Latest / Beyond the Pouch / E4: Ant's Ulcerative Colitis Story & Greatest Moments with a Stoma

Transcript

E4: Ant's Ulcerative Colitis Story & Greatest Moments with a Stoma · Beyond the Pouch

• 0:00
  SPEAKER_00: 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_01: Welcome back for another episode of Beyond the Pouch.
• 0:22
  SPEAKER_01: If you haven't already listened to the previous episodes, head over to YouTube and Spotify to give us a listen and a watch.
• 0:28
  SPEAKER_01: So today we're very excited to have someone for Will Dostomy Day that is actually more of a friend than anything else.
• 0:41
  SPEAKER_01: We're going to discuss your greatest moments with a stoma.
• 0:44
  SPEAKER_01: So thank you for joining us.
• 0:45
  SPEAKER_04: Absolute pleasure.
• 0:46
  SPEAKER_04: Thank you so much for having me.
• 0:47
  SPEAKER_04: Honestly, it's been, you know, such a privilege, not just being here, but listening to you guys talk to so many great people.
• 0:54
  SPEAKER_04: Hearing your inspiring stories, hearing other people's inspiring stories.
• 0:57
  SPEAKER_01: Well, you're part of that, and we've been working with you for quite a while now.
• 1:00
  SPEAKER_01: Like we've built a professional relationship.
• 1:02
  SPEAKER_01: We have built a professional relationship.
• 1:04
  SPEAKER_01: It's not the first podcast I've done with you.
• 1:06
  SPEAKER_04: No, it's not.
• 1:06
  SPEAKER_04: No, it isn't.
• 1:07
  SPEAKER_04: It isn't.
• 1:08
  SPEAKER_01: Well, you two should be uh find this and get about.
• 1:14
  SPEAKER_01: But yeah, you've got quite a you've got a unique story yourself, and you've got quite a big presence online.
• 1:20
  SPEAKER_01: You do a lot for raising awareness, so it'd be good to Oh, you're making me go red, honestly.
• 1:25
  SPEAKER_04: I could be here all day, I love this.
• 1:28
  SPEAKER_04: We just need distant.
• 1:28
  SPEAKER_04: I need to deflate my ego, not inflate it.
• 1:32
  SPEAKER_01: So let us know about your diagnosis.
• 1:34
  SPEAKER_01: Where do we begin?
• 1:37
  SPEAKER_04: So uh oh gosh, Kashmayer's back to 2008 when uh people mainly use Facebook, Instagram was in its infancy, TikTok was just the noise the clock made in the corner.
• 1:48
  SPEAKER_04: And uh yeah, I was uh uh uh at university in Canterbury.
• 1:53
  SPEAKER_04: Uh just started.
• 1:55
  SPEAKER_04: Uh so yeah, got into Freshers Week.
• 1:57
  SPEAKER_04: And for anyone who doesn't know what Freshers Week is, it's supposed to be a week of mingling and making new friends in a new environment.
• 2:03
  SPEAKER_04: And the reality is It's a big old beano.
• 2:05
  SPEAKER_04: It's a it's a big drinking, partying week non-stop.
• 2:10
  SPEAKER_04: Um so yeah, uh, if there are any you know mums and dads who are listening, those uh students are gone to uni and gone.
• 2:16
  SPEAKER_04: Oh, it's only quiet, it's a lie.
• 2:18
  SPEAKER_04: Oh, that's a lie, it's a complete.
• 2:20
  SPEAKER_01: You'll never know what actually happens.
• 2:22
  SPEAKER_04: Yeah, exactly.
• 2:23
  SPEAKER_04: I'll tell you what they want to tell you.
• 2:24
  SPEAKER_04: Um but yeah, after you know, first couple of weeks of uni, everything was alright.
• 2:29
  SPEAKER_04: Um, and then just started getting really, really bad diarrhea.
• 2:33
  SPEAKER_04: And I assumed, right, it's just too much drinking, too many late nights, too many kebabs, yeah, and then eating the food again in the morning and then going to your lectures.
• 2:43
  SPEAKER_04: So I went to um the on-site uh pharmacist doctors, told them everything.
• 2:48
  SPEAKER_04: Here's some Immodium, that should work.
• 2:51
  SPEAKER_04: Did that for a couple of weeks, but nothing really changed.
• 2:55
  SPEAKER_04: Went back and they said, Okay, uh, let's start doing some tests.
• 3:00
  SPEAKER_04: Um, and the tests uh they're great fun, aren't they?
• 3:03
  SPEAKER_04: Here's a here is a small cardboard box that we need to take a sample from.
• 3:06
  SPEAKER_04: Can you can you do this please?
• 3:08
  SPEAKER_01: Yeah.
• 3:09
  SPEAKER_04: And you're like, I don't I'll be honest with you.
• 3:11
  SPEAKER_04: I mean, I could I'll speak freaking.
• 3:12
  SPEAKER_04: It's like, how am I gonna actually get the sample?
• 3:15
  SPEAKER_04: Like, I just don't get it.
• 3:16
  SPEAKER_01: So yeah, they never ta they never offer a suggestion, do they?
• 3:19
  SPEAKER_01: They kind of give you the tools and say free.
• 3:23
  SPEAKER_04: Here's the blue big scoop.
• 3:25
  SPEAKER_04: Well, right, fine.
• 3:26
  SPEAKER_00: I have loads of those in my medicine drawer.
• 3:30
  SPEAKER_00: The last time I had a UTI, I had to drop in a urine sample, so I used the pot that I normally do my fecal cow protecting the car and dropped it into a GP.
• 3:40
  SPEAKER_01: Oh lovely.
• 3:40
  SPEAKER_01: I mean, aren't they throwaway?
• 3:42
  SPEAKER_01: Single use?
• 3:44
  SPEAKER_01: Yeah, but I it should be recyclable, no.
• 3:48
  SPEAKER_00: Well, technically they're plastic, so they could be.
• 3:50
  SPEAKER_04: Yeah.
• 3:51
  SPEAKER_00: Oh yeah, oh no.
• 3:52
  SPEAKER_04: But yeah, no, did did all that.
• 3:54
  SPEAKER_04: Um everything comes back as normal, which is great.
• 3:57
  SPEAKER_04: It's exactly what you want to hear.
• 3:58
  SPEAKER_04: And you literally sit there and you sort of plead with the doctors going, I'm passing blood out of my bum.
• 4:03
  SPEAKER_04: I don't understand how that's normal.
• 4:04
  SPEAKER_04: And they go, well, everything's in normal range.
• 4:06
  SPEAKER_04: Um yeah, all right.
• 4:07
  SPEAKER_04: So then it was a good sort of, you know, about six months of just hoping for the best, trying everything under the sun.
• 4:13
  SPEAKER_01: How were you dealing with university in that time?
• 4:16
  SPEAKER_04: To be honest, um I just sort of you know, I was just sort of speaking to people about it, being like, I need to go to the toilet.
• 4:23
  SPEAKER_04: Yeah.
• 4:24
  SPEAKER_04: Sorry.
• 4:24
  SPEAKER_04: And then you have to run out of lectures or you have to uh, you know, go or ever just try and locate where the nearest toilets are.
• 4:30
  SPEAKER_01: You know, important time, you're in new social circumstances.
• 4:33
  SPEAKER_01: That is not the time you want to be dealing with such symptoms, is it?
• 4:36
  SPEAKER_04: No, no, no, not at all.
• 4:38
  SPEAKER_00: Do you feel though it's eas easier as a man to say oh and pop into the toilet than what it is maybe for the female counterpart maybe?
• 4:45
  SPEAKER_04: I don't know.
• 4:46
  SPEAKER_00: Bloke Bantal.
• 4:47
  SPEAKER_00: Yeah.
• 4:49
  SPEAKER_04: I I've never said oh I'm gonna go and you know, poo for like 25 minutes, then come back and then go again.
• 4:53
  SPEAKER_04: I just said I just need to go to the loo.
• 4:54
  SPEAKER_04: But I I I don't really know to be fair.
• 4:56
  SPEAKER_04: Yeah.
• 4:57
  SPEAKER_04: Um But it was more um when I went home after Christmas when I was told my parents all about it.
• 5:04
  SPEAKER_04: And I said to my dad and my mum, like, I'm going to talk like eight times a day.
• 5:08
  SPEAKER_04: My dad was like, Yeah, I do.
• 5:09
  SPEAKER_04: And I was like, no, dad, I'm uh this is what I'm doing.
• 5:12
  SPEAKER_04: And he was like, Oh, right.
• 5:14
  SPEAKER_04: Uh okay, go and let's see what we can do.
• 5:18
  SPEAKER_04: Maybe we could go private.
• 5:19
  SPEAKER_04: So um booked in a consultation with uh uh very nice uh old um doctor, really friendly, really, really kind.
• 5:29
  SPEAKER_04: Because obviously, when you go, like the first time you speak to a doctor about what's going on, you feel embarrassed, nervous, you know, and obviously they're gonna be you know polite, professional, etc.
• 5:39
  SPEAKER_04: But he was like, Yeah, it's absolutely fine.
• 5:40
  SPEAKER_04: This is my specialty.
• 5:41
  SPEAKER_04: Don't worry, we'll get you all sorted.
• 5:43
  SPEAKER_04: Tell me what's going on.
• 5:45
  SPEAKER_04: Great.
• 5:45
  SPEAKER_04: I'll tell you what, tomorrow we'll book you a columnoscope in, which will be this sort of scope.
• 5:49
  SPEAKER_04: Do this, this, and this.
• 5:50
  SPEAKER_04: You'll have to drink all of the prep.
• 5:52
  SPEAKER_04: Yeah.
• 5:53
  SPEAKER_04: Which is wonderful.
• 5:54
  SPEAKER_04: Oh, it's awful.
• 5:55
  SPEAKER_04: Honestly, I wouldn't, you know, I wouldn't wish that on anyone.
• 5:57
  SPEAKER_04: Um, and then yeah, uh, I remember it quite well because I had to explain to my mate, my mum and dad were working and I wasn't driving.
• 6:05
  SPEAKER_04: So I said to my mate, I need to take uh, can you take me to the hospital?
• 6:09
  SPEAKER_04: And he was like, Yeah, I can do.
• 6:10
  SPEAKER_04: Why?
• 6:10
  SPEAKER_04: And I was like, Well, long story short, I'm pooing all the time.
• 6:13
  SPEAKER_04: I'm now gonna get a test to actually see what's happening.
• 6:16
  SPEAKER_04: So do you mind taking me?
• 6:18
  SPEAKER_04: He's like, Yeah, it's fine.
• 6:19
  SPEAKER_04: It's like I'm gonna be on laxatives, so you're gonna have to drive quickly.
• 6:23
  SPEAKER_04: Yeah, and you know, if you get stopped by police, it's fine, it's an emergency, or I'll just, you know, it'll just go everywhere, so it doesn't matter.
• 6:28
  SPEAKER_02: Yeah, yeah, yeah.
• 6:29
  SPEAKER_04: And I've got into you know, they show you into your room in a private suite, which is really nice, whatever.
• 6:33
  SPEAKER_04: I went into the toilet as the world is falling out of my bum, the doctor walks in and he's like, Are you you're not Anthony?
• 6:42
  SPEAKER_04: And my mate's like, no, he's in there.
• 6:44
  SPEAKER_04: And I'm like, hello.
• 6:48
  SPEAKER_01: So uh you couldn't make it up, could you?
• 6:50
  SPEAKER_04: Oh no.
• 6:51
  SPEAKER_01: But the relief euphoric, innit?
• 6:54
  SPEAKER_04: I mean, that in itself is a afterburn's not great there, I'm not gonna lie to you.
• 6:59
  SPEAKER_00: Can you remember which Can you remember which one it was?
• 7:04
  SPEAKER_00: Because the citroflate has a rather long lasting after effect.
• 7:08
  SPEAKER_04: A cut.
• 7:09
  SPEAKER_04: It was lemony.
• 7:10
  SPEAKER_04: I just remember it being lemony.
• 7:13
  SPEAKER_00: Over here there's like three different brands of um the expelling laxatives to clear the bowels.
• 7:20
  SPEAKER_02: Yeah.
• 7:20
  SPEAKER_00: You got movie prep, you've got citroflate, and there's another one.
• 7:24
  SPEAKER_00: Most of them stopped doing the citroflate because that stuff's brutal.
• 7:28
  SPEAKER_04: It might have been that, I don't know.
• 7:29
  SPEAKER_00: Because it's both ends with that one.
• 7:30
  SPEAKER_00: That that that clears you up both both top and bottom.
• 7:33
  SPEAKER_04: But yeah, it was uh But I was diagnosed in the day.
• 7:36
  SPEAKER_04: And then you said, here you go.
• 7:37
  SPEAKER_04: Um you've got ulceratic colitis, this is what it looks like, here's your camp.
• 7:41
  SPEAKER_04: We'll send you all the footage if you want it.
• 7:44
  SPEAKER_04: And when you're like 18, 19, you're like, great, so what's that?
• 7:48
  SPEAKER_04: I have no idea.
• 7:49
  SPEAKER_04: So here you go.
• 7:50
  SPEAKER_04: So we're gonna put you on some steroids, we're gonna put you on some very low-level sort of medication like misalazine family stuff.
• 7:57
  SPEAKER_04: Um, and then you should be right as rain.
• 7:59
  SPEAKER_01: Oh, what a claim.
• 8:00
  SPEAKER_04: Well, when you're 19, I've got to be honest, like no one explained to me what this was.
• 8:06
  SPEAKER_04: No one sort of obviously when I was there, they're explaining it, but you just take it on board, like, yeah, cool.
• 8:11
  SPEAKER_01: So Well, you're grateful for a word for it and being validated, aren't you, for starters, because you were told just take an old GM, nothing's wrong with you, which is horrendous.
• 8:20
  SPEAKER_01: Yeah.
• 8:21
  SPEAKER_04: And then you just sort of, you know, you sort of go, okay, great.
• 8:24
  SPEAKER_04: And then you don't think long term because you're not thinking long term.
• 8:27
  SPEAKER_04: You're 19.
• 8:27
  SPEAKER_04: No.
• 8:28
  SPEAKER_04: Do you know what I mean?
• 8:28
  SPEAKER_04: No, no.
• 8:29
  SPEAKER_00: You tend to stick your head in the sand at that age as well.
• 8:32
  SPEAKER_04: Well, I was very open with it because I went to the really good thing was with my university, um, I went to speak to them about it, and they said, Your class is disabled.
• 8:41
  SPEAKER_04: So we're going to offer you all of this support.
• 8:43
  SPEAKER_04: So you can come and speak to a therapist, we can you know, you can work from you can do university at home, you can have a chair, new laptop, all these sorts of bits and pieces.
• 8:52
  SPEAKER_04: I was like, Yeah, okay, if if that's what's available, I'll I'll have it.
• 8:55
  SPEAKER_04: So they really laid it on.
• 8:56
  SPEAKER_04: I was like, this is this is great.
• 8:58
  SPEAKER_04: But I felt a bit like a fraud because I well, I'm I look young and healthy.
• 9:04
  SPEAKER_04: So you keep calling me a young man, it's very kind of you.
• 9:06
  SPEAKER_04: So I'll buy a drink after, it's fine.
• 9:08
  SPEAKER_04: Um but you know, you you're sort of there going, Well, I'm now in this sort of uh this bracket, and there's people that are probably suffering much more than I am.
• 9:16
  SPEAKER_04: Yeah you know.
• 9:17
  SPEAKER_01: But there's always gonna be someone that's worse off, in there.
• 9:20
  SPEAKER_01: You can't you can't think like that, but I get what you mean.
• 9:23
  SPEAKER_01: Like, then again, they're hidden illnesses for a reason, aren't they?
• 9:26
  SPEAKER_01: I mean, you would I don't think you would know anything was wrong in vessel if someone walked past a day.
• 9:31
  SPEAKER_04: No.
• 9:32
  SPEAKER_04: You you wouldn't other than chatting to you, we'd we'd understand after that, but yeah.
• 9:36
  SPEAKER_01: We're not on about mental, we're on about physical, Anthony.
• 9:39
  SPEAKER_04: I'm joking.
• 9:40
  SPEAKER_04: I'm allowed to do this because we're friends.
• 9:42
  SPEAKER_01: We are, we're friends.
• 9:46
  SPEAKER_01: Podcast friends.
• 9:48
  SPEAKER_01: So when did you get your ostomy surgery then?
• 9:52
  SPEAKER_04: Uh February of 2020.
• 9:55
  SPEAKER_04: I think it's February 12th or February 13th.
• 9:57
  SPEAKER_04: But I my getting my stoma was more of a I elected to do it.
• 10:03
  SPEAKER_04: I know you guys have spoken about this a lot, like some people either have it emergency, they get elected, or you know, etc.
• 10:09
  SPEAKER_04: I had so many failed uh medical treatments beforehand of going into sort of three or four months' worth of remission and then it's just all going back downhill.
• 10:18
  SPEAKER_04: And then you're like, right, what do I do now?
• 10:19
  SPEAKER_04: And they go, We'll put you on this one.
• 10:21
  SPEAKER_04: And then more blood tests, keep make sure everything's okay.
• 10:24
  SPEAKER_04: Oh, it's not working, try again.
• 10:25
  SPEAKER_04: I just I turn around to my consultant and said, Can we just cut it out?
• 10:30
  SPEAKER_04: I've had enough of it.
• 10:31
  SPEAKER_04: But he did say always like first thing, you're in the driving seat, it's up to you.
• 10:35
  SPEAKER_02: Yeah.
• 10:36
  SPEAKER_04: Like he's like, Yes, if you want to elect to do it, it's fine.
• 10:40
  SPEAKER_04: But what you'll have to understand is your class is healthy.
• 10:43
  SPEAKER_04: There are people that are gonna have to have bowel surgeries who are very unhealthy who will automatically go to the top.
• 10:48
  SPEAKER_04: So if you're cancer patients, you straighten, if you're elderly, you're gonna be above me.
• 10:53
  SPEAKER_04: So I think my initial surgery was booked, I think, uh 10 months beforehand, and it was just put back every single month.
• 11:00
  SPEAKER_04: Um yeah, and that was I think that was harder to deal with because it's again, you get so close to right, I can now start this journey and then it's pushed back, then push back, then push back, then push back.
• 11:11
  SPEAKER_04: Um but yeah, had it had it in February, just before lockdown.
• 11:15
  SPEAKER_01: I remember actually, because I had mine in the June of that year.
• 11:17
  SPEAKER_01: And I when I started going on social media and trying to see adults with it, because I was only taking content with the view of being a parent to a little ostent and not having one myself.
• 11:28
  SPEAKER_01: And I remember seeing your content and you recently having surgery.
• 11:31
  SPEAKER_01: And yeah, I remember straight away.
• 11:34
  SPEAKER_04: And you were like, Well, who's what's this idiot doing?
• 11:37
  SPEAKER_01: Put a shirt on.
• 11:38
  SPEAKER_00: No, because yours went viral, didn't it?
• 11:39
  SPEAKER_01: Because you Yeah, you went, you you literally went Did I?
• 11:43
  unknown: Yeah.
• 11:43
  SPEAKER_04: Oh, I didn't think I did.
• 11:44
  SPEAKER_01: But I think the thing with your content is there's not many men out there that talk about their bodies, talk about the fashion side of having an ostomy.
• 11:54
  SPEAKER_01: There aren't, are they really?
• 11:56
  SPEAKER_01: Compared to females with the amount of females that talk about their clothes and talk about how they feel in their own skin, show some skin and all that.
• 12:04
  SPEAKER_01: Come the ratio of females doing it to men is so different.
• 12:07
  SPEAKER_04: Oh, yeah, yeah, yeah.
• 12:08
  SPEAKER_04: I think I think like even when I look up my profile and bits, it shows you who visits your page and whatever and how many people are in the community.
• 12:15
  SPEAKER_04: I think it's like 70% uh female that are openly discussing it.
• 12:20
  SPEAKER_04: A lot of men will do it, but it's like very quietly.
• 12:23
  SPEAKER_04: And there's a few that will a bit like myself will talk much more openly and things, but it's there is coming up.
• 12:29
  SPEAKER_04: There are a lot of people that are coming up with it, and that's but you were filling that gap, weren't you?
• 12:33
  SPEAKER_01: A little bit, I guess.
• 12:34
  SPEAKER_00: No, you do a cracking job.
• 12:35
  SPEAKER_00: How did you manage when everything did go viral?
• 12:37
  SPEAKER_00: Because didn't it get picked up by the BBC?
• 12:40
  SPEAKER_04: Ah, so no, the BBC actually um that all happened pre-surgery.
• 12:44
  SPEAKER_04: So I was um with one of my friends who was also an IBD patient who was working within the BBC at the time that said, um, I'd like to do a piece on your stuff journey.
• 12:54
  SPEAKER_04: Um and it was supposed to be all in person, but then because COVID hit, it was like you're gonna have to film it all on your mobile in hospital.
• 13:03
  SPEAKER_04: Um which was it was really interesting.
• 13:06
  SPEAKER_04: I really enjoyed it, but I wanted to show like the actual raw part of it.
• 13:11
  SPEAKER_04: Because lots of people may elect for surgery and go, Great, cool.
• 13:15
  SPEAKER_04: You know, the doctor have told me I'm gonna be out in four or five days.
• 13:18
  SPEAKER_04: You're really healthy, you're fit, you'll walk this and then you'll be out the door.
• 13:22
  SPEAKER_04: So I had my surgery, and then a lady in the ward had the surgery like literally the day after.
• 13:26
  SPEAKER_04: She was about 80.
• 13:27
  SPEAKER_04: She went home after four days, and I was still stuck.
• 13:30
  SPEAKER_01: Oh, how can they say that?
• 13:31
  SPEAKER_01: They don't know what's gonna happen.
• 13:33
  SPEAKER_04: Well, exactly, but it was I got um uh was it Iliost?
• 13:37
  SPEAKER_00: Oh, good old, good old post op Ilias.
• 13:40
  SPEAKER_04: Fell asleep, and I was like, it's not working, and then it was um right, here's your NG tube.
• 13:46
  SPEAKER_04: We're just gonna we're just gonna have to uh you know monitor this for ages.
• 13:50
  SPEAKER_04: I know you guys were talking about NG tubes on the last pod.
• 13:53
  SPEAKER_04: Um I know the the the size has to be 14.
• 13:56
  SPEAKER_04: I can take it this sounds very old, I do apologise.
• 13:58
  SPEAKER_04: I could take it like a champ.
• 13:59
  SPEAKER_04: I just go and put it in, swallow.
• 14:02
  SPEAKER_04: And everyone else, like, because I've had so many that are too big.
• 14:05
  SPEAKER_04: I was like, that's not going anywhere, love.
• 14:07
  SPEAKER_04: Like, that's it.
• 14:08
  SPEAKER_00: The the fact that you managed to champ that wake, I salute you because Why do you have it so many times?
• 14:14
  SPEAKER_04: You're like, come on.
• 14:15
  SPEAKER_00: That's the one thing I can't deal with.
• 14:17
  SPEAKER_00: I can deal with anything, but the amount of times I've had an NG tube in, I hate them.
• 14:22
  SPEAKER_00: And the last time I had Ilius, they was like, right, you need an NG tube because my pal was asleep for like 10 days.
• 14:27
  SPEAKER_02: Yeah.
• 14:28
  SPEAKER_00: And I was like, no, just let it pass, it'll pass, it will happen, it'll wake up, but you are not.
• 14:32
  SPEAKER_00: If if you want want me to have that, you're gonna have to take me back down and knock me out and put it through and wake up.
• 14:36
  SPEAKER_00: Yeah.
• 14:37
  SPEAKER_00: Because I think I I think when you don't have that, when you don't have control and it's something that is out of your hands, I think that that has quite a detrimental effect on your mental health.
• 14:48
  SPEAKER_00: 100%.
• 14:49
  SPEAKER_00: Especially if you're having obviously the stoma surgery to make you feel better.
• 14:52
  SPEAKER_00: Yeah.
• 14:52
  SPEAKER_00: And then you kind of do feel better for the first day or two when you wake up until you realise that, oh, everything I'm bringing up is green and Yeah.
• 15:00
  SPEAKER_04: That's a funny colour.
• 15:01
  SPEAKER_04: What's that?
• 15:04
  SPEAKER_00: Why is it that big?
• 15:05
  SPEAKER_04: I'm sure it's small.
• 15:06
  SPEAKER_00: Why is my stoma going black?
• 15:08
  SPEAKER_00: That's that's because that's the other thing that they don't tell you about post-opilius.
• 15:11
  SPEAKER_00: Your stoma starts to not necrotic, but kind of starts to die.
• 15:16
  SPEAKER_00: So it kind of goes healthy.
• 15:18
  SPEAKER_00: Yes, because it's not getting enough enough supply of anything because the bow's not moving.
• 15:22
  SPEAKER_00: It does start to go black and it does sloth you off, and then you've got them coming doing the rounds every day, going, Oh well, if this doesn't improve, we're gonna have to take you back down to the theatre and redo your stoma.
• 15:31
  SPEAKER_02: Yeah.
• 15:32
  SPEAKER_01: It's and again, would they have were you guys warned of that possible thing post-stop?
• 15:38
  SPEAKER_01: Because I wasn't.
• 15:39
  SPEAKER_01: I was.
• 15:40
  SPEAKER_01: I was, yes, it's happened all over again.
• 15:43
  SPEAKER_01: It's post-coglottery, innit?
• 15:44
  SPEAKER_04: Because you know, you are right, you're so right.
• 15:47
  SPEAKER_01: Yeah, like it is what one person's told could happen after another person isn't.
• 15:51
  SPEAKER_01: It's madness.
• 15:52
  SPEAKER_04: I think I mean just on those topics, like when when I had all that sort of pre-op stuff, because I had so many surgeries moved back, I had the same conversation like two or three times.
• 16:01
  SPEAKER_04: So I was like, Yeah, I know what's gonna happen, you know.
• 16:03
  SPEAKER_04: And then when I finally had like, right, here's your pre-op, then we're gonna have the operation, it was much sort of closer.
• 16:09
  SPEAKER_04: So I kind of understood it.
• 16:10
  SPEAKER_04: But yeah, I was in post the Ilios part, I was there for 19 days.
• 16:15
  unknown: Oh.
• 16:15
  SPEAKER_04: And a lot of that was just And how many days did they say you were gonna be in for?
• 16:18
  SPEAKER_01: Like three or four.
• 16:19
  SPEAKER_04: Uh-huh.
• 16:20
  SPEAKER_01: So that eighty-year-old was skipping down the road or you were not in there.
• 16:22
  SPEAKER_04: Yeah, yeah.
• 16:24
  SPEAKER_01: She was out quite a bit, wasn't she?
• 16:25
  SPEAKER_01: Living the best life while you were still.
• 16:27
  SPEAKER_04: Swinging her bag around, right?
• 16:29
  SPEAKER_04: Um but yeah, no, that was the I think that was the hardest bit.
• 16:32
  SPEAKER_04: Because you you've, you know, no one could visit you because it was COVID.
• 16:37
  SPEAKER_04: You've got to stay in your own bed.
• 16:39
  SPEAKER_04: You can't really do anything.
• 16:40
  SPEAKER_04: And I was on um kneel by mouth for like three or four days at a time, and it's like, right, now we're gonna try sips, and then we're gonna try this.
• 16:48
  SPEAKER_04: Oh, it's not working, right?
• 16:50
  SPEAKER_04: End your tube back in, start the process again.
• 16:53
  SPEAKER_04: Um, and I you know, I'd just I used to say that, can I go for a walk?
• 16:56
  SPEAKER_04: I'm so bored, I have to get out of here.
• 16:58
  SPEAKER_04: But weirdly, I'd watch videos of like cooking programmes and stuff like this.
• 17:03
  SPEAKER_04: Oh god, why'd you do that?
• 17:04
  SPEAKER_04: Everyone's sitting, why are you doing this?
• 17:06
  SPEAKER_04: Because when I get out of here, I'm gonna have like the most amazing dinner ever, and I'm just this is my dream.
• 17:10
  SPEAKER_04: That's my end goal.
• 17:12
  SPEAKER_01: But you do, if you so anyone that follows Ant, you're you do post a fair bit of food content.
• 17:17
  SPEAKER_01: You and your fiance go to some banging restaurants and you do share some pucker food and you cook it as well.
• 17:23
  SPEAKER_04: Like it's very She's landing an absolute keeper.
• 17:25
  SPEAKER_01: She really has.
• 17:27
  SPEAKER_01: Does she have any idea?
• 17:28
  SPEAKER_04: I tell her every day, no, I don't.
• 17:31
  SPEAKER_01: Oh my gosh, you need to tell us about your fiance.
• 17:35
  SPEAKER_01: So I l oh your engagement.
• 17:38
  SPEAKER_01: Oh.
• 17:39
  SPEAKER_01: How dreamy was that?
• 17:41
  SPEAKER_01: Not that I'm dropping.
• 17:44
  SPEAKER_04: No, it was good.
• 17:45
  SPEAKER_04: It was really good fun.
• 17:46
  SPEAKER_01: Um I think you shared stuff about, you know, finding someone that accepted you for you and your own thoughts on all that, which is such a well, like, you know, we could talk about that topic of finding love with a bag for hours.
• 18:00
  SPEAKER_00: I think I remember you saying that you guys had only been going out for a couple of weeks when you had your surgery.
• 18:04
  SPEAKER_04: Oh, we only went on a couple of dates.
• 18:06
  SPEAKER_04: Yeah.
• 18:06
  SPEAKER_04: So it was literally like What a woman.
• 18:08
  SPEAKER_01: Let's just take a moment to appreciate this woman.
• 18:11
  SPEAKER_01: That's Jessica.
• 18:12
  SPEAKER_01: Thank you.
• 18:15
  SPEAKER_04: Oh dear, she'll go bright red listening to this.
• 18:17
  SPEAKER_04: That'd be great.
• 18:18
  SPEAKER_01: No one can see her do it, so it's fine.
• 18:19
  SPEAKER_01: Go red, go red.
• 18:20
  SPEAKER_04: Um yeah, we like I just met up with her literally like oh, this isn't gonna go anywhere.
• 18:26
  SPEAKER_04: I just want to go on a date with somebody, and then I'm having surgery in a couple of weeks.
• 18:30
  SPEAKER_01: So did you tell her in that first day?
• 18:32
  SPEAKER_04: I told her, I told her in.
• 18:33
  SPEAKER_01: What did you tell her first?
• 18:34
  SPEAKER_01: You had three legs or you were gonna have stoma surgery?
• 18:36
  SPEAKER_01: Which one did you go with first?
• 18:38
  SPEAKER_04: No, it was more just I think I told her even early on, like, because a lot of people, and I'll this is the only advice I give to a lot of people in this space that are looking to date.
• 18:46
  SPEAKER_04: Um, I found it easier saying that these are all the things that I'm doing in my life, and this is the elephant in the room.
• 18:52
  SPEAKER_04: I'm gonna say it now, yeah, so I can then filter through all the people I don't want to then commit any energy to or or time with.
• 18:58
  SPEAKER_04: So I thought I'll just do that.
• 19:00
  SPEAKER_04: And she was like, Yeah, cool.
• 19:01
  SPEAKER_04: What is it?
• 19:02
  SPEAKER_04: And I was like, this is what's gonna happen.
• 19:04
  SPEAKER_04: I remember after surgery we met up, and that was when I was very much like I look so different.
• 19:10
  SPEAKER_04: Oh like I'd lost a lot of weight.
• 19:12
  SPEAKER_04: I think I lost like two kilo in hospital.
• 19:15
  SPEAKER_04: Um, I'd uh I obviously had a new bag, and I remember being like, So this is it.
• 19:20
  SPEAKER_02: And she was like, Oh, it's really cool.
• 19:22
  SPEAKER_04: Oh so yeah, no, it's good, it's really good.
• 19:24
  SPEAKER_04: So yeah, and then um yeah, gosh, uh yeah, the engagement that was uh that was fun.
• 19:31
  SPEAKER_01: How does she so how is she with like when you have your prolapses and things like that?
• 19:37
  SPEAKER_01: What's she like?
• 19:38
  SPEAKER_04: Oh so I and stop being so dramatic, skill.
• 19:41
  SPEAKER_00: That's what we want in it.
• 19:42
  SPEAKER_04: That's you know it's all me, me, me with you, girl.
• 19:46
  SPEAKER_00: Did you did you want to explain what a prolapse is?
• 19:49
  SPEAKER_00: Because we're seeing it now more on Instagram with other ostomates that have had it.
• 19:54
  SPEAKER_00: Yeah, yeah.
• 19:55
  SPEAKER_00: I know Rachel Drew who literally has got the biggest prolapse ever.
• 20:00
  SPEAKER_00: Um and I've watched her actually physically put it back in.
• 20:08
  SPEAKER_00: She shared it on a YouTube video.
• 20:10
  SPEAKER_00: Yeah, with the sugar and the ice and the gloves.
• 20:13
  SPEAKER_04: Yeah, yeah, yeah.
• 20:14
  SPEAKER_04: So um for people that don't know, prolapse basically is is your your small intestine is for an ileostomy.
• 20:20
  SPEAKER_04: Um obviously sits outside your abdominal wall.
• 20:23
  SPEAKER_04: And all that really happens is for me, I've kind of worked out why it happens, is my stoma will try and just push something through.
• 20:30
  SPEAKER_04: Usually it's very, very thick output, and then it just pushes too hard and the stoma sort of telescopes out more.
• 20:36
  SPEAKER_04: Yeah so it just falls out.
• 20:37
  SPEAKER_01: And quite a considerable amount, isn't it?
• 20:39
  SPEAKER_04: Yes, like I mean, so it happened first St.
• 20:42
  SPEAKER_04: Patrick's Day a couple of years ago.
• 20:44
  SPEAKER_04: I remember Santa going like I've got like a partial blockage coming on, I can just feel it.
• 20:48
  SPEAKER_04: And like you guys will know, like when you get a blockage, you're like, I just don't feel very comfortable.
• 20:52
  SPEAKER_04: Yeah, and then it passed.
• 20:53
  SPEAKER_04: I was like, cool, all the contents come out of my bag, excellent.
• 20:57
  SPEAKER_04: Went to the toilet, it's like cool, I'll carry on with my evening, and then was like my bag's filled up immediately.
• 21:03
  SPEAKER_04: Like, that's not right, and then was feeling around with it, and I was like, That's not normal.
• 21:10
  SPEAKER_04: Right, I'm gonna go to the toilet and went to the toilet, and when I like went to look at my bag, but most of my gut was in my.
• 21:16
  SPEAKER_01: How did you how did you feel in that moment?
• 21:18
  SPEAKER_04: How did you not gonna lie to you?
• 21:20
  SPEAKER_04: Uh it's like I had a I can't, you know, go out the back end because I was like, right, I'm so petrified of this, isn't it?
• 21:26
  SPEAKER_01: Yeah, yeah.
• 21:27
  SPEAKER_04: I can't believe it's not.
• 21:28
  SPEAKER_04: You don't expect to see that.
• 21:29
  SPEAKER_04: Oh, it was honestly, I was just like, uh I don't know what to do.
• 21:34
  SPEAKER_04: I'm in central London.
• 21:35
  SPEAKER_04: I I need to go home.
• 21:37
  SPEAKER_01: Is this the time when you did went to meet some fellow ostomerts or is that was that another time?
• 21:41
  SPEAKER_04: No, that was another time.
• 21:42
  SPEAKER_04: And that happened again.
• 21:43
  SPEAKER_01: Yeah, I remember that.
• 21:45
  SPEAKER_04: Yeah.
• 21:45
  SPEAKER_04: So I did initially think it must be down to me going out and meeting and having alcohol because I was drinking on St.
• 21:51
  SPEAKER_04: Patrick's Day.
• 21:52
  SPEAKER_04: I wasn't drinking a lot.
• 21:53
  SPEAKER_04: Met it with other people, same thing.
• 21:55
  SPEAKER_04: Um and I was like, maybe it's alcohol then.
• 21:57
  SPEAKER_04: I'll cut back on the alcohol.
• 21:59
  SPEAKER_04: I've done it with.
• 22:00
  SPEAKER_04: Been standing still and gone, why does it come out?
• 22:03
  SPEAKER_04: All you do, it's nothing to be worried about.
• 22:06
  SPEAKER_04: Most of the time, if you lie down, it will go back in on its own.
• 22:09
  SPEAKER_01: Yeah.
• 22:09
  SPEAKER_04: Sometimes you can put sugar on it, which is fine.
• 22:11
  SPEAKER_04: I've done that.
• 22:12
  SPEAKER_01: Um so when you say put sugar on it, for those that don't know, what we're talking about?
• 22:17
  SPEAKER_01: A kilogram bag?
• 22:18
  SPEAKER_04: What we're talking about, just like I literally got a couple of spoonfuls of sugar and just put it round it and said that'll help.
• 22:24
  SPEAKER_04: Cold compresses or cold water get in the shower, that will help.
• 22:27
  SPEAKER_04: To be honest though, if you lie down, that's gonna do most of it.
• 22:33
  SPEAKER_04: I've kind of I've kind of done it now just with my bag and I'll just pull my bag up and it'll go back in.
• 22:37
  SPEAKER_04: Right, okay.
• 22:39
  SPEAKER_04: But yeah, most people like take it off.
• 22:41
  SPEAKER_00: That may be quite shocking for some people because you you know, my stomach is normally that big, and then it's like have you I know I know some people have obviously said because I know a couple of women that have got prolapses, obviously not big ones, but um smaller, um, normally associated with people like with like muscular muscular dystrophy, elostanos.
• 23:04
  SPEAKER_00: Um because it's to do with the muscles, because the muscles obviously is to hold it in place.
• 23:09
  SPEAKER_00: If the muscles waste an oris, it's not holding it in, so you're more likely to prolapse.
• 23:14
  SPEAKER_00: Yeah.
• 23:14
  SPEAKER_00: Um, but some have said it's quite painful, others have said that they don't even notice it.
• 23:19
  SPEAKER_02: Yeah.
• 23:20
  SPEAKER_00: Um, the more painful part is it going back in and can you feel it when it goes back in?
• 23:26
  SPEAKER_04: No, well, to be honest though, like you all know when your stoma's like moving, when it's trying to pass something out, it just kind of feels like that.
• 23:34
  SPEAKER_04: So I don't get any pain with it.
• 23:36
  SPEAKER_04: The reason I think I have it is because after my first surgery, they fashioned the hole too tight, and then they said, right, come back in 12 weeks later.
• 23:45
  SPEAKER_04: Because I couldn't even have soup without getting blockages.
• 23:47
  SPEAKER_04: I was like, I'm getting blockages all the time, it's ridiculous.
• 23:49
  SPEAKER_04: So they make the hole ever so slightly bigger, and I remember the consultant at the time saying we can't change it to make it any bigger because you will probably prolapse.
• 23:59
  SPEAKER_04: But he said everything's fine at the moment, so don't worry about it.
• 24:02
  SPEAKER_04: And I've kind of I kind of know, but I'd assume that's probably why it's so I'm not really worried about it, and it goes back in.
• 24:10
  SPEAKER_04: So at the moment, touch wood, which I can't do, otherwise I'm gonna ruin the podcast.
• 24:13
  SPEAKER_04: But but yes, that would be the reason as well.
• 24:17
  SPEAKER_00: But do you find it quite an inconvenience?
• 24:19
  SPEAKER_04: Do you know what?
• 24:20
  SPEAKER_04: Um yes and no.
• 24:22
  SPEAKER_04: Uh the inconvenience is I need to lie down and I I need to do it now because I'm not waiting two and a bit hours, I need to find somewhere to lie down, so I'll just lie down.
• 24:31
  SPEAKER_04: And when I went up with uh with you know, met the meetup with people, fortunately, I was with loads of ostomotes.
• 24:36
  SPEAKER_04: Yeah, I mean if and if you want to have it happen, I know, and I was like, it's the first time I met Fit first time I met Philipper and and Amy and a few other people, and I was like, sorry guys, I'm just gonna lie down on this bench, just excuse me one second.
• 24:47
  SPEAKER_01: You should have just whipped everything off the table and laid down in the meeting.
• 24:52
  SPEAKER_01: Yeah.
• 24:52
  SPEAKER_04: I was like, yeah, you you carry on, and then it went back in and I was fine.
• 24:55
  SPEAKER_04: And then we carried on the evening.
• 24:56
  SPEAKER_00: But it's you know what has your uh surgeon advised with regards to the prolapse?
• 25:00
  SPEAKER_00: What discussions have you had?
• 25:02
  SPEAKER_04: To be honest, I haven't.
• 25:03
  SPEAKER_04: I've I've spoken to my stoma nurses and they said, Is it out at the moment?
• 25:07
  SPEAKER_04: No, it's back in.
• 25:08
  SPEAKER_04: Okay.
• 25:08
  SPEAKER_04: If there are any issues, it keeps carrying on, then let us know.
• 25:12
  SPEAKER_04: I've gone into AE, seen obviously the triage doctors and people, and even they've just said, Well, if it's back in now, then it's gonna happen from time to time.
• 25:20
  SPEAKER_04: If it goes really dark in colour, that's when you need to seriously come back in, as you were saying, or go necrotic, it's losing oxygen and rich blood supply.
• 25:28
  SPEAKER_04: But they were like, it's just gonna happen.
• 25:30
  SPEAKER_04: And I when I I've done a few posts about it, and a lot of people have said, mine does it every day, mine will do it every day.
• 25:38
  SPEAKER_04: Some people will have it and it's permanently out and it won't go back in.
• 25:42
  SPEAKER_04: So it's kind of a lottery.
• 25:44
  SPEAKER_04: I don't mean to say this to sort of you know perturb anyone or or steer them away from surgery, but it's just one of those things, isn't it?
• 25:51
  SPEAKER_04: Yeah, I've not been funny, we've all had to go through so many bits of everything.
• 25:57
  SPEAKER_04: It's just it's just another thing you're gonna have to do.
• 26:02
  SPEAKER_01: Yeah, because what you were feeling before.
• 26:04
  SPEAKER_00: Because I think the the the advice normally with regards to the surgeons is is that if it's prolapsed once, even if they do surgery again, it's no guarantee.
• 26:12
  SPEAKER_00: It there's no guarantee that it won't prolapse again.
• 26:15
  SPEAKER_00: And it it's it's kind of like between a hard rock and a brick wall with with regards to it.
• 26:24
  SPEAKER_00: And you know, I I know someone that's had like four prolapse repairs, and every time they've had the prolapse repair, the prolapse has got worse, it's come out further.
• 26:34
  SPEAKER_02: Yeah, yeah, yeah.
• 26:34
  SPEAKER_00: Um because there's it's something to do, is it's basically the the the bow telescopes out.
• 26:39
  SPEAKER_04: Yeah, yeah, yeah, yeah.
• 26:41
  SPEAKER_04: So it goes it it just telescopes out and then that's why it will come back in and retract to kind of its normal thing because it's the end.
• 26:46
  SPEAKER_04: It kind of turns itself inside out, inside out, like yeah, kind of goes that that way if that makes sense.
• 26:51
  SPEAKER_00: It telescopes out, so it's not it's not your interest in pushing out and throwing, it's basically telescoping itself back out.
• 26:57
  SPEAKER_04: Yeah.
• 26:57
  SPEAKER_04: Because I I had it three times in one day.
• 27:00
  SPEAKER_04: Yeah, so that was fun.
• 27:01
  SPEAKER_01: What were you doing that day?
• 27:03
  SPEAKER_04: Did a park run, so did that, and then got to the end and went, oh okay, I lied down.
• 27:08
  SPEAKER_04: Fortunately, uh I finished, and then Jessica was also doing the park run.
• 27:11
  SPEAKER_04: I was like, Oh, I've got 15-20 minutes to lie down and sort it out.
• 27:15
  SPEAKER_04: You've just rooted your own.
• 27:17
  SPEAKER_04: That's fine.
• 27:17
  SPEAKER_04: I did every look on Instagram anyway, it's fine.
• 27:19
  SPEAKER_01: Yeah, she took another three minutes and then she came along.
• 27:22
  SPEAKER_04: She breezed past me over the finish line.
• 27:23
  SPEAKER_04: She ducked it like that, get the time in.
• 27:26
  SPEAKER_04: Um, but yeah, so laid down, did that.
• 27:28
  SPEAKER_04: Then we went to a barbecue.
• 27:30
  SPEAKER_04: Uh no, then I came home, it happened again.
• 27:32
  SPEAKER_04: Then we went to a barbecue and it happened again.
• 27:35
  SPEAKER_04: And I was like, this is getting really silly.
• 27:36
  SPEAKER_04: So what I I thought it was, and I think this has kind of helped, was I think I was kind of my s my ring.
• 27:41
  SPEAKER_01: Ah, too small.
• 27:42
  SPEAKER_01: Maybe a bit too small.
• 27:43
  SPEAKER_01: Yeah.
• 27:44
  SPEAKER_04: So assumed, right, that's gonna cause, in theory, I could this could be completely.
• 27:48
  SPEAKER_04: I mean, if there's any medical experts or doctors to, you know, please comment and say, no, you're wrong, because I'd love to know the ins and outs of this.
• 27:54
  SPEAKER_04: But just assumed if you're creating a smaller hole, that's gonna create more pressure for your stoma to sit in.
• 27:59
  SPEAKER_04: Yeah.
• 27:59
  SPEAKER_04: So therefore it's not gonna like it and it's gonna go, I don't like it, and try and push out slightly.
• 28:04
  SPEAKER_04: Yeah.
• 28:05
  SPEAKER_04: Um so I've just started cutting my ring a lot more larger and using some um uh some rings to now go round my stoma as well to protect the skin.
• 28:15
  SPEAKER_04: And that's been pretty much perfect so far.
• 28:17
  SPEAKER_04: Again, touch wood.
• 28:19
  SPEAKER_01: Are you flat or convex?
• 28:20
  SPEAKER_04: Flat.
• 28:21
  SPEAKER_01: Hey, what are you?
• 28:22
  SPEAKER_01: Convex.
• 28:23
  SPEAKER_01: Yeah, convex.
• 28:24
  SPEAKER_01: Are you firm or soft?
• 28:25
  SPEAKER_01: Soft.
• 28:26
  SPEAKER_01: Oh, I'm firm.
• 28:28
  SPEAKER_00: I don't know, it's weird because I might be firm.
• 28:32
  SPEAKER_00: Did they ever try you on a convex?
• 28:33
  SPEAKER_04: Well no, because mine mine sticks out quite a lot anyway.
• 28:36
  SPEAKER_04: So there's no need for a convex, um is what they've said to me.
• 28:39
  SPEAKER_04: So yeah.
• 28:40
  SPEAKER_00: You've got ulcerative colitis, so you've had several stoma surgeries.
• 28:45
  SPEAKER_00: Have you thought about a reversal and a J pouch?
• 28:48
  SPEAKER_00: I don't want it.
• 28:49
  SPEAKER_04: I don't want it.
• 28:50
  SPEAKER_00: Did they form a J pouch?
• 28:52
  SPEAKER_04: No.
• 28:53
  SPEAKER_04: They just cut it, left my rectum in and said, we'll just sew it up.
• 28:56
  SPEAKER_04: Balls in your corp, whatever you want to do.
• 28:58
  SPEAKER_01: And if you've got a what type of heliostomy have you got?
• 29:01
  SPEAKER_04: Uh end, I think it is, or what yeah.
• 29:05
  SPEAKER_01: So you've got one hole, not two.
• 29:06
  SPEAKER_04: Yeah, just one.
• 29:06
  SPEAKER_04: Yeah.
• 29:07
  SPEAKER_00: So so So you you you've had the you've had the Barbie butt.
• 29:13
  SPEAKER_04: No, I haven't had the barbie but I've still got my rectum.
• 29:15
  SPEAKER_04: Yeah.
• 29:15
  SPEAKER_04: So that all that area still works.
• 29:17
  SPEAKER_04: If I want to reconnect it, they can do.
• 29:19
  SPEAKER_04: But my doctor said, I think the term's up to subcollectomy is what I've had.
• 29:22
  SPEAKER_04: And he's just said, if you want to get it reversed, you can do.
• 29:25
  SPEAKER_04: But if you're happy with it and life's good, why change it?
• 29:30
  SPEAKER_04: And I've spoken to so many people that have had reversals and then gone, Life was easier with a bag, because it was a bit more manageable.
• 29:39
  SPEAKER_04: Without the bag, it was I'm still going six or seven times a day.
• 29:42
  SPEAKER_04: Oh, I'm still having to run, and I'm not really enjoying myself.
• 29:47
  SPEAKER_04: So I've kind of gone You're very active, aren't you?
• 29:52
  SPEAKER_01: I mean you ran a marathon.
• 29:53
  SPEAKER_01: I did, yes.
• 29:55
  SPEAKER_00: And then I suppose the other issue that you've got is if you do have a reversal, is that it's not going to be the way it used to be because you've only got your small bowel and not your large bowel.
• 30:02
  SPEAKER_04: So it'll go through everything will go through just as quickly, you know.
• 30:07
  SPEAKER_04: And then again, I don't know, for me, I reckon I've I probably still have maybe a little bit of colitis in my rectum because that's where it was mainly inflamed and all that sort of you know, sigmoid.
• 30:17
  SPEAKER_01: Do you suffer from any rectal pain or anything?
• 30:20
  SPEAKER_04: Uh no, I've got phantom uh what's it called?
• 30:22
  SPEAKER_04: Phantom poops or whatever they're called.
• 30:23
  SPEAKER_04: Yeah, that's great fun.
• 30:25
  SPEAKER_04: Yeah.
• 30:26
  SPEAKER_04: So I'm just like, I really need to go to the toilet, but nothing's gonna come out.
• 30:29
  SPEAKER_01: Do you do you just I know with me, I just sit there and let the good times roll.
• 30:34
  SPEAKER_01: Yeah, yeah.
• 30:34
  SPEAKER_01: Hope it passes.
• 30:35
  SPEAKER_04: Yeah, it's very funny.
• 30:36
  SPEAKER_04: There are honestly, there's times where I'll say to Jessica, I'm like, I've got to go for a sit-down poop, and she looks at me like Yeah, like what?
• 30:42
  SPEAKER_04: What?
• 30:42
  SPEAKER_04: But everyone says to you, right, and this may this is a guy thing, so I'm gonna, you know.
• 30:46
  SPEAKER_04: Some some ladies may do it as well, but a lot of men will go to the toilet, go for number two, and then they're for like 45 minutes scrolling on TikTok and stuff like that.
• 30:55
  SPEAKER_01: Exactly.
• 30:56
  SPEAKER_04: So I don't really get that until every now and again.
• 30:59
  SPEAKER_04: Yeah, they're like I'm like, oh 45 minutes of free scrolling, don't we?
• 31:03
  SPEAKER_01: Yeah, yeah.
• 31:04
  SPEAKER_01: Like I I feel like people get a lot done when they're sat on the toilet that we don't get the benefits of having that time.
• 31:10
  SPEAKER_01: If anything, I would just what we should do is start going in, sitting on the toilet.
• 31:14
  SPEAKER_01: We don't need the seat up because we ain't sitting anything.
• 31:16
  SPEAKER_04: Just chill.
• 31:18
  SPEAKER_01: Get some emails.
• 31:20
  SPEAKER_04: Yeah, just that's your thinking time.
• 31:24
  SPEAKER_01: It's crazy to me.
• 31:25
  SPEAKER_01: Absolutely.
• 31:26
  SPEAKER_01: I think bring back the toilet time.
• 31:29
  SPEAKER_00: Because I think about when um so when I had both two of my stoma surgeries, I still had part of my large bow in and I still have my rectum and I got diversion colitis.
• 31:42
  SPEAKER_00: The only way to stop that nine times out of ten is to have a reversal.
• 31:46
  SPEAKER_00: Reversal isn't an option for me.
• 31:49
  SPEAKER_00: Uh not not not pleasant at all.
• 31:52
  SPEAKER_01: I reckon you'll you should be a case study for the first bionic bum.
• 31:57
  SPEAKER_01: Bionic bottom robotics.
• 31:59
  SPEAKER_01: I've seen I I think you should make a case.
• 32:01
  SPEAKER_04: But I mean the biggest thing really with all of this though has been like being connected to a lot of people like yourselves.
• 32:08
  SPEAKER_04: And I think this is where for me, I know you've spoken a lot, like you know, oh your content's great.
• 32:13
  SPEAKER_04: It's not really about that.
• 32:14
  SPEAKER_04: Oh, don't be so, yeah.
• 32:15
  SPEAKER_04: No, no, no, no.
• 32:16
  SPEAKER_04: I mean it in the sense of I then get to meet people like you.
• 32:19
  SPEAKER_04: So if I have any questions, I can chat very openly with you guys about it.
• 32:23
  SPEAKER_04: And that I didn't have that, like, you know.
• 32:27
  SPEAKER_01: Well, 18-year-old aunt, I wonder how it would have.
• 32:30
  SPEAKER_04: No, would have no idea about it.
• 32:32
  SPEAKER_01: Yeah, yeah.
• 32:33
  SPEAKER_04: Do you see what I mean?
• 32:33
  SPEAKER_04: And there's loads of people that when you sit in hospital and you've all had your surgeries, when you're sitting waiting in that bed, you're like, I could I feel like one of the most I don't know what's gonna happen next.
• 32:46
  SPEAKER_02: Yeah.
• 32:46
  SPEAKER_04: Because they do say to you, so we I had mine with keyhole, and they said, But once we get in there, we don't know what's gonna happen.
• 32:51
  SPEAKER_01: Yeah.
• 32:52
  SPEAKER_04: And you're like, okay, so I could come out of the scar like that, or yeah.
• 32:55
  SPEAKER_01: And they put the dots on, I don't know about you guys, but they were like, right, we'll try and do it on the one side, but we'll put one because it might be.
• 33:01
  SPEAKER_01: So you're waking up thinking, ooh, what one am I gonna get?
• 33:03
  SPEAKER_04: Thing is, I was joking with my brother about it before I went in.
• 33:05
  SPEAKER_04: He was like, How are you feeling?
• 33:06
  SPEAKER_04: He's like, great.
• 33:07
  SPEAKER_04: Um, you know, just hope he said anything can happen.
• 33:09
  SPEAKER_04: And he was like, my brother was like, Yeah, I was like, Hopefully, don't wake up with any plastic boobs or anything like that.
• 33:13
  SPEAKER_00: I know, well, hey, for that and be a bonus for us, but yeah.
• 33:16
  SPEAKER_00: I know with me, I had a cross on either side, and it wasn't until they got went in, and they was like, Yeah, your your small bowels are dead to the abdominal wall.
• 33:25
  SPEAKER_00: We can't stretch to the right, there's not enough left side, yeah.
• 33:29
  SPEAKER_04: But again, that's this is the point.
• 33:30
  SPEAKER_04: You may sit there and go, Oh my god, I've you know, I can't speak to anyone about this, I'm not etc.
• 33:35
  SPEAKER_04: Then you connect to someone who goes, I had the same issue.
• 33:37
  SPEAKER_04: Yeah, not that people have it worse, but they said, Oh, I've you can have I've had this, this, and this, so I completely get where you're coming from, and that's why it's so so useful to talk to people about this.
• 33:48
  SPEAKER_01: And what's beautiful about it is no one's story is the same, but then we can always connect on something, and that's you know, that's sort of lush about it all, in there.
• 33:56
  SPEAKER_04: 100%.
• 33:57
  SPEAKER_00: Yeah, because I remember Ostomy Jack, I was doing a podcast with him.
• 34:00
  SPEAKER_04: Oh, Jack Jackie Boy.
• 34:01
  SPEAKER_00: I was going back through my messages and I was like, oh, I actually spoke to you when you first did your surgery, and I just totally forgot.
• 34:07
  SPEAKER_04: I I s we did a um I think we did a quiz and he was in, I want to say Devon or Exeter or something.
• 34:12
  SPEAKER_04: Um and I started speaking to him because he was stuck in hospital because he was having similar sort of post-op complications.
• 34:18
  SPEAKER_04: And I was like, Well, we're all on Zoom.
• 34:20
  SPEAKER_04: Do you fancy coming on and doing a silly quiz or something like that?
• 34:24
  SPEAKER_04: So yeah.
• 34:24
  SPEAKER_04: And that's when I started connecting with loads of people around the country, and Jessica always jokes, goes, She goes, These are ostomates.
• 34:32
  SPEAKER_04: And I'm like, Yes, because we've all got, you know, poo bags and stuff like this.
• 34:36
  SPEAKER_00: Well, I've always wondered where the t term ostomates where where that has come from.
• 34:40
  SPEAKER_00: Oh my god, is that what it means?
• 34:42
  SPEAKER_00: I don't know.
• 34:42
  SPEAKER_04: No, no, I just that's how I've seen it, and then I'll we're mates, so I've I've always used it that way around.
• 34:47
  SPEAKER_00: Is that what it means?
• 34:48
  SPEAKER_00: Who made who made this word?
• 34:50
  SPEAKER_00: Yeah, can anybody come back to us and tell us where the term ostomates come from?
• 34:53
  SPEAKER_04: Please comment below.
• 34:54
  SPEAKER_00: Yeah.
• 34:55
  SPEAKER_00: Well, I Because They're googling!
• 34:58
  SPEAKER_01: They're googling.
• 35:00
  SPEAKER_01: For the for the viewer, we now have the uh the people in the know Googling.
• 35:04
  SPEAKER_04: Yeah.
• 35:04
  SPEAKER_01: Yeah.
• 35:05
  SPEAKER_04: But yeah, I mean that's you know, I've met so many, met virtually, so many people.
• 35:11
  SPEAKER_04: You end up knowing so much about it.
• 35:13
  SPEAKER_01: Well, the ambassadors so we're all ambassadors together, and those events, oh God, it's yes.
• 35:18
  SPEAKER_01: Cheers to all you ambassadors out there, yeah.
• 35:20
  SPEAKER_04: Can we ask you?
• 35:21
  SPEAKER_01: Um yeah, I mean, oh what, you know, I always leave those events euphoric.
• 35:25
  SPEAKER_01: I think the first one, I literally was that high on life from meeting you all.
• 35:30
  SPEAKER_01: I went to find a tattoo shop and get a tattoo.
• 35:33
  SPEAKER_01: We don't have any tattoos.
• 35:35
  SPEAKER_01: None were open, thank God.
• 35:36
  SPEAKER_01: But I tell you what, if they were open, I would have come away with something shocking and hideous after something.
• 35:43
  SPEAKER_00: Probably got an infection because they were getting doing a clipboard on my back and doing the dates with all the meetups and it's like.
• 35:52
  SPEAKER_04: No, I don't I don't know if when I've been in prison.
• 35:55
  SPEAKER_04: No, tell me more.
• 35:56
  SPEAKER_04: Is it the dark side of the podcast that we're gonna talk about another time?
• 35:59
  SPEAKER_04: After I was an episode.
• 36:00
  SPEAKER_04: Behind bars.
• 36:03
  SPEAKER_00: Um how have you kind of found like adapting to gym life and running the London marathon and everything, like with with with a stoma and a stoma that prolapses?
• 36:12
  SPEAKER_00: How have you adapted and Do you know what?
• 36:14
  SPEAKER_04: It's the one thing that I did say before surgery was if I can't do my fitness, if I can't run, I can't do it, I don't want it.
• 36:20
  SPEAKER_04: I will put up with all the drugs, I'll do everything, because that was such a big part of my life, playing rugby, running, whatever.
• 36:28
  SPEAKER_04: Um, and they said, No, you can do all of it.
• 36:30
  SPEAKER_04: Just you need to build up your abdominal strength, um which was fine, easy, and then take it easy.
• 36:38
  SPEAKER_04: Like start slow, literally crawl, walk, run, and then just I where when I go running, um I've got a um a support band that I put around my stoma um that keeps everything in.
• 36:51
  SPEAKER_04: Um I got measured actually for the first time the other day.
• 36:53
  SPEAKER_04: A lady came around, um Colette, if you're listening.
• 36:56
  SPEAKER_04: So yeah, she uh Colette came round and and measured me.
• 36:59
  SPEAKER_04: And I was always getting stuff from like the internet or uh you know, places like Comfies and things like that, and there are other you know stoma providers available.
• 37:08
  SPEAKER_04: Um but they literally said you know, are you small or medium and you just get it on your prescription?
• 37:14
  SPEAKER_04: Yeah, you know, and a lot of the stuff I was like I'll wear this, but it doesn't I don't know if this is working.
• 37:20
  SPEAKER_04: And when she came around she said, No, you need to have it properly measured, you have to have everything sorted so your st your stoma isn't moving, your bag's not moving, it's stuck there.
• 37:29
  SPEAKER_04: Um and since I've got like the belt and and the other things that that that I've now got, it's great.
• 37:34
  SPEAKER_04: But you need to you need to really understand and prepare, you know, what you need.
• 37:42
  SPEAKER_04: Some people will do everything without a belt or without any hernia support or anything like that.
• 37:46
  SPEAKER_04: And I could do that, but I just kind of choose not to.
• 37:50
  SPEAKER_04: Because it's more that element of comfort mentally, I would say.
• 37:55
  SPEAKER_00: I think the difference is so all the surgeries that I have had when I had my reversal, I woke up with a corset to hold everything in place.
• 38:04
  SPEAKER_00: When I had my stoma in 2016, I woke up again, they put me in a corset before I left hospital.
• 38:12
  SPEAKER_00: Once I'd had the bridge taken out, I had a corset.
• 38:16
  SPEAKER_00: And um you are you are advised, it's it's all well and great wearing support belts and having things sort of tucking you in, but I always find that they're quite restrictive.
• 38:27
  SPEAKER_00: Um, and especially with some support belts, it's it's kind of a case of you've got the support there, but you've also got that feeling of feeling like you've been kind of whacked into spandex, whereas the belts are completely different.
• 38:43
  SPEAKER_00: So if they give you the corsets or they give you a belt, it's made to measure, it's made for your social media.
• 38:48
  SPEAKER_04: They did give me a corset, but I said that's for my Fridays, to be fair.
• 38:52
  SPEAKER_04: But no, um I mean, because you're you're you do like, you know, gym work and stuff like that as well.
• 38:56
  SPEAKER_04: Like, what's it like with with yours?
• 38:58
  SPEAKER_01: I I to be honest, I find well, I don't know about you, but when I do exercise, I get boiling.
• 39:07
  SPEAKER_01: I get so hot.
• 39:08
  SPEAKER_01: I get unbelievably hot, and I never used to get like that before my stoma surgery, and I don't know why.
• 39:13
  SPEAKER_01: I don't know if that's a a common theme, but um, I just feel like my head gets so hot, my head is gonna explode.
• 39:21
  SPEAKER_01: And then if I've got a belt on, it just makes me feel even worse.
• 39:25
  SPEAKER_01: So I try and go when I can without one, but again, it's the security of having one on, you can't beat it.
• 39:32
  SPEAKER_01: But yeah, I would much rather wear a I've never had a made-to-measure belt.
• 39:37
  SPEAKER_04: I'd recommend it.
• 39:39
  SPEAKER_01: But I do I wear waistbands.
• 39:41
  SPEAKER_01: Yeah.
• 39:41
  SPEAKER_01: But again, I like the spandex feeling.
• 39:44
  SPEAKER_04: Yeah.
• 39:45
  SPEAKER_04: I like being cinched in.
• 39:46
  SPEAKER_04: Are support text covered under prescription or is it some and I think that's the thing, because when we were talking all about it, I've got a lot of stuff on prescription and and we were sort of saying like that's not gonna do anything for you.
• 39:59
  SPEAKER_04: You need something properly, uh properly measured for you for your needs.
• 40:03
  SPEAKER_04: Because I'll do a lot of heavy lifting in the gym.
• 40:05
  SPEAKER_04: She's like, No, you need this.
• 40:06
  SPEAKER_04: You know, you'll be fine.
• 40:08
  SPEAKER_01: You've been given professional advice about a company that actually knows what we're on about.
• 40:13
  SPEAKER_01: You haven't gone on a website and gone, oh, that looks alright, I'm properly medium, boom.
• 40:17
  SPEAKER_04: Yeah, and then gone, that should help.
• 40:18
  SPEAKER_04: Because that again, that's the risk as well, is there's still an educational piece around that.
• 40:22
  SPEAKER_04: Because a lot of people will go, well, I don't really know who to go to.
• 40:24
  SPEAKER_04: Oh, you someone's gonna be able to do it.
• 40:25
  SPEAKER_01: They're so expensive.
• 40:26
  SPEAKER_01: If you don't know they're on prescription, you can expect you.
• 40:30
  SPEAKER_00: But just just to add a caveat, not everybody will be able to get that on prescription because dependent on the area that you're living in or your GP's um budget, um, not everyone will be able to get support belts on prescription, it's the same as everybody um you can get stominickers on prescription, but not everybody can, and they have to pay for them.
• 40:53
  SPEAKER_00: So it's a case of you either can or you can't.
• 40:55
  SPEAKER_00: There's no I mean, you can try and argue it.
• 40:58
  SPEAKER_01: I mean, it's where children are concerned, so I've got a little boy who's seven with a stoma, and who's here today?
• 41:03
  SPEAKER_01: Who's here today, little man?
• 41:05
  SPEAKER_03: Give us a wave, Jakey Boy.
• 41:09
  SPEAKER_01: Um, so he's been wearing um a waistband since he was.
• 41:14
  SPEAKER_01: How old are you, bud?
• 41:16
  SPEAKER_04: It's soundproof glass.
• 41:20
  SPEAKER_01: Probably since he was about three.
• 41:22
  SPEAKER_01: Yeah.
• 41:22
  SPEAKER_01: And obviously, kids are growing very fast.
• 41:25
  SPEAKER_01: So, what a lot of people don't realise is if you've got a child and they qualify for it on prescription, you don't need to wait a whole year to get another set and a bigger size, what I do, as as soon as they are too tight for him and he looks uncomfortable.
• 41:38
  SPEAKER_01: I'll get on the phone and go, right, please come out for the next side up because he's growing and he's whatever.
• 41:42
  SPEAKER_01: Like, yeah, absolutely, and there's never a problem.
• 41:44
  SPEAKER_01: But again, you wouldn't know that for sure.
• 41:46
  SPEAKER_04: So Yeah.
• 41:48
  SPEAKER_01: Yeah.
• 41:49
  SPEAKER_01: That was good.
• 41:50
  SPEAKER_01: So, what would you say has been your greatest moments with a stoma?
• 41:54
  SPEAKER_01: The marathon must be up there.
• 41:55
  SPEAKER_04: Yeah, 100%.
• 41:56
  SPEAKER_01: That's uh that was your face in those clicks.
• 41:59
  SPEAKER_01: Oh, and seeing Jess in the crowd.
• 42:03
  SPEAKER_04: No, it was great.
• 42:04
  SPEAKER_04: Um, yeah, definitely that's uh if you don't have a stoma, just I think completing the marathon is great.
• 42:08
  SPEAKER_04: Apparently, you're in the 1% of all people that have in the world.
• 42:12
  SPEAKER_01: Well, it's hard to get on it for starters.
• 42:13
  SPEAKER_04: I mean, yeah, yeah, yeah.
• 42:15
  SPEAKER_01: For those of you that don't know, you don't just get to oh yeah, I'm gonna do it, and you get on and that's it.
• 42:20
  SPEAKER_01: It's uh it can take years to get a place.
• 42:22
  SPEAKER_04: I fortunately was given a place through um a charity.
• 42:25
  SPEAKER_04: Um Which charity was it?
• 42:27
  SPEAKER_04: UK.
• 42:27
  SPEAKER_04: Uh they they said we've got a place.
• 42:30
  SPEAKER_04: Do you want it?
• 42:30
  SPEAKER_04: I said, Yeah, bite your hand off to do it.
• 42:32
  SPEAKER_04: Oh brilliant.
• 42:32
  SPEAKER_04: Um and then yeah, a lot of it is the training, like, you know, oh great marathon, the day is amazing.
• 42:40
  SPEAKER_04: I would recommend it so much.
• 42:41
  SPEAKER_04: Honestly, it's it's it's you said, you know, you you meet up with ambassadors and stuff like that, and you want to get a tattoo.
• 42:46
  SPEAKER_04: When I finished the marathon, what did you want to get?
• 42:48
  SPEAKER_04: Yeah, I was like, oh my god, I'll do it again.
• 42:50
  SPEAKER_04: I'll do it again.
• 42:51
  SPEAKER_04: Great.
• 42:51
  SPEAKER_04: I even ran off to a pub, and my mate's like, what are you doing?
• 42:54
  SPEAKER_04: Why are you still running?
• 42:55
  SPEAKER_01: Um the adrenaline is insane.
• 42:58
  SPEAKER_01: I mean, I've only done a half one and I'm training for one in October coming up now, but yeah, it's um you can't beat it, can you?
• 43:04
  SPEAKER_04: No, you really can't.
• 43:05
  SPEAKER_04: But yeah, all the training, that's the that's the hard part because it's always in the winter, it's freezing cold, and you're like, right, what am I gonna do on Saturday morning?
• 43:12
  SPEAKER_04: I've got to run for two and a half hours over there and then come back.
• 43:16
  SPEAKER_01: How much did you raise?
• 43:17
  SPEAKER_04: Uh I raised over I think 2,250 pounds from a minute.
• 43:21
  SPEAKER_01: That's incredible.
• 43:22
  SPEAKER_04: Something like that.
• 43:22
  SPEAKER_04: Yeah, I mean, fortunately, you know, uh lots of people are very, very overly generous, like, you know.
• 43:27
  SPEAKER_01: Well, the I mean, it's not to be done easily, is it?
• 43:30
  SPEAKER_01: I mean, my gosh.
• 43:32
  SPEAKER_04: It's it yeah.
• 43:32
  SPEAKER_04: I couldn't do it.
• 43:33
  SPEAKER_04: But then the day, like, you turn up, you get to Blackheath, you stand there, you wait for your little time slot.
• 43:40
  SPEAKER_04: And I when I wrote, they said, Oh, you know, how long are you gonna do it?
• 43:42
  SPEAKER_04: And I was like, I don't know, four, four and a half hours.
• 43:46
  SPEAKER_04: All my friends who've done marathon said, treat the first one as a fun run.
• 43:49
  SPEAKER_04: Just enjoy it.
• 43:51
  SPEAKER_04: Because if you go, right, I wanna do it in three and a half hours or whatever, you'll be so focused on a time that you're gonna get so exhausted.
• 44:00
  SPEAKER_04: That when you get to the end, just run and enjoy it.
• 44:02
  SPEAKER_04: Just dr like literally have the atmosphere and all that.
• 44:04
  SPEAKER_04: So on the day, had my stoma belt on.
• 44:07
  SPEAKER_04: Um had a Did you have your flange extenders on?
• 44:10
  SPEAKER_04: No, I didn't know.
• 44:11
  SPEAKER_04: Didn't I?
• 44:12
  SPEAKER_01: So how did your bag feel after it compared to the stuff?
• 44:15
  SPEAKER_04: Fine, fine, fine, yeah.
• 44:16
  SPEAKER_04: I mean, a lot of the time when you are running, if the bag moves a lot, that's when you can get some blood in your bag and stuff like that.
• 44:21
  SPEAKER_04: But that's nothing to worry about, it's because you know your stoma's got a lot of capillaries in it.
• 44:25
  SPEAKER_04: Um, but yeah, I had my little bum bag with all my like gels in and sweets and stuff like that.
• 44:30
  SPEAKER_04: But the whole course was just lined with people.
• 44:33
  SPEAKER_04: And there's no greater feeling than if you're doing an event like that and sorry, people are cheering you on because I had my name and I was like, come on Anne!
• 44:41
  SPEAKER_01: Oh yeah, yeah.
• 44:42
  SPEAKER_04: So good.
• 44:43
  SPEAKER_04: There's people going, Ann, do you want a beer?
• 44:45
  SPEAKER_04: Finish the race! And you're like, Thanks, mate.
• 44:48
  SPEAKER_04: There was one guy that I have to give a special shout out to, John O, wherever you are listening.
• 44:52
  SPEAKER_04: Um, when I got over Tower Bridge, it was halfway, um someone uh started like grabbing me, and but I was like, what the hell is going on?
• 45:01
  SPEAKER_04: There was a guy who was running for Crohn's colitis, and he was like, Anne, Anne, it's you, oh my god! And I was like, What is it?
• 45:11
  SPEAKER_04: Who are you?
• 45:12
  SPEAKER_04: He was like, I follow you, all these things, he do amazing stuff, all these sorts of things.
• 45:17
  SPEAKER_04: Oh cried, and then I was like, honestly, thank you so much.
• 45:21
  SPEAKER_04: Like, we got a photo self, we cannot running.
• 45:24
  SPEAKER_04: And then the amount of people you run past who are also like either Crohn's acolyte sufferers or who knew of me, were like, I follow you.
• 45:32
  SPEAKER_01: And I was like, Oh, that's so cool!
• 45:34
  SPEAKER_04: Yeah, I mean you needed any more encouragement, but no, no, honestly, it was it was crazy.
• 45:38
  SPEAKER_04: I mean, that you know, I'm not a celebrity, but I imagine that's how celebrities would feel if they're in public.
• 45:44
  SPEAKER_01: Oh, of course you are.
• 45:46
  SPEAKER_01: Of course you are.
• 45:47
  SPEAKER_04: It was crazy, but that that in itself is yeah, is is is is one of the you know real highlights.
• 45:52
  SPEAKER_04: And I will say as well, I'm not saying it's just because I'm on this podcast, is actually being an ambassador for um such an incredible uh brand and and and everything with with Ekin and Pelican Respond because when I started this, it was all about how can I raise awareness.
• 46:08
  SPEAKER_04: And this is kind of the cherry on top to say you're doing this and you're promoting a lot of products, advice, and I I get to then connect with even more people.
• 46:18
  SPEAKER_04: And I think for me that's you know, when I was invited to all the testing at the start, like this is a new bag we're gonna bring out, and I was like, oh, this is incredible.
• 46:27
  SPEAKER_01: It's important to remember as well, like we don't just we're not promoting just anything, we only promote what we use.
• 46:34
  SPEAKER_04: 100%.
• 46:35
  SPEAKER_04: And I'm not sure.
• 46:35
  SPEAKER_01: It's not like we're being sent all these products in the post and gone, can you please post about this?
• 46:40
  SPEAKER_04: Yeah.
• 46:41
  SPEAKER_04: Unless you want to send us to Monaco or somewhere like that.
• 46:43
  SPEAKER_04: Oh yeah, yeah, yeah.
• 46:44
  SPEAKER_01: I mean the next ambassador meetup, if unless it's in somewhere like that, I ain't going.
• 46:48
  SPEAKER_04: Yeah.
• 46:48
  SPEAKER_04: Thanks, Jeremy.
• 46:49
  SPEAKER_04: Appreciate it.
• 46:52
  SPEAKER_04: But yeah, I think uh you know, I'm sure there's several other like achievements for the stoma, but I think just the just being happy and healthy.
• 47:02
  SPEAKER_04: That should be an achievement in itself, like not having what you had before.
• 47:05
  SPEAKER_04: Yeah, yeah.
• 47:05
  SPEAKER_04: Do you see what I mean?
• 47:06
  SPEAKER_04: And that doesn't get sort of praised enough.
• 47:08
  SPEAKER_00: It doesn't, no.
• 47:09
  SPEAKER_00: I mean, what advice would you give to you know to someone who is struggling to accept their stoma?
• 47:15
  SPEAKER_04: Um if I'm honest, if you are on social media or whatever, just start reaching out to people.
• 47:20
  SPEAKER_04: You'll feel free to reach out to any of us here, like if you guys are more than happy to, but just start talking to people because you're not the only person feeling that way.
• 47:28
  SPEAKER_04: It can be very isolating and you can feel very, very alone.
• 47:31
  SPEAKER_04: But as soon as you start talking to people about it and you start seeing people promoting their bodies or saying, This is my bag or whatever, you then will at least you'll start to see it and be like, Okay, it's not that bad.
• 47:43
  SPEAKER_04: And that's all that I've tried to do is say, It's not as bad as you think.
• 47:46
  SPEAKER_04: It's like anything.
• 47:47
  SPEAKER_04: If you try something new for the first time and you're unsure about it, if you start speaking to people about it, your fears will be exactly what the same that someone else has already gone through.
• 47:56
  SPEAKER_00: I mean, reaching out to people on social media is great.
• 47:59
  SPEAKER_00: You're always gonna have uh three or four sides of the quiz.
• 48:02
  SPEAKER_00: So those that are absolutely great and amazing, those that are really, really bad and this is the worst thing I could have ever done.
• 48:08
  SPEAKER_00: Then you've got those that are open and honest and just post good and bad, and then you've just kind of got the in-between where people uh say that they've got a stomach bag but they don't like post.
• 48:19
  SPEAKER_00: They don't want to show, which is which is absolutely fine, but that there there is still that taboo.
• 48:25
  SPEAKER_04: But there always will be though, because it's uh you're pooing into a bag.
• 48:28
  SPEAKER_01: Yeah, but the whole point.
• 48:28
  SPEAKER_01: Well, people don't like talking about pooing.
• 48:30
  SPEAKER_04: Yeah.
• 48:31
  SPEAKER_01: Then you're pooing in a bag.
• 48:32
  SPEAKER_00: Yeah, but I mean isn't the whole point of what we're doing to raise awareness and to try and get rid of that taboo, of course.
• 48:38
  SPEAKER_04: It'll always be there, though.
• 48:39
  SPEAKER_04: It'll always be there.
• 48:40
  SPEAKER_04: You just got we just gotta keep doing what we're doing, keep flying the the poo bag flag.
• 48:43
  SPEAKER_04: Yeah.
• 48:45
  SPEAKER_01: Pooh bag flag! I like that.
• 48:47
  SPEAKER_01: Pooh bag flags.
• 48:48
  SPEAKER_04: Well, that could be these could be the colours.
• 48:50
  SPEAKER_01: Yeah!
• 48:51
  SPEAKER_04: See?
• 48:51
  SPEAKER_04: Oh, I thought about this clearly on the book.
• 48:53
  SPEAKER_00: That can be for the Christmas party.
• 48:54
  SPEAKER_04: Poo bag flag.
• 48:55
  SPEAKER_00: That can be the slogan.
• 48:56
  SPEAKER_00: So Ben said to me the other way something about my party trick with um the stuff that's coming out of my stomach, because obviously the veg some of the veg that we eat still comes out, and I'm like, no, that's just that's just going a bit far.
• 49:06
  SPEAKER_01: I mean, who who anyone that says they have to be able to do that?
• 49:10
  SPEAKER_01: Don't play with the bag round.
• 49:13
  SPEAKER_01: Have you not done that?
• 49:14
  SPEAKER_04: My bag's not that big.
• 49:15
  SPEAKER_01: Well, no, it's mine, but like surely it's a little bit of a a party.
• 49:19
  SPEAKER_04: I know, I'll just sort of dance or fluff around a bit.
• 49:22
  SPEAKER_01: Exactly, yeah, yeah, yeah.
• 49:23
  SPEAKER_00: I mean, I can't do that.
• 49:24
  SPEAKER_00: My output's like liquid, and then it'll be time, so everything goes through me quite quickly.
• 49:30
  SPEAKER_00: So there'll be times where over night time I've I'm just running about in like a big baggy t-shirt and my knickers and my bag out, and I'll go to stand up and all you can hear, you know, like when you when you water bottle, that's what it sounds like, and I can just see Ben going me and Jake actually, we quite, if we like full of ear, we kind of like to check the acoustics of our bag.
• 49:51
  SPEAKER_01: Nice.
• 49:52
  SPEAKER_01: And we'll use it as an instrument, so we'll be like flopping along.
• 49:55
  SPEAKER_01: It sounds wonderful, yeah, yeah.
• 49:56
  SPEAKER_01: Yeah, that's that's the only thing, the only thing that don't want to do that first thing in the morning.
• 50:01
  SPEAKER_01: That's it.
• 50:03
  SPEAKER_01: It's beautiful, it really is, honestly.
• 50:05
  SPEAKER_01: It's quite wonderful.
• 50:06
  SPEAKER_01: You can't get that on a guitar.
• 50:07
  SPEAKER_01: Imagine tapping that first thing in the morning when it's that that blows.
• 50:10
  SPEAKER_01: That's what I was about to say.
• 50:11
  SPEAKER_01: It's like in the back of the water.
• 50:11
  SPEAKER_01: Well it gives a different meaning to the word tap that, doesn't it?
• 50:14
  SPEAKER_04: Tap that, yeah, tap that Yeah, right, because it does.
• 50:22
  SPEAKER_01: Smack that.
• 50:23
  SPEAKER_01: Smack that.
• 50:23
  SPEAKER_01: Smack that.
• 50:24
  SPEAKER_01: But that's not what we're on about, is it?
• 50:26
  SPEAKER_01: Really?
• 50:27
  SPEAKER_01: Again, that's the after I went to the best always.
• 50:30
  SPEAKER_04: There's a watershed somewhere.
• 50:32
  SPEAKER_04: It's got to be broadcast after nine people.
• 50:34
  SPEAKER_00: It's always a really good note to end on.
• 50:36
  SPEAKER_00: Always end it on a bit of humour rather than a bit of something.
• 50:39
  SPEAKER_00: Smack that stoma.
• 50:40
  SPEAKER_00: Yeah.
• 50:41
  SPEAKER_01: No, don't do that.
• 50:42
  SPEAKER_01: No, don't.
• 50:43
  SPEAKER_04: There's no nerve ending on it, but don't do that.
• 50:46
  SPEAKER_04: Unless that's something that you like about it.
• 50:49
  SPEAKER_00: Whenever my bag does balloon, I always think of the Arctic Monkey song up up and away.
• 50:53
  SPEAKER_00: Oh, right, yeah, yeah, yeah.
• 50:55
  SPEAKER_04: Stop doing that, so sorry everyone I'm just floating away.
• 50:59
  SPEAKER_00: Do you not find though that when your bag does blow up like that and you do try to get out of bed?
• 51:03
  SPEAKER_00: Oh, it's impossible.
• 51:05
  SPEAKER_00: You do that walk.
• 51:07
  SPEAKER_04: You have to turn yourself into some sort of contortionist to be like, I need to do this without it exploding.
• 51:11
  SPEAKER_04: Half human, half crab.
• 51:12
  SPEAKER_04: Yeah.
• 51:13
  SPEAKER_04: Just go like that.
• 51:14
  SPEAKER_01: Do you ever get it where like, so I find if I I'm eating later at the moment for some reason, much later than I used to, so I'm having to get up in the night to empty, which I never really had to do.
• 51:23
  SPEAKER_01: But I'll I'll wake up in the night, realise my bag's really full and think, oh, has it popped?
• 51:28
  SPEAKER_04: Oh, has it, you know, because you just But then you have the bargaining going, it's not that bad.
• 51:33
  SPEAKER_04: Yeah! I can get another half hour, I reckon.
• 51:36
  SPEAKER_04: And then you wake up going, oh no, no, I should have just gone.
• 51:39
  SPEAKER_00: I remember your argument for getting um 100% Egyptian cotton sheets on prescription and uh do no-doo face a year.
• 51:47
  SPEAKER_00: Yeah.
• 51:49
  SPEAKER_00: Yeah, well, I try and get as much as you can, but anyway, I think I think we're uh we we'll wrap that up there.
• 51:55
  SPEAKER_00: So Ants Ants petition, 100% Egyptian cotton sheets on prescription.
• 52:00
  SPEAKER_04: That wouldn't be Egyptian cotton, just can we get some free bedding?
• 52:05
  SPEAKER_01: Actually, someone in your status could scab some free bedding.
• 52:08
  SPEAKER_01: Yeah, well, yeah, yeah.
• 52:09
  SPEAKER_04: As long as it's clean, I don't want old bedding.
• 52:12
  SPEAKER_04: Or used bedding.
• 52:13
  SPEAKER_00: So we'd like to thank you for listening to Beyond the Pouch.
• 52:17
  SPEAKER_00: We hope you have enjoyed uh listening and took away some valuable moments from and our guest on Well Dostamy Day.
• 52:25
  SPEAKER_02: Yeah, thank you so much.
• 52:26
  SPEAKER_00: And um thank you so much.
• 52:29
  SPEAKER_00: It's always been a pleasure.
• 52:31
  SPEAKER_00: And um yeah, we'd love to know your greatest moments, and um, we'll see you again next time.
• 52:38
  SPEAKER_04: Yeah, thanks a lot, guys.
• 52:39
  SPEAKER_04: See you soon.