- 31:02SPEAKER_03: It's not like an actor he's doing that just for social media.
- 31:06SPEAKER_03: This is me.
- 31:07SPEAKER_03: And then through those dark days, it wasn't me.
- 31:11SPEAKER_03: And then the bag enabled me to come back.
- 31:14SPEAKER_03: And that's also then helped with your the mental health starting, which you were saying earlier.
- 31:17SPEAKER_02: Absolutely, absolutely.
- 31:18SPEAKER_02: What about you guys then with with body image and bags and mental health?
- 31:22SPEAKER_05: Many years ago when I had my first surgery was uh a bowel resec surgery.
- 31:28SPEAKER_05: And I knew nothing about ostomies back then.
- 31:31SPEAKER_05: Uh and I had no idea, really.
- 31:33SPEAKER_05: I knew I knew the word colostomy, I knew it existed, I knew you know what it was, but I didn't really know much about them.
- 31:40SPEAKER_05: So when I went in for this surgery, when my surgeon said, We need to get you in into surgery ASAP, we need to open you up.
- 31:48SPEAKER_05: Uh and while they were doing, while she was talking me through it, a nurse was in drawing with the marker pen.
- 31:54SPEAKER_05: Yeah.
- 31:54SPEAKER_05: I said, What are you doing?
- 31:56SPEAKER_05: Why are you drawing that big black dot?
- 31:58SPEAKER_05: Join the dot.
- 31:59SPEAKER_05: She said, that's just where your stoma's gonna be if you have to have one.
- 32:02SPEAKER_05: I said, beg your pardon?
- 32:03SPEAKER_05: I said, What do you mean, a stoma?
- 32:05SPEAKER_05: I said, What's that?
- 32:06SPEAKER_05: Well, uh I didn't have the stoma at that that time.
- 32:10SPEAKER_05: And I was like, well, hang on a minute, what are you talking about?
- 32:12SPEAKER_05: What's a stoma?
- 32:12SPEAKER_05: They said, Oh, you'll have you might have to have a colostomy bag depending on how bad your intestines are.
- 32:18SPEAKER_05: Just in case.
- 32:19SPEAKER_05: I was in panic.
- 32:20SPEAKER_05: I was in sh absolute shock.
- 32:21SPEAKER_05: I was like, oh my god, I'm gonna have a colostomy.
- 32:24SPEAKER_05: I'm not ready for that.
- 32:25SPEAKER_05: Yeah.
- 32:26SPEAKER_05: I know nothing about these.
- 32:27SPEAKER_05: And this is what I think is really difficult for people that have it as an emergency.
- 32:30SPEAKER_05: Yeah, 100%.
- 32:31SPEAKER_05: Yeah.
- 32:31SPEAKER_05: So when I came around from that surgery, the first thing I did was put my hand down there.
- 32:35SPEAKER_05: I was like, oh, no bag, no bag.
- 32:37SPEAKER_05: Thank goodness.
- 32:39SPEAKER_05: But then years later, I'm like, give me a bag.
- 32:43SPEAKER_05: I I need a bag.
- 32:44SPEAKER_05: So waking up from surgery when I had I made the choice.
- 32:48SPEAKER_05: I said, I I want the colostomy.
- 32:50SPEAKER_05: I still put my hand down there.
- 32:51SPEAKER_05: It's like, oh, there's a oh, there is a bag there.
- 32:54SPEAKER_05: Yeah.
- 32:54SPEAKER_05: And I thought, I've asked for this.
- 32:55SPEAKER_05: Yeah.
- 32:56SPEAKER_05: Now I'm feeling it.
- 32:57SPEAKER_05: I'm not so sure.
- 32:58SPEAKER_05: So now I had a look.
- 32:59SPEAKER_05: I was like, okay.
- 33:00SPEAKER_05: And then it started working.
- 33:02SPEAKER_05: I was like, because they give you a clear bag.
- 33:03SPEAKER_05: Yeah, they're massive clear bags, aren't they?
- 33:06SPEAKER_02: Yeah.
- 33:06SPEAKER_02: Like rubbish bins are huge.
- 33:08SPEAKER_02: You're like, what's that?
- 33:09SPEAKER_05: And I was thinking, because this also fits in with the mental health side.
- 33:13SPEAKER_05: I was thinking, this is my last hope here.
- 33:16SPEAKER_05: Because if this doesn't work, what an awful choice this could have been.
- 33:20SPEAKER_05: Yeah.
- 33:21SPEAKER_05: Thankfully, it was the best decision I ever made.
- 33:22SPEAKER_05: And my surgeon, she said to me, When she came around and saw me, she said, That was the best decision you've ever made to have that.
- 33:29SPEAKER_05: She said, Because once we opened you up properly and we saw all your fistulas, she said, We were never going to stop those.
- 33:36SPEAKER_05: Wow.
- 33:36SPEAKER_05: She said, There was no way we could ever have got those under control.
- 33:40SPEAKER_05: Meant to be.
- 33:40SPEAKER_05: So she said, fistulas can still occur without I've even after having chem, but she said, but very unlikely.
- 33:47SPEAKER_05: I've never had one since.
- 33:49SPEAKER_05: So yeah, I chose to have it, but it was still a bit of a shock seeing it.
- 33:54SPEAKER_05: But then I I thought, right, I I've asked for this, I'm getting into this, and I'm gonna learn and I'm gonna do everything right.
- 34:00SPEAKER_05: And I said straight away, can I change the bag myself?
- 34:03SPEAKER_01: Yeah.
- 34:04SPEAKER_05: First one I said, I want to do that.
- 34:05SPEAKER_05: And I said, I want to touch it.
- 34:06SPEAKER_05: Yeah.
- 34:07SPEAKER_05: I want to know what it feels like.
- 34:08SPEAKER_05: I thought, I'm I'm all in on this.
- 34:10SPEAKER_05: Brilliant.
- 34:10SPEAKER_05: I I'm fully immersed into this.
- 34:13SPEAKER_05: Uh and thankfully it it it it was the best thing I ever did.
- 34:16SPEAKER_05: And again, that helped my mental health.
- 34:18SPEAKER_05: And again, that led me to wanting to help others and doing YouTube and meeting new guys.
- 34:23SPEAKER_05: It's like, yeah.
- 34:24SPEAKER_02: When you wake up after surgery and you see that though, like that's shocking because it like it's the size of a biscuit, it was huge, like it's big purpley thing.
- 34:31SPEAKER_02: I was like, no, I've seen ones online that are like can you come back and redo this?
- 34:37SPEAKER_02: Like it should be like strawberries are what it normally looks like.
- 34:40SPEAKER_02: And then that's that's that's that's big, right?
- 34:42SPEAKER_02: That's overwhelming.
- 34:43SPEAKER_02: And then like it'll calm down and you're like, why have you attached like a clear rubbish bag to me?
- 34:47SPEAKER_02: Like, why is there so much coming out of it?
- 34:50SPEAKER_02: And then you get neckache because you look down at it all day, and you're like, Wow.
- 34:54SPEAKER_02: What did I eat?
- 34:56SPEAKER_05: That's cool.
- 34:56SPEAKER_05: And then you watch it moving.
- 34:57SPEAKER_05: Yeah.
- 34:58SPEAKER_02: Yeah.
- 34:58SPEAKER_02: It's like it is fascinating.
- 35:00SPEAKER_02: It's hilarious.
- 35:01SPEAKER_02: I think it's funny.
- 35:02SPEAKER_02: How did you find yours?
- 35:03SPEAKER_02: Because you didn't elect for it.
- 35:04SPEAKER_02: It was it discussed?
- 35:06SPEAKER_02: Was it not discussed?
- 35:06SPEAKER_00: Like So when I was diagnosed, saw the consultant, and they spoke about you know, what we need to do, shrink the tumour, cut it away, and then reattach you.
- 35:20SPEAKER_00: Might you might need a bag, but possibility.
- 35:22SPEAKER_02: Yeah, okay, makes sense.
- 35:23SPEAKER_00: We'll cross that bridge if we come to it.
- 35:26SPEAKER_00: Um But that was the only time that really spoke about it.
- 35:33SPEAKER_00: I can't say whether it was spoken before surgery, because I had no idea.
- 35:38SPEAKER_00: Yeah.
- 35:39SPEAKER_00: I was just rushed in.
- 35:40SPEAKER_00: Um and I have to be honest, I hated it.
- 35:45SPEAKER_02: Really?
- 35:45SPEAKER_02: Yeah.
- 35:46SPEAKER_00: I despised my stoma because I just saw it, the noise that it would make, the the stench, the the ruffling of the plastic, um everything about it.
- 36:00SPEAKER_00: And I could see it uh because I used to wear quite tailored clothing.
- 36:04SPEAKER_00: And you could see it, it was obvious.
- 36:06SPEAKER_00: So I then bought a new wardrobe and everything was like loose and yeah.
- 36:11SPEAKER_00: Um and I put on an awful lot of weight because I wasn't I was off my feet.
- 36:18SPEAKER_00: Um and I was on these supplementary shakes.
- 36:22SPEAKER_00: Um they're awful then, aren't they?
- 36:24SPEAKER_00: Right.
- 36:25SPEAKER_00: Yeah, the calorification.
- 36:28SPEAKER_00: It tastes awful.
- 36:30SPEAKER_00: They do.
- 36:31SPEAKER_00: And I was on them for months.
- 36:34SPEAKER_00: Um and the idea was to just build up my strength.
- 36:39SPEAKER_00: Um and I just had constant leaks, irritation around it, and I would go back to my stominers and I'll explain it again and again and again, and there wasn't really any kind of resolution up until I saw uh Keith online and Mary Jane.
- 36:59SPEAKER_00: They spoke about respond.
- 37:00SPEAKER_00: Yeah.
- 37:01SPEAKER_00: And then I went through their portal rather than the one that was prescribed to me.
- 37:09SPEAKER_00: Um and then got introduced to different products, tried a couple of bags, I still do, um, and found the right one for me.
- 37:19SPEAKER_00: Yeah.
- 37:20SPEAKER_00: And suddenly that changed everything.
- 37:22SPEAKER_00: Okay.
- 37:22SPEAKER_00: Suddenly I became more confident about it, I was comfortable with it.
- 37:26SPEAKER_00: Um I still get the occasional league, but not as much because I'm using supplementary products.
- 37:33SPEAKER_00: Um and I'm in a good space now.
- 37:36SPEAKER_00: Um but the one thing that I do find very difficult is my body image.
- 37:42SPEAKER_00: Yeah.
- 37:43SPEAKER_00: Because whereas before I was fit, healthy.
- 37:47SPEAKER_00: And I I have to be honest, I've I often blame that maybe the I was too healthy, that maybe that caused the cancer.
- 37:57SPEAKER_00: And it's and I'm just I keep going back and forth going, what did I do before?
- 38:01SPEAKER_00: Well, I ate salads.
- 38:03SPEAKER_00: Okay, well, let's stick to pasta for a couple of months.
- 38:06SPEAKER_00: Um and I was doing interbit of fasting and those sort of things.
- 38:13SPEAKER_00: And I there's still that relationship where I keep thinking, right, did I cause it?
- 38:20SPEAKER_00: Was something done?
- 38:21SPEAKER_00: What was going on?
- 38:23SPEAKER_00: Um because when I asked my parents about, you know, was there any cancer in the family?
- 38:28SPEAKER_00: And they're like, mm, no, not that we know of, and it's like, what's the medical history in our family tree?
- 38:36SPEAKER_00: And it probably goes back to my granddad, and then after that there's just an unknown entity.
- 38:44SPEAKER_00: Because, you know, my family come from a little village up in the mountains of Kashmir, and you know, when they pass they say, Oh, well, that was God's decision, let's just put them in the ground, that's what we'll write down on the paper, it was his time or her time.
- 39:01SPEAKER_00: Uh, and that's it.
- 39:02SPEAKER_00: So you never really did an autopsy to kind of go, well, what caused it?
- 39:06SPEAKER_00: Why did they die?
- 39:06SPEAKER_00: What age?
- 39:07SPEAKER_00: And um so we had none of that.
- 39:10SPEAKER_00: So it's it's always difficult to kind of go, right.
- 39:16SPEAKER_00: What caused it?
- 39:17SPEAKER_00: I need to find some sort of relationship between it so I don't do it doesn't happen again.
- 39:22SPEAKER_00: But it's also putting that on my children now to go, right, they've got a fifty percent likelihood that they may get cancer.
- 39:28SPEAKER_00: And it's living with that guilt to go, well it came from me.
- 39:32SPEAKER_00: I gave that to them.
- 39:34SPEAKER_00: And there's you know, I've got two children, so likelihood is one will get it, if not both.
- 39:40SPEAKER_00: Um and that's the thing I really, really struggle with.
- 39:45SPEAKER_02: Look, thank you for opening up with that.
- 39:46SPEAKER_02: Like that's that must be quite a lot for you to actually have to deal with like constantly day-to-day as well.
- 39:51SPEAKER_02: On top of everything else that that's what I really push for.
- 39:53SPEAKER_00: Like when I look at you know, finding people like me, no, from an ethnic minority, to go, where are these people?
- 40:02SPEAKER_00: Where is the information?
- 40:03SPEAKER_00: Where is the focus groups, the surveys, the NHS?
- 40:08SPEAKER_02: Um Do you feel like you're getting that help?
- 40:11SPEAKER_00: Like, really, I think it's still an unknown entity.
- 40:15SPEAKER_00: Um I think it it it's two parts really from the research that I've done.
- 40:20SPEAKER_00: I think it's the community coming forward uh and the the NHS meeting them and going, right, let's do some surveys, let's do some screenings, let's really get into those communities.
- 40:35SPEAKER_00: But they have tried, but people don't want to come forward because there's still that stigma to go, oh, you know, if you fall ill, then whatever that illness is is contagious.
- 40:47SPEAKER_00: It's yeah, 100%.
- 40:48SPEAKER_00: Some dark forces coming.
- 40:52SPEAKER_02: Well also it'll be it might even be people's mental health side of things.
- 40:54SPEAKER_02: I don't want to talk about it because I'm not well enough like mentally in myself to actually open up and talk about it.
- 41:00SPEAKER_02: I was gonna one thing I did ask, because again, with all this, you've all gone and through incredible journeys.
- 41:06SPEAKER_02: We all have, and you've all said like points where you've then started to open up.
- 41:11SPEAKER_02: Was there any men that you actually connected with who helped inspire you to have that conversation?
- 41:18SPEAKER_03: I did in the early days, um, and I mean in the early days, I think there was Facebook, possibly Twitter.
- 41:24SPEAKER_03: Excellent.
- 41:25SPEAKER_03: Exnell and um Instagram.
- 41:28SPEAKER_03: I did follow one guy, uh Blake Beckford.
- 41:32SPEAKER_03: Yes, yeah, yeah, yes, good.
- 41:34SPEAKER_03: Uh he was the only one that I sort of saw who had a stoma and um he was a bodybuilder and amazing guy.
- 41:41SPEAKER_03: And uh yeah, I've followed him ever since, and he just gave me that thing.
- 41:46SPEAKER_03: Oh, do you know what?
- 41:48SPEAKER_03: We can do good.
- 41:49SPEAKER_03: We can do good.
- 41:50SPEAKER_03: I've got my stoma, I've got my platform, we can turn this into something.
- 41:54SPEAKER_01: Yeah.
- 41:55SPEAKER_03: And it was it was actually everything started with me sharing my story because I remember um Pelican Healthcare putting on I think it was on um Instagram, we want real life stories.
- 42:08SPEAKER_03: Yeah, 100%.
- 42:09SPEAKER_03: And I shared my real life story in and poof, just went from there.
- 42:12SPEAKER_03: Yeah, I'm where I am today.
- 42:14SPEAKER_02: What a story.
- 42:15SPEAKER_02: I I had um it's limited, right?
- 42:18SPEAKER_02: Like there's there's limited men out there.
- 42:20SPEAKER_02: I remember uh a guy called uh I'm gonna still chat to remember a guy called Moed, another Mo.
- 42:25SPEAKER_02: Oh yeah, um I'll put him in contact with you.
- 42:27SPEAKER_02: I'll try to.
- 42:28SPEAKER_02: Um lovely guy.
- 42:29SPEAKER_02: He is fantastic, he has a bag, and I remember because I had IBD for so long.
- 42:34SPEAKER_02: There's there was a few people I'd followed like who who had IBD, but I was like, what's the best thing?
- 42:39SPEAKER_02: Should I get a bag, should I not?
- 42:40SPEAKER_02: And he encouraged me, he's like, it's the best thing you'll do.
- 42:42SPEAKER_02: And that was something I found really interesting.
- 42:45SPEAKER_02: Um, and he was one guy, and then everyone else was women, like there's a few other very inspirational people.
- 42:52SPEAKER_02: But I remember sitting there going through my social media being like, There's just girls in bikinis, I'm gonna get in trouble here.
- 42:57SPEAKER_02: Like I can't I can't keep looking at these.
- 43:00SPEAKER_02: My algorithm's gonna be like, here's another, here's another.
- 43:02SPEAKER_02: But yeah, but did you guys chat with any men or anything like that?
- 43:06SPEAKER_05: No, I I didn't.
- 43:07SPEAKER_05: Uh I had I've got two really close male friends uh that have always been supportive uh for all the the the years.
- 43:16SPEAKER_05: I didn't always share with them my mental health, but they went through the journeys of me constantly booing myself and and we'd get through it with humour.
- 43:24SPEAKER_05: Uh and they were always supportive, and they all they always knew there was something wrong with me, so they were always supportive.
- 43:29SPEAKER_05: But when it came to research in life with a stoma, I I did go on the socials, uh YouTube uh and Instagram, but I never actually made contact with anybody.
- 43:39SPEAKER_05: And this this sounds harsh, but it's not meant to be this way.
- 43:42SPEAKER_05: I didn't find them inspirational because I thought it wasn't what I was looking for, I was looking for information.
- 43:46SPEAKER_05: Yeah, I wanted facts, I wanted answers to my questions about life with a a stoma.
- 43:53SPEAKER_05: So that's why I used looked for men, but like you say, you get a lot of girls, uh women on social.
- 44:00SPEAKER_05: Media, it's flooded, there's not enough men.
- 44:02SPEAKER_05: So I was listening to the female's point of view as well.
- 44:05SPEAKER_05: I thought it's always good to get the ladies' version.
- 44:08SPEAKER_05: Um but it wasn't until I really started my own YouTube channel that I then started contacting other men.
- 44:16SPEAKER_05: And then finding them into the channel.
- 44:18SPEAKER_05: But did they come to you or did you some did?
- 44:20SPEAKER_05: Yeah, some did.
- 44:21SPEAKER_05: Some came to me and said, Like, what are you doing?
- 44:23SPEAKER_05: Do you want to do something together?
- 44:24SPEAKER_05: And then that's when I started thinking, oh, these people are inspirational.
- 44:28SPEAKER_05: Yeah.
- 44:29SPEAKER_05: Because before I was just using them as an information point to get myself some facts.
- 44:34SPEAKER_05: So yeah, I didn't use other men until I was quite happy with it.
- 44:37SPEAKER_05: And I was like, now I'm gonna go and look for them because I've got a different reason to look for them because I'm out there doing the socials myself.
- 44:44SPEAKER_05: I want to chat with other men that are doing it.
- 44:46SPEAKER_05: So yeah, I kind of used it a different way around, really.
- 44:50SPEAKER_02: Yeah, well, it makes perfect sense.
- 44:51SPEAKER_02: Again, I we've said in the last like a couple of podcasts, process driven, I need to find answers and stuff like that.
- 44:57SPEAKER_02: From you and your your side of things, did you?
- 44:59SPEAKER_00: I saw Keith.
- 44:59SPEAKER_00: I saw him on Instagram and I was like, that's where I want to be.
- 45:04SPEAKER_00: You know, someone that's comfortable in their body.
- 45:06SPEAKER_03: Oh, that's lovely.
- 45:07SPEAKER_03: Um you actually contacted me, didn't you?
- 45:09SPEAKER_03: Yeah, I didn't know.
- 45:10SPEAKER_03: You contact me about you coming to the your first get then.
- 45:14SPEAKER_03: Yeah, I reached out to respond and they invited me to.
- 45:16SPEAKER_03: And you asked me what was it really like and and then I actually met you.
- 45:20SPEAKER_03: It was amazing.
- 45:21SPEAKER_03: Absolutely amazing.
- 45:22SPEAKER_03: It was.
- 45:22SPEAKER_03: Keith was the catalyst.
- 45:24SPEAKER_03: Keith was.
- 45:25SPEAKER_00: And he still is.
- 45:26SPEAKER_00: Oh stuff, it were all well.
- 45:30SPEAKER_00: But there wasn't really anyone else, though I feel that I kind of looked at it.
- 45:36SPEAKER_00: I didn't know of anyone else because Keith was at portal and I kind of used Yeah, yeah.
- 45:42SPEAKER_03: It's so it's so fantastic that that just means that what are you doing works.
- 45:48SPEAKER_03: Yeah.
- 45:49SPEAKER_02: Like we d you're not starting your Instagram on your social media to for monetary value.
- 45:54SPEAKER_02: It's that one person you help, right?
- 45:55SPEAKER_02: But we've become we've become a little family, haven't we?
- 45:58SPEAKER_05: We've become friends.
- 45:59SPEAKER_05: Yeah, 100%.
- 46:00SPEAKER_03: We know we can just message each other about anything.
- 46:02SPEAKER_05: And that's what people should do.
- 46:04SPEAKER_05: Just you know, I've always said message me.
- 46:06SPEAKER_05: And you know, same with Kev, who's not here today, we should be here.
- 46:11SPEAKER_05: You know, I reach out to Kev and certainly reaching out to him at the moment because he's unwell.
- 46:15SPEAKER_05: Uh so yeah, miss you, Kev.
- 46:17SPEAKER_05: But isn't it amazing that how we've all come together.
- 46:20SPEAKER_05: It is.
- 46:20SPEAKER_05: And we can just we know we might not speak for months, but we can text each other and say, I'm having a bit of a rough time or whatever, and you know that support's there.
- 46:28SPEAKER_03: I always remember one of my mates saying that.
- 46:30SPEAKER_03: We actually work together, and then I went to his house and I hadn't seen him for like about two or three years.
- 46:35SPEAKER_03: I just walked in and he put the kettle on and we're having a cup of tea, and it's like we saw each other yesterday.
- 46:40SPEAKER_03: You know?
- 46:41SPEAKER_05: And that's what we're like every year, aren't we?
- 46:43SPEAKER_05: When we get together, it's like we only saw each other the day before.
- 46:46SPEAKER_05: We're ostel mates.
- 46:48SPEAKER_05: I love it.
- 46:49SPEAKER_02: Great pump.
- 46:50SPEAKER_02: Well, I was gonna do you know, I'm gonna ask one question before we sort of round this all off.
- 46:53SPEAKER_02: Yeah.
- 46:54SPEAKER_02: If you could look back and you could tell your younger self before we had you said, or whilst you're having your diagnosis, etc., what one piece of advice would you give that person to because you could see where you are now.
- 47:06SPEAKER_03: If you're gonna reflect back.
- 47:07SPEAKER_03: If I could look back and see where I am now, I'm gonna say it's going to be absolutely amazing.
- 47:13SPEAKER_03: Just be you, do you.
- 47:15SPEAKER_03: But don't keep things to yourself.
- 47:17SPEAKER_03: Involve others.
- 47:19SPEAKER_03: The help is out there, involve others.
- 47:22SPEAKER_05: Yeah, it's quite difficult because I look back and my life was quite tough.
- 47:30SPEAKER_05: So to give I I don't think I could give myself one bit of advice.
- 47:33SPEAKER_05: There'd have to be a a a book of advice to give myself.
- 47:38SPEAKER_05: Would you title it then?
- 47:39SPEAKER_05: Oh, who knows?
- 47:40SPEAKER_05: But yeah, there's so much advice.
- 47:42SPEAKER_05: I'd love to go back and say, Chris, do this now.
- 47:46SPEAKER_05: Don't accept that from that person, push on with that, be you, make your own steps forward, stop listening to the people that are trying to bring you down and just move away from them.
- 47:57SPEAKER_05: It took me years to cut that person out of my life.
- 48:00SPEAKER_05: Yeah, and there were others, uh, but but cutting that person out of my life was a huge thing for me.
- 48:06SPEAKER_05: Yeah.
- 48:06SPEAKER_05: Nobody needs negativity.
- 48:08SPEAKER_03: No, no, positivity breeds positivity 100%.
- 48:11SPEAKER_03: Yeah.
- 48:11SPEAKER_05: Push on, be able to do you get where you want to go.
- 48:15SPEAKER_05: That's fantastic.
- 48:18SPEAKER_00: Um I'm a firm believer that there are things that happen to you and they're there to teach you something.
- 48:27SPEAKER_00: 100% and that's you need to find what that lesson is.
- 48:32SPEAKER_01: Yeah.
- 48:33SPEAKER_00: Um and I would also what I would recommend people doing is putting yourself out there.
- 48:39SPEAKER_00: Because by showing the true you and offering yourself up in terms of a vulnerability uh side of things, it it opens doors.
- 48:53SPEAKER_00: You you shouldn't shy away from just because you can't see someone that represents you in any way, once you put yourself out there, you become an inspiration, you become that Paul Torse Keith was to me.
- 49:07SPEAKER_00: Um and just keep going.
- 49:09SPEAKER_00: Yeah.
- 49:10SPEAKER_00: Keep going.
- 49:11SPEAKER_02: I I I like guys, honestly, seriously it's it's you've hit all the nails on the head.
- 49:15SPEAKER_02: I think the only other thing with it is from my side, is like you're in this bit now, but that won't last forever.
- 49:22SPEAKER_02: Yeah.
- 49:23SPEAKER_02: Like it's temporary.
- 49:25SPEAKER_02: And I think that's why with everything you've all shared today, like the real stories you've said about, you know, suicidal thoughts, ideations, and to where you are now, like that's so empowering.
- 49:37SPEAKER_02: Because in other podcasts where we've talked about it, four out of five men, I think you said, like, are thinking that.
- 49:41SPEAKER_02: Like some individuals maybe listen to it now in that space and see you both or uslot and go, oh, I actually it may it's not going to end that way.
- 49:51SPEAKER_02: It could end like this.
- 49:52SPEAKER_02: I could go and do this.
- 49:54SPEAKER_02: But the first step is I need to just have a conversation.
- 49:57SPEAKER_02: Contact us.
- 49:57SPEAKER_02: Please contact us.
- 49:58SPEAKER_02: Yeah, you know.
- 49:59SPEAKER_02: Just talk up about it.
- 50:00SPEAKER_02: Not on your own contact.
- 50:01SPEAKER_02: Yes, please.
- 50:02SPEAKER_02: 100%.
- 50:02SPEAKER_03: And we're all open to that, aren't we?
- 50:04SPEAKER_02: Oh, yeah, it's a contact.
- 50:06SPEAKER_02: Yeah, we don't just say it, we meet.
- 50:08SPEAKER_02: I was chatting to somebody the other day and I had to use Google Translate, but I was trying my best to like, you know, help them out.
- 50:13SPEAKER_05: But then just before we wrap up, just want to go back to something you said earlier, Mo about not wanting to exist and myself being suicidal.
- 50:21SPEAKER_05: That's a really dark place, isn't it?
- 50:22SPEAKER_05: Yeah.
- 50:23SPEAKER_05: And it's it's a real horrible place to be.
- 50:25SPEAKER_05: It's so dark.
- 50:27SPEAKER_00: You feel you're on a ledge and it could tip either way.
- 50:31SPEAKER_00: Yeah.
- 50:32SPEAKER_00: Um.
- 50:33SPEAKER_00: And you're just looking for something to to kind of topper you.
- 50:39SPEAKER_00: Yeah.
- 50:39SPEAKER_00: Yeah.
- 50:40SPEAKER_05: That's alright.
- 50:41SPEAKER_05: So when you're in that dark place, talk.
- 50:44SPEAKER_05: Yeah.
- 50:45SPEAKER_02: I'm so grateful that you both have.
- 50:47SPEAKER_02: Like really, really have.
- 50:48SPEAKER_02: And you've said everything that you have today, because I really hope that'll inspire and help so many others.
- 50:53SPEAKER_03: I've never heard anybody talk about feeling like that about themselves.
- 50:57SPEAKER_03: I know it goes on, but I've never actually talked to anyone or you heard somebody say it.
- 51:01SPEAKER_03: To hear you both, you're so brave to hear you say it, talk about it.
- 51:05SPEAKER_03: It's it's amazing.
- 51:06SPEAKER_02: You've done a fan, honestly, it's yeah.
- 51:08SPEAKER_02: It's it's yeah, incredible.
- 51:11SPEAKER_02: So thank you so much.
- 51:12SPEAKER_02: Thank you.
- 51:13SPEAKER_02: Yeah, thank you all.
- 51:13SPEAKER_02: So, yeah, that's to be honest, that's gonna probably end our podcast today.
- 51:16SPEAKER_02: Thank you both, well, all of us, I should say, for being here.
- 51:20SPEAKER_02: Again, with all of this, like with stomas, IBDs, all these bits, it's not just the physical side, I think it's the mental side.
- 51:26SPEAKER_02: So, one takeaway for anyone listening to this is just start that conversation, reach out, and then that will start that journey to getting the help you need.
- 51:34SPEAKER_02: So, yeah.
- 51:35SPEAKER_02: Thanks so much, everyone.
- 51:36SPEAKER_02: Thank you.
- 51:37SPEAKER_02: Look forward to seeing you on the next podcast.
- 51:38SPEAKER_02: We'll see you soon.
- 51:39SPEAKER_02: Can't wait.
- 51:39SPEAKER_02: Take care.