Latest / Beyond the Pouch / E1: Navigating the Stoma World

Transcript

E1: Navigating the Stoma World · Beyond the Pouch

0:01
SPEAKER_00: Hi guys, welcome to Beyond the Pouch, a podcast series brought to you by Pelican, Ekin, and Respond with your hosts, Rachel and Louise.
0:09
SPEAKER_00: Dive into the world of ostomy through open and honest conversations, including the lives of many inspirational ostomates that we're lucky enough to call our friends.
0:18
SPEAKER_00: So you can get to know them beyond the pouch.
0:20
SPEAKER_00: Hi guys, and welcome to the first episode of Beyond the Pouch.
0:24
SPEAKER_00: We are so excited to be here.
0:26
SPEAKER_00: I am reunited with my OG to host this podcast, and I'm very excited.
0:32
SPEAKER_00: Um I'm Rach.
0:33
SPEAKER_02: I'm Louise, and you're so much more excitable than me.
0:38
SPEAKER_02: Um, so we will be the hosts of Beyond the Pouch.
0:41
SPEAKER_02: The first topic we will be discussing is navigating the stoma world.
0:46
SPEAKER_02: We'll be opening up about our stoma stories, including like navigating stoma life as a general whole, to which we have plenty of experience with, I think, would be the correct choice of phrase.
0:59
SPEAKER_00: So, do you want to tell the good people about yourself?
1:02
SPEAKER_00: Why have you got a stoma?
1:04
SPEAKER_01: Uh Crohn's.
1:05
SPEAKER_02: Well, no, my first one wasn't because of Crohn's disease, it was actually because of a C-section.
1:09
SPEAKER_02: They perforated my bow.
1:11
SPEAKER_01: Oh yeah.
1:12
SPEAKER_02: It was my second and third.
1:13
SPEAKER_00: Which people wouldn't think of being the cause of a stoma, would they?
1:17
SPEAKER_00: You'd never think that would be a risk.
1:18
SPEAKER_02: It's quite a popular reason.
1:20
SPEAKER_00: Is it?
1:20
SPEAKER_02: Yeah.
1:21
SPEAKER_02: Wow.
1:22
SPEAKER_02: Stoma chameleon.
1:23
SPEAKER_02: Hers was Oh.
1:25
SPEAKER_02: No, though, her hers was because of a C-section as well.
1:28
SPEAKER_02: And she says it doesn't get spoken often about often.
1:30
SPEAKER_00: No, no, not enough.
1:31
SPEAKER_00: Not at all.
1:32
SPEAKER_00: It's just one of those risks, really.
1:34
SPEAKER_01: Yeah.
1:35
SPEAKER_00: Well, mine was brought on well, born with Hirschsprung disease, which isn't well known at all.
1:42
SPEAKER_00: Because I found definitely when I went on Instagram and I started Gutsy.mum, it was to connect with other parents who had kids with stomas, because at the time I didn't have mine, but my little boy was born with the same condition and had to have his.
1:54
SPEAKER_00: And um yeah, it's um that opened up a whole world of different reasons for stomas that I never knew about, but I found it was predominantly IBD.
2:06
SPEAKER_02: And because I remember speaking to you because when you first came onto the scene, which was just after your scene.
2:13
SPEAKER_02: Yeah, but it was, it was after your stoma surgery.
2:15
SPEAKER_02: And I remember saying to you, Oh, did you do a presentation about your little boy with a stoma with regards to Hirschsprungs?
2:23
SPEAKER_02: Because I've gone to a lot of charity events and presentations, I've seen a lot of parents talking about their children that have had surgery, so have had a stoma placed because of Hirschbrungs, but you don't really see adults.
2:35
SPEAKER_00: No, no one tends at all.
2:36
SPEAKER_00: And it's a bit it's a it's a weird one because lots of parents have different viewpoints about how much they want to share of their children.
2:44
SPEAKER_02: Which I think's I I think the way that you've protected Jake through what you've done is great because I don't think children should be pastored all over social media because as they get older they might have a different Well, I want him to like me for one and not resent me as a mum.
3:00
SPEAKER_00: And he's my only option for looking after me when I'm old and grey at the moment, so I really need to keep up, you know, cool mum vibes.
3:06
SPEAKER_00: That's why I'm nice to Maisie.
3:08
SPEAKER_02: Little granny annex when I'm older.
3:13
SPEAKER_00: But um, yeah, so how long have you had your stoma for then?
3:17
SPEAKER_02: Is it have you only had one?
3:19
SPEAKER_02: No, I've had three.
3:20
SPEAKER_02: So my first one I had from 2009 to 2012, then I had a resection, so I wasn't put back together, but I also had plastic surgery, had a new mesh mesh put in and a few other bits and pieces at the time.
3:34
SPEAKER_02: Um and then in 2016, my Crohn's my peri my perianal Crohn's disease come back full, full, full whack.
3:43
SPEAKER_02: So my Crohn's has kind of gotten like microscopic, so mine's not just on the inside of the bowel anymore, it goes all the way through and it started attaching itself to other bits and pieces.
3:52
SPEAKER_02: Can it do that?
3:53
SPEAKER_02: Yeah.
3:54
SPEAKER_02: Wow.
3:54
SPEAKER_02: Um, so I had the temporary stoma placed in 2016, so I had my loop because I wasn't strong enough to go through the entirety of the proctectomy surgery because it took nine hours just to do the temporary stoma and take out some adhesions and scar tissue.
4:08
SPEAKER_02: So when I went and had my proctectomy surgery in 2018, the reason why you guys didn't see me on social media for a few days is because I kind of went straight downhill after having my surgery done, and I went on the missing list for six hours because they had to get everything back under control to get me back up onto intensive care for obviously Ben and my mum to see me at the time because I wasn't good because um I'd gone septic again.
4:33
SPEAKER_02: So, and then obviously I had the post-op Ilias and I was in for nearly three weeks, I think, when I had the protectomy.
4:39
SPEAKER_02: God, you've been through so much, or you can just kind of try and have a bit more of a positive outlook to life and just kind of get on with it.
4:48
SPEAKER_02: Don't get me wrong, I could be a mess somewhere in the background, but that's what counselling's for.
4:53
SPEAKER_00: God bless counselling, yeah.
4:55
SPEAKER_00: Which again, that's another topic entirely that we could talk about for hours and hours.
5:00
SPEAKER_00: Why on earth it is not offered hand in hand, which should be.
5:04
SPEAKER_00: It is insane.
5:05
SPEAKER_02: It's it's like because people say, Oh, it's better to have a what they call an elective.
5:13
SPEAKER_02: But the thing is, pe people or the this is the thing that gets me as well.
5:18
SPEAKER_02: I don't think the term elective with regards to having surgery isn't understood.
5:22
SPEAKER_02: Elective doesn't mean that you've elected to have that surgery.
5:25
SPEAKER_02: Elective just means that they've been able to plan it better versus having an emergency stomach.
5:30
SPEAKER_00: Yeah, so mine would would be counted as elective.
5:34
SPEAKER_00: So I was so I was born with Hirsprung's disease, so that's where the ganglion cells that line the intestine they don't develop properly in the womb, and then you're born, you can't pass the meconium, which is the first poo a baby does.
5:46
SPEAKER_00: Um, your tummy distends because you can't pass out waste, and then they do a rectal biopsy to confirm whether it's Hirsbrung's disease or not.
5:54
SPEAKER_00: So um, yeah, then you have bowel washouts until you are a couple of weeks old, and then you have stoma surgery.
6:00
SPEAKER_00: So I had my reverse when I was two and a half, but it is the worst thing they could have done because childhood was just awful with a j pouch.
6:07
SPEAKER_00: And j pouch is another touchy subject, isn't it?
6:10
SPEAKER_00: Because some people rave about it, are so glad they had it done.
6:13
SPEAKER_00: But equally, there's a lot of people that have had awful experiences with it.
6:17
SPEAKER_00: And I don't really share a lot of that because I, you know, you want people to find out for themselves, make their decisions for themselves, and you don't want to affect people's opinions and worry them.
6:29
SPEAKER_00: Uh so in 2016 I had my little boy, uh, and well, I suppose similar realm of like, so yours was brought on by a C-section.
6:38
SPEAKER_00: I had a planned C-section because of all my bowel surgeries, but it was the weight of carrying him that completely messed me up and then left me unable to walk without being in pain.
6:47
SPEAKER_00: And then I had my stoma surgery in the first lockdown, actually, which was actually dreamy because I had to go into a private hospital to have it because all the COVID patients were in the state run one.
6:59
SPEAKER_00: So that sounds idyllic.
7:01
SPEAKER_00: It was lush, proper lush, yeah.
7:04
SPEAKER_02: Anybody that's been on a GI surgical board knows how nice a private room is.
7:09
SPEAKER_00: Oh, yes, it was amazing.
7:12
SPEAKER_00: Loved it.
7:12
SPEAKER_00: But yeah, so I've had a stoma, had it reversed, had a J pouch, had another stoma, and now I'm I honestly, if someone came up to me and was like, we could take your stoma raid today, I'd be like, back off.
7:22
SPEAKER_00: No, you are not taking this from me.
7:24
SPEAKER_00: I would never ever go back to pre-stoma life because I've never, never felt so good in my own skin.
7:32
SPEAKER_00: I don't know how you feel about that.
7:34
SPEAKER_02: Uh it's a bit hit and miss.
7:35
SPEAKER_02: I hated my first stoma.
7:37
SPEAKER_02: It was horrendous.
7:38
SPEAKER_02: I was leaking.
7:38
SPEAKER_02: Obviously, I had an open wound.
7:40
SPEAKER_02: It was on a post part from tummy as well.
7:42
SPEAKER_02: And obviously, because I'd had all the muscles removed, everything was just kind of like flapping about, I think was the lush.
7:48
SPEAKER_02: So wearing support is why I have such a hate hate for like support shorts.
7:53
SPEAKER_02: It's because I had to wear them and I literally had a better front bottom than I did at the back because the shorts used to push it kind of all together, so it kind of looked like a look like I had to put them on my tummy.
8:03
SPEAKER_02: Oh, lovely.
8:04
SPEAKER_00: Well, I think a lot of us can relate to that.
8:06
SPEAKER_00: Like those of us that have been cut down the middle of the stomach and then had stomas, like mine.
8:11
SPEAKER_00: I always just say looks like a hot crossburn.
8:13
SPEAKER_00: That's what I used to say when I was a kid.
8:14
SPEAKER_02: I just never had keyhole surgery.
8:16
SPEAKER_02: Every surgery I've had has been open.
8:19
SPEAKER_02: And I think it's because of scar tissue, the amount of adhesions that I've got in there.
8:23
SPEAKER_02: Keyhole surgery.
8:24
SPEAKER_00: Do you find that when you have a few scars anymore?
8:26
SPEAKER_00: It's just like, oh.
8:27
SPEAKER_00: It's just another one.
8:28
SPEAKER_00: Like, you know, like I mean, I've lost count.
8:32
SPEAKER_02: I mean, I can understand the impact that it might have on people with regards to body images as a general whole.
8:38
SPEAKER_02: I mean, especially if you're young.
8:40
SPEAKER_02: I mean, I was 24 when I had my first Omar.
8:44
SPEAKER_02: I had it reversed at 27.
8:49
SPEAKER_02: And then I had the next one placed.
8:51
SPEAKER_02: How old was I when 200?
8:53
SPEAKER_02: I was 31.
8:54
SPEAKER_02: So but the thing was having an ileostomy was always on the cards for me.
8:59
SPEAKER_02: It was it was something that was going to happen.
9:02
SPEAKER_02: It was just better to have it done as more of a of an elective, so my Crohn's was getting bad, but I wasn't at DEF CON 1.
9:09
SPEAKER_02: And having that surgery rather than having to go in for an emergency surgery, because emergency surgery for me is the worst thing to be done because it takes them a good few hours to get in me just to get me open without and I suppose all that scar tissue, yeah.
9:22
SPEAKER_02: Gosh, I just I don't regret it, but there are times obviously, given obviously how fast my bowel transit is because of how high up my stoma is.
9:33
SPEAKER_02: And you know, if I have another surgery, then obviously I'm going to do genostomy territory, which is then TPN, hip and line, oh yeah, and everything else.
9:41
SPEAKER_02: So it does make me wonder if my Crohn's does kick off, what do I do?
9:45
SPEAKER_01: Yeah.
9:46
SPEAKER_02: But then I've got the other issues at the moment with the if you so I've had protectomy surgery and I've got as a result of the protectomy, the Crohn's disease, and the endometriosis, I have a massive inclusion cyst.
9:59
SPEAKER_02: It starts behind my stoma and goes down into my uterus.
10:05
SPEAKER_02: I've got to go for an MRI in July, and then I've already been told I can't have it drained or aspirated, I can't have a permanent drain put in because I'm too much of a risk because of the amount of times I've had sepsis.
10:18
SPEAKER_02: So the next surgery I have, I could also possibly wake up with a urostomy.
10:22
SPEAKER_02: Now that's a bit more scary for me, just because that was never on the cards, and my next door neighbour has a erostomy, and she's not had a great time with it, and I'm a bit like, well, what if that happens to me?
10:35
SPEAKER_00: Yeah, and it's hard, isn't it, when you, you know, you try and there's been a lot of stuff on Instagram lately about like toxic positivity in there.
10:44
SPEAKER_00: And like I know we're both people that look at the positives, we find the positives in the bad.
10:50
SPEAKER_00: But then at the same time, I feel we are responsible for the content we put out.
10:54
SPEAKER_00: And I feel like we both really take time and effort and really think about what we're putting out and why and who's gonna listen to it.
11:02
SPEAKER_00: Um, and we do both share the bad and the good, but also I'm very conscious that's that's a realistic approach to life at the end of the day.
11:10
SPEAKER_02: Not everything is all la la la and unicorns and rainbows and at all.
11:14
SPEAKER_00: But also I do worry that if I share something, like the J Pouch example, if I go in too much detail about how negative it was, I do not want to upset some young person in their early 20s who suddenly found out they've got to have one, and then maybe affect their decision.
11:29
SPEAKER_00: Like you just said, your neighbour has a erostomy and they've had, you know, you're so you're already thinking, ooh, I don't want to be like that.
11:36
SPEAKER_00: But then I think that's why it's important to when you are connecting with people on social media, if you see a bad like look at a range of people, a range of backgrounds, get the whole picture, don't just hone in on those negative stories you hear.
11:50
SPEAKER_00: Because it's not, it's you know, everyone is so different.
11:52
SPEAKER_00: I don't know, like we've both connected with so many people through working with Pelican and Respond through campaigns and our ambassador roles.
11:59
SPEAKER_00: And there's not one of us that's anywhere near the same in terms of our experiences, is there?
12:04
SPEAKER_02: No, but at the same time, it's I agree what you're saying about the toxic positivity, but at the same time, you we've been chastised for being truthful.
12:21
SPEAKER_02: It's you know, it's it's it's hit and miss with anything.
12:25
SPEAKER_02: Yeah.
12:25
SPEAKER_02: Social media will always have its good points, but it will also always have its bad points as well.
12:30
SPEAKER_00: You can't please everyone, can you?
12:32
SPEAKER_00: You're gonna offend someone along the way, and as long as you're happy and you go to sleep with a clear conscience, I think that's all that matters.
12:38
SPEAKER_00: I can confirm the amount of Facebook bans I got during lockdown.
12:42
SPEAKER_00: There's a lot of people out there that are getting bans.
12:44
SPEAKER_00: A lot of people.
12:45
SPEAKER_00: But and unfortunately, some of them are so invalid, it's unreal, for just sharing how you are and trying to help people.
12:54
SPEAKER_00: It's you know, there's a lot of work to be done there with that in there.
12:57
SPEAKER_02: It's just about navig it's just about navigating life though, isn't it?
13:00
SPEAKER_02: It's it's it's the same as like now navigating stoma life and navig navigating life, you know, with with a stoma, and then navigating social media because of what we do to raise awareness and it's I mean, how lucky are we that we've been given this opportunity?
13:19
SPEAKER_02: We are incredibly lucky, but there's also a lot of work that goes into it that people don't realise of what work that's been put into behind the scenes from from making the bags to the campaigns that are being done, and it people are just seeing pretty pictures when they don't see the amount of effort that is put in behind it with regards to marketing, the concept of the idea, or even just us promoting our promoting ourselves.
13:48
SPEAKER_02: We have to put a lot of thought and effort into that because we don't just go, Oh well, I know what I'm going to do today, I'm just gonna post a selfie.
13:56
SPEAKER_00: Um so how many years have we been doing this now?
13:58
SPEAKER_00: I mean, you're the O G.
14:01
SPEAKER_00: Oh, 2017.
14:03
SPEAKER_00: Oh, so oh we it was the same time then, yeah.
14:05
SPEAKER_00: Because I started my account when Jake was a baby, um, and I was given Respond as the dispense company straight away.
14:15
SPEAKER_00: And yeah, I just started like sharing things about having a baby with a stoma because there was nothing out there, like there was nothing.
14:21
SPEAKER_00: You're given those booklets with those elderly people on the front.
14:25
SPEAKER_02: Those little diddly baby stoma bags.
14:28
SPEAKER_00: Oh, with the teddy bears on, I know.
14:30
SPEAKER_00: Oh well the thing is Jake's output was so high he couldn't even use them.
14:34
SPEAKER_00: He had to have adult stoma bags from day one.
14:36
SPEAKER_00: Oh, love him.
14:38
SPEAKER_00: I know.
14:38
SPEAKER_00: But no, they are cute.
14:39
SPEAKER_00: I mean, I'd like teddy bears on my bag.
14:44
SPEAKER_00: Didn't hint, nudge, nice bring.
14:45
SPEAKER_00: Wint hint pelican and respond.
14:49
SPEAKER_00: They're shaking their heads off.
14:51
SPEAKER_00: So I think it would be very beneficial to the people if you shared what your life's like now.
14:56
SPEAKER_00: I mean, you've had so many stomas, you've been through so much.
14:59
SPEAKER_00: What's it like now?
15:00
SPEAKER_00: Uh life's just crazy.
15:02
SPEAKER_02: I I don't know why I do it to myself.
15:03
SPEAKER_02: I put a lot of pressure on myself.
15:05
SPEAKER_02: So working part-time, doing a degree, driving down to Southampton every two weeks is always fun.
15:13
SPEAKER_02: Um I will have finished my exams by the end of September though, so and then I will have a break until January.
15:19
SPEAKER_01: Oh, nice.
15:20
SPEAKER_02: And then I will start the next last two years.
15:23
SPEAKER_02: Oh god.
15:25
SPEAKER_02: It's not easy, it's not easy being an accountant.
15:28
SPEAKER_02: But it'll be worth it when you get it done.
15:30
SPEAKER_02: It will be worth it.
15:32
SPEAKER_02: Um I think you know, having a chronic illness and managing my own expectations without always pushing myself, having the benefit of being able to work from home and choose how I work and when I want to work is a lot more beneficial to me.
15:50
SPEAKER_02: So I if I'm having a bad day, I can get all my work done in the morning and then I can go to bed.
15:55
SPEAKER_02: Yeah.
15:56
SPEAKER_02: Um, so I plan my days.
15:58
SPEAKER_02: Um, you know, my stoma was pretty well behaved until the cyst issues.
16:04
SPEAKER_02: Um, I've gone back to changing daily um just purely because my output is a lot more watery, but I also can't, I don't really have any control over my stoma at the moment.
16:16
SPEAKER_02: And those that are listening, it it's it's difficult with an iliostomy, with Crohn's disease, and then add in all the scar tissue and everything else.
16:26
SPEAKER_02: I've got a stricter at the top of my iliostomy, so I have to be careful with what I eat anyway.
16:33
SPEAKER_02: But it seems to be anything can cause a blockage at the moment.
16:35
SPEAKER_02: I can have a digestive biscuit and I'll have a partial blockage for a day or two days.
16:40
SPEAKER_00: You're not dipping it in your tea long enough.
16:41
SPEAKER_02: Oh, I'm not doing something, but it's it's because of the cyst, because the cyst is pushing my intestine flat, things are getting stuck, and it's only once the cyst decides to move itself that it opens back up and I can pass the blockage.
16:54
SPEAKER_02: And passing a blockage as anybody knows who's had one.
16:57
SPEAKER_02: Yeah.
16:58
SPEAKER_02: It's never fun.
16:59
SPEAKER_02: The first one is so scary, and it because you just don't know what's happening.
17:02
SPEAKER_02: Chicken skin.
17:03
SPEAKER_02: Chicken skin.
17:05
SPEAKER_02: So I had what, crispy?
17:07
SPEAKER_02: It was crispy, it was worth it.
17:10
SPEAKER_02: It was um so when I had my protectomy surgery, I went from an loop iliostomy to an end iliostomy.
17:17
SPEAKER_02: I had the post-op ilius, but I was so hungry when I got home from hospital because I hadn't eaten chicken skin.
17:22
SPEAKER_02: Well, I hadn't eaten properly for two weeks.
17:24
SPEAKER_02: That's weird.
17:25
SPEAKER_02: Yeah, but I got home.
17:27
SPEAKER_02: Ben cooked a small roast, so he didn't give me any potatoes, he'd just give me some like really overboiled carrots and some broccoli with a bit of chicken and some gravy.
17:35
SPEAKER_02: Yeah, he's put the chicken skin on my plate, it's totally slipped my mind.
17:39
SPEAKER_02: Yeah, that um, you know, I'm just like, wow, proper food that's not hospital food.
17:45
SPEAKER_02: Yeah.
17:45
SPEAKER_02: Oh my god, yeah, it was a good job.
17:47
SPEAKER_02: I had the high output bags at the time because oh god.
17:51
SPEAKER_02: Because anybody knows post-surgery output until it regulates itself.
17:57
SPEAKER_02: Actually, stained the floors with that.
17:59
SPEAKER_02: Oh, yeah.
18:01
SPEAKER_00: Yeah, the yeah, I mean, the bedroom carpet in my room, so when Jake was a baby and brought him home and all that and his high output, I mean it's like a m it's like a murder scene.
18:10
SPEAKER_00: I would not want to get one of those blue light things and shine it in that room.
18:14
SPEAKER_00: God knows what it would look like.
18:16
SPEAKER_00: Because the amount of output that is probably still deciding after cleaning is unreal.
18:22
SPEAKER_00: I even had carpet cleaners come in and they were like, Look, love, this ain't gonna go anywhere.
18:27
SPEAKER_00: I mean, they made it better, but my god.
18:29
SPEAKER_02: Nobody tells you just how careful you have to be emptying your stoma and just how much bleach and toilet cleaner and toilet wipes and bathroom wipes that you go through.
18:43
SPEAKER_02: I've actually contemplated so you know, like in the kitchen where you can get the splash backs, the plastic splash backs.
18:49
SPEAKER_02: Yeah, I'm actually contemplating putting them up in the putting that up in my downstairs bathroom, so paint the walls and then do the back and then do the back spash to a certain height because surely it's got to be clear easier to clean and wipe down plastic than wiping down paint.
19:04
SPEAKER_00: Yeah.
19:05
SPEAKER_00: I mean, and also people say, Oh yeah, I've got a stomach, I'm gonna save loads on toilet roll.
19:10
SPEAKER_00: Like hell, you will.
19:11
SPEAKER_00: Like hell you will.
19:13
SPEAKER_00: That is a lie.
19:14
SPEAKER_00: That is a big fat lie.
19:15
SPEAKER_00: Do you remember COVID lockdown and the toilet roll show?
19:17
SPEAKER_00: Did you?
19:18
SPEAKER_00: Yes! I mean, I was using kitchen roll.
19:21
SPEAKER_00: Yeah, but kitchen roll's better because it's more absorbent.
19:25
SPEAKER_00: I mean, like toilet roll is so thin.
19:27
SPEAKER_02: I mean, I don't know what brand you buy, but I was ordering it was ordering extra dry wipes and wet wipes on our respond to get a sweep of toilet roll.
19:36
SPEAKER_00: Thank God.
19:36
SPEAKER_00: Thank you very much, Pallican and Respond.
19:38
SPEAKER_00: Um, yeah, I mean, love the dry wipes, but I mean, during high output times, I'm gonna be doubling my order on them bad boys.
19:45
SPEAKER_00: I mean, they are good.
19:46
SPEAKER_00: Love 'em.
19:47
SPEAKER_00: Yeah.
19:48
SPEAKER_00: I always order two two two packs of dry wipes per box of ten.
19:53
SPEAKER_00: Oh, you rebel.
19:55
SPEAKER_00: They're gonna find you out.
19:57
SPEAKER_02: No, they know.
19:57
SPEAKER_02: I always I always ask, how many wipes would you have?
19:59
SPEAKER_02: Can I have two packs of wipes?
20:00
SPEAKER_00: How many can I have?
20:02
SPEAKER_00: And they say, Oh, give us an umbrella.
20:04
SPEAKER_00: Ten Is that for both of you?
20:07
SPEAKER_00: Is that just for you?
20:08
SPEAKER_00: I mean, uh that's the thing.
20:09
SPEAKER_00: I have a child.
20:10
SPEAKER_00: I, you know, I I need to make sure I get enough for him and me.
20:13
SPEAKER_00: So when I say the orders, it's ridiculous.
20:16
SPEAKER_00: And then when they get we so we I don't know if people realise, but if you've got two ostomates in the same household, you can clump your orders together so it comes at the same time.
20:24
SPEAKER_00: And the poor guy that delivers them, he's like, you know, he's got three massive bags.
20:30
SPEAKER_00: I mean, he God knows what he thinks I'm doing with all that stuff.
20:32
SPEAKER_00: I I should stop him really and say, There's another one of us, it's not all me.
20:35
SPEAKER_00: I mean, there's only so much output someone can have.
20:38
SPEAKER_02: Yeah.
20:40
SPEAKER_00: No, maybe.
20:42
SPEAKER_00: Yeah, I mean, you would think, wouldn't you, with the level of output that we have that like, you know, we'd be walking around starving all day.
20:49
SPEAKER_00: But I gotta say, I I'm never starving.
20:54
SPEAKER_02: What goes in must come out.
20:58
SPEAKER_00: Ooh, so what do you wish you knew before your surgery?
21:02
SPEAKER_00: Now, bearing in mind, we've haven't got a day to record this, so you can't say it after each surgery, then I don't know, because the first time I woke up with it, I didn't have a choice.
21:14
SPEAKER_02: I woke up, it was there.
21:15
SPEAKER_01: Oh.
21:16
SPEAKER_02: Did you know it was gonna happen?
21:18
SPEAKER_02: No, I was in a coma for three weeks, so I literally came round and was like, God, so what was going through?
21:25
SPEAKER_02: It wasn't that side, it was that side.
21:26
SPEAKER_00: So what was going through your head when you first saw it?
21:30
SPEAKER_02: I can't repeat on audio what I actually said.
21:32
SPEAKER_02: Right, well maybe like censor it.
21:35
SPEAKER_02: The medication uh might have made me a little uh a little away with it.
21:39
SPEAKER_02: Um I was just literally, what is that?
21:43
SPEAKER_02: Oh that was my thoughts.
21:46
SPEAKER_02: Was literally what have you done through the house?
21:47
SPEAKER_02: Could you see what was it like a could you see the stoma itself or just the bag?
21:52
SPEAKER_02: The problem that I had when I when I came round, because I had an open wound, uh the way that they'd done the night dress, they'd put a night.
22:00
SPEAKER_02: Night dress on half on one side and then half on the other side so they could close so they could tie it closed, but then open it because they had to change the dressings from the open wound.
22:09
SPEAKER_02: Oh, I hate that because the problem that I had because of where the open wound was, when they put a biological mesh in, the meshes actually see-through, so I could actually see my insides through the mesh.
22:24
SPEAKER_02: I mean, some people might deal with that, okay, but and a stoma, and so I was just a little bit like, what have you done to me?
22:30
SPEAKER_02: Oh my god.
22:31
SPEAKER_02: And people might think, How how can you just lay there and say, What have you done to me?
22:36
SPEAKER_02: I'll be honest, they were pumping that many drugs through me.
22:39
SPEAKER_00: Yeah, well, if all that was going on, you needed them, didn't you?
22:41
SPEAKER_02: So you know, you could have thought that it was a dream.
22:45
SPEAKER_02: And I think because I had Maisie to concentrate on and to get better for, my my end goal wasn't, oh, I'm going to be living stone alive.
22:53
SPEAKER_02: My end goal was to get home to be with my daughter because you know I was in hospital for three months.
22:58
SPEAKER_02: It's oh god.
23:00
SPEAKER_02: It's you know, and then I had my reversal, and I knew after my reversal that things weren't right, and it took me a very long time to get to the bottom because I transferred hospital.
23:11
SPEAKER_02: I moved to hospital because I lost faith in the old one.
23:14
SPEAKER_02: Yeah, um, it took a very long time to work out what the old hospital had actually done to me because my notes went, I think they ended up in a volcano somewhere.
23:22
SPEAKER_02: My original notes from my entire time at the first hospital have never materialised.
23:28
SPEAKER_01: Wow.
23:28
SPEAKER_02: Um, so it took obviously the hospital I'm under now a long time to work out what they'd actually done.
23:33
SPEAKER_01: Yeah.
23:33
SPEAKER_02: So when I had my surgery in 2016, I'd wrapped my head around it.
23:37
SPEAKER_02: I knew it was going to happen, and anything had to be better than being incontinent at you know, before the age of 30.
23:43
SPEAKER_02: Yeah.
23:44
SPEAKER_02: Yeah.
23:44
SPEAKER_02: Having to wear sanitary towels and whatever else and know where all the toilets were because I couldn't control myself.
23:49
SPEAKER_02: Yeah.
23:52
SPEAKER_02: You know.
23:54
SPEAKER_02: Think of your worst day and then think of your best day, and then just kind of find somewhere that's in the middle.
24:00
SPEAKER_00: Yeah, I mean, you're never gonna have you there's always gonna be ups and downs in there, it's never gonna be straightforward, but yeah, you've got to concentrate on the good.
24:09
SPEAKER_00: And I I really do believe in that.
24:11
SPEAKER_00: And like with Jake, he's you know, so my little boy's seven, he's got a stoma.
24:15
SPEAKER_00: And uh, because of the condition that I've got passed it on to him, it's it's genetically passed down.
24:21
SPEAKER_00: And um he's actually moved in the last few years from hating his bag and not wanting it because he wants to be like his mates, to now saying, no, I don't want to get rid of my bag.
24:33
SPEAKER_00: And it's it just even that little innocent mind is going through this torment of I want my bag because I don't want to have to go to the toilet because but it's the fear of the unknown for him, isn't it?
24:44
SPEAKER_02: Because he's had his stoma as long as what he has, it's now the fear of the on of the unknown, and obviously because you have a stoma that's made life easier for that's probably helped Jay accept his more because mummy has one too, so yeah.
24:58
SPEAKER_00: I mean, well, when I had my surgery, I hadn't had one since he'd been alive.
25:02
SPEAKER_00: So he was five when I had my surgery, and yeah, I remember getting home from the hospital, laying on the sofa.
25:10
SPEAKER_00: My mum brought him in and he was like, Oh, can I have a look at your bag?
25:13
SPEAKER_00: And he just looked, he went, Oh, okay, and he just ran off.
25:15
SPEAKER_00: And I was like, Not bothered then.
25:17
SPEAKER_00: Cheers, son.
25:18
SPEAKER_00: Like he's like looking at me like, What are you what are you lying down for?
25:22
SPEAKER_00: Get it, mum.
25:22
SPEAKER_00: Like, because to him, like you said, it's normal.
25:25
SPEAKER_00: Like, he does everything that a kid his age would do.
25:29
SPEAKER_00: He, yeah, he's he's amazing.
25:31
SPEAKER_00: He's anyway, I could talk about Jake all day, but I won't.
25:33
SPEAKER_00: Uh yeah, so I mean, we both have been part of the online community for years now, and it's hasn't it changed?
25:42
SPEAKER_00: So much.
25:44
SPEAKER_02: I mean, social media wasn't even about when I've had my first Omar, and then going into it sort of like Tell the people your age, Mike, because they might think you're like 50 now.
25:56
SPEAKER_02: I'm thirty how old am I?
25:57
SPEAKER_02: I'm 37.
25:59
SPEAKER_02: Think about that for a second.
26:00
SPEAKER_02: Really, me, me, meaning.
26:02
SPEAKER_02: Yeah, 37, soon to be 38.
26:04
SPEAKER_02: Um God, you don't look it.
26:07
SPEAKER_02: Good jeans.
26:08
SPEAKER_02: Good jeans.
26:08
SPEAKER_02: Good eyebrows.
26:10
SPEAKER_02: Oh, God bless tattoos.
26:12
SPEAKER_02: Um I don't know.
26:14
SPEAKER_02: Do you know what?
26:15
SPEAKER_02: The amount I've been through, when people sit and relate back to me of like what I've actually been through and near death and everything else, I'm like, why don't I have any grey hair?
26:24
SPEAKER_02: Yeah, yeah.
26:26
SPEAKER_02: Because most of the women in my my side of the family have all gone grey in their early 30s.
26:31
SPEAKER_00: Well, you I mean, with all the health things you've been through, surely you had to get something good.
26:34
SPEAKER_00: So if it means you don't have grey hair, then take it.
26:36
SPEAKER_02: They're all checking me.
26:37
SPEAKER_02: You still haven't got any greys.
26:38
SPEAKER_02: No.
26:38
SPEAKER_02: Have you been doing that?
26:39
SPEAKER_00: One stray one and I don't know why, but I feel like it's downhill from here.
26:43
SPEAKER_00: I mean, I'm only 33.
26:44
SPEAKER_00: I get grey eyebrows though, I just pluck those out.
26:46
SPEAKER_00: Yeah, yeah.
26:47
SPEAKER_00: Why?
26:47
SPEAKER_00: Like I've got one random white hair in my eyebrow right on the edge.
26:51
SPEAKER_00: And it's like, yeah, why?
26:53
SPEAKER_00: Like anyway.
26:56
SPEAKER_02: Joyce of uh being chronically look younger than what I'm meant to.
26:59
SPEAKER_00: Yeah, yay! Take the wins.
27:01
SPEAKER_02: Take the wins.
27:02
SPEAKER_02: Um the online community has changed so so much.
27:07
SPEAKER_02: I mean, back when I first started out, it was taboo to even do a bag change.
27:13
SPEAKER_02: You know, it was the big companies and the charities that were asking people to do bag changes for them and putting them out.
27:20
SPEAKER_02: Whereas now everybody does bag changes.
27:23
SPEAKER_02: It's it's crazy to see.
27:24
SPEAKER_02: Um I would be interested to actually see more Eurostomy do bag changes.
27:31
SPEAKER_00: Have you I've never actively searched for content on that.
27:34
SPEAKER_00: Have you?
27:35
SPEAKER_00: Is there much out there?
27:36
SPEAKER_00: There's some bits, um, but not an awful lot.
27:40
SPEAKER_01: Yeah.
27:41
SPEAKER_00: Yeah, isn't it funny?
27:42
SPEAKER_00: Like the di I mean, arguably it's both a way of removing waste from your body.
27:47
SPEAKER_00: Yeah, it does feel very different, doesn't it?
27:49
SPEAKER_02: Yeah, but at the same time, I think that the the statistical figures are it's only something like uh is it eleven thousand?
27:56
SPEAKER_02: Possibly like eleven thousand your ostomates in the UK.
28:00
SPEAKER_02: And I don't think that's per year, but I think as a as a collective.
28:03
SPEAKER_00: Wow.
28:04
SPEAKER_00: Where are they all?
28:05
SPEAKER_00: Isn't it mad?
28:06
SPEAKER_00: Like I sometimes when I'm walking through like somewhere with Jake and I think, I wonder how many people we've passed that have stomas that we'd have no idea do.
28:12
SPEAKER_00: Because people wouldn't probably think we have one when we're walking somewhere.
28:17
SPEAKER_02: I don't know, it's weird.
28:18
SPEAKER_02: I mean, I I was talking to you guys about this before obviously we were doing the podcast, and I I think not not to insult the British, but we're very we're very stayed, we're very everything should be hidden, everything should be kept quiet.
28:36
SPEAKER_02: Yeah, but we like to moan about bus queues, but we're not allowed to moan about live as a general whole, and it's it's just like the whole body image thing and the whole everything has to be perfect is such a narcissistic trend across the board for the younger generations of everything has to be perfect, there's no there's no room for you know having a scar or a mole, and whereas with us it's kind of embracing the damaged and embracing what a typical body shouldn't look like.
29:15
SPEAKER_00: But it doesn't come overnight, is it?
29:17
SPEAKER_00: Like we've both had previous relationships where well that's another podcast where let's just say the culture in our households did not promote body positivity, but I've you know obviously we're both in very different places and now we're able to be the way we are.
29:34
SPEAKER_02: I think me and Ben had only been together she's counting on her hands, by the way, people.
29:45
SPEAKER_02: Seven months before I had my stoma surgery.
29:47
SPEAKER_02: Wow.
29:49
SPEAKER_02: Um and he was absolutely fine with it, other than I did have to tell him to stay off of Google.
29:54
SPEAKER_02: What is it with Google?
29:55
SPEAKER_00: Oh stay off Google.
29:57
SPEAKER_00: But do you, but I so yeah, I dabbled in dating apps at the start of the year, and um, yeah, I mean, I typed in stoma bag just to see what people would find, and I was on there! I just I came up on the search, I thought, oh my god! Like, how is that?
30:14
SPEAKER_00: But you know, obviously, because we're both out there on Pelican and Respond and all that, and our you know, friends we've made, they're all on there as well.
30:22
SPEAKER_00: We all come up now, and it's it's it's a it's scary because it's you know, you're like, oh my, there's no there's nowhere to hide.
30:29
SPEAKER_02: It's why I use the pseudonym, and it is why my actual name is not attached to anything on my social media.
30:37
SPEAKER_02: Oh I've found a way to think she's clever.
30:41
SPEAKER_00: Are you gonna tell the people how you do that?
30:43
SPEAKER_02: No, you can't do that.
30:45
SPEAKER_02: Yes, I can.
30:48
SPEAKER_02: I get it all the time.
30:49
SPEAKER_00: We need to start a uh petition now to get you to, yeah.
30:52
SPEAKER_00: So we need the people to write in our comment and say you need to share your secret.
30:56
SPEAKER_02: No, I've done it so it it is it is completely detached from anything with that's related to my personal life.
31:03
SPEAKER_00: Well, I'm mine's gutsy.mem, and I'm pretty sure nothing to do with my personal life has anything to do with being gutsy.
31:09
SPEAKER_02: Yeah, but when I originally set up my accounts, it was linked to my Facebook.
31:13
SPEAKER_01: Oh yeah, don't do that.
31:14
SPEAKER_02: It was bringing that up.
31:15
SPEAKER_02: So I completely separate I I completely separated it all just because I get a lot of people that I haven't met.
31:21
SPEAKER_02: Oh, you won't add me on Facebook.
31:22
SPEAKER_00: I don't know you.
31:23
SPEAKER_00: Yeah, I mean, yeah, that's the thing.
31:25
SPEAKER_00: Like, and above all else, you've got to be safe.
31:27
SPEAKER_00: And I don't I don't have my you know my raising awareness account linked to anything personal.
31:35
SPEAKER_00: And I don't I might share stuff like of what I'm doing sometimes, but nine times out of ten, it's based on raising awareness, sharing what life is like with an ostomy.
31:46
SPEAKER_00: Um and I like to keep it that way.
31:48
SPEAKER_00: And you know what?
31:49
SPEAKER_00: If I've got something personal to share, then I'll share it on my Facebook, and that's for people who I genuinely like yourself, who I'm genuine friends with, who I've met in real life.
31:57
SPEAKER_02: Um yeah, but this this is the danger of on of an of being part of an online community, is some people think that they know you when they necessarily don't.
32:08
SPEAKER_02: And it it the way that I've done it is kind of keeping myself safe because I won't even mention the DMs.
32:15
SPEAKER_02: Oh, that's a whole nother episode.
32:17
SPEAKER_02: That's a whole nother episode.
32:19
SPEAKER_02: Um you know, I'm very lucky my husband doesn't judge anything.
32:24
SPEAKER_02: I've always shown him anything dodgy.
32:26
SPEAKER_02: It's insane.
32:27
SPEAKER_00: I mean, we've all had them when we get like get togethers and that with fellow ostomates.
32:31
SPEAKER_00: We have all had the dodgy DMs.
32:33
SPEAKER_02: I mean, yeah, it's I had one that was voice calling me on Messenger.
32:40
SPEAKER_02: Oh no.
32:41
SPEAKER_02: And I had to block them.
32:42
SPEAKER_02: So I blocked them and then they might create another program.
32:45
SPEAKER_02: Oh and found me again.
32:47
SPEAKER_02: So I completely unlinked everything after that.
32:50
SPEAKER_00: It's like, nope.
32:51
SPEAKER_00: Yeah, and then you think, oh my god, do I want to keep sharing?
32:54
SPEAKER_00: But you you I just think if anything like that happens, block and delete, and you just keep going for the people that you know you're making difference to.
33:01
SPEAKER_00: Because it yeah, it yeah, I've and people have to expect some of that behaviour, but as long as they know they can block and delete, they don't need to engage with it and move on.
33:13
SPEAKER_02: It's the I cannot believe how far social media and online has come, especially in the last was it 2023?
33:23
SPEAKER_02: Well, yeah, last eight years.
33:25
SPEAKER_00: Yeah.
33:26
SPEAKER_00: God, are we that old?
33:27
SPEAKER_02: Yeah, we are that old.
33:28
SPEAKER_02: Jesus, we are, yeah.
33:31
SPEAKER_02: I mean, how do you feel about obviously with what you do and when Jake's old enough to have a look at social media?
33:37
SPEAKER_02: What are your thoughts on that?
33:41
SPEAKER_00: Well, I so my content, I'm it's not um, I've got nothing on there that I'd be ashamed to show anyone.
33:50
SPEAKER_00: Like I'm very I think a lot like we both do.
33:54
SPEAKER_00: I think a lot about what I'm putting out there, how it impacts people.
33:57
SPEAKER_00: Um, and ultimately, yeah, by the time Jake gets to our age, who knows where social media will be.
34:03
SPEAKER_00: And you know, even a matter of a few years, he's gonna have access to it.
34:06
SPEAKER_00: And if he wanted to, he could look it up.
34:09
SPEAKER_00: Um, and you know, we've talked a lot about the sexualization of having a stoma bag and the way some people approach things, and that isn't me as a person, and I wouldn't go down that route, but also I have a child, they would go on it at some point, and I also wouldn't want them to see me in that way.
34:26
SPEAKER_00: So yeah, I'm very, you know, it's not like I'm thinking, oh my god, I can't do this because of Jake.
34:32
SPEAKER_00: But I yeah, it's it's you know, as a parent, you need to protect them as much as yourself.
34:37
SPEAKER_00: And I'm not, you know, I mean, let's face it, when he's a teenager, if any of his mates clicked on my profile and saw it, I'm pretty sure he wouldn't be jazzed.
34:45
SPEAKER_00: But you know, I'm proud of what I've put out there and I'd like to think he would be proud too.
34:51
SPEAKER_00: Um, yeah, and ultimately, the my main goal for then when I had surgery and put myself out there is to make sure that people in Jake's generation and younger are gonna have a better opinion of themselves in society and people are gonna have more understanding, and his the way he'll be able to navigate life if he still has his stoma when he's older, will be more stress-free than what we have, and that's that's the goal, that's why we do this.
35:17
SPEAKER_02: That's you know, it's it's like with me.
35:19
SPEAKER_02: So Maisie's 14 this year.
35:22
SPEAKER_02: I've been ill since the day I had her.
35:25
SPEAKER_02: And I'm quite glad she goes to secondary school now because I no longer have to go in for show and tell.
35:31
SPEAKER_02: Oh, we haven't done that with show and tell.
35:33
SPEAKER_02: It's not even funny.
35:34
SPEAKER_02: I don't want to be known as the woman with a stoma.
35:38
SPEAKER_02: They asked you to go in the house.
35:39
SPEAKER_02: Maisie writes things about when she was in primary school, she's written things about me and I've had to go in for her show and tell.
35:47
SPEAKER_02: And I'm like, I really do not want to be showing a bunch of year fours, my stoma bag.
35:50
SPEAKER_00: And she's like, but mummy, it's a stoma, and I'm like, It's incredible though, that she's that's that's her being proud of her, mum.
35:57
SPEAKER_00: That's amazing.
35:58
SPEAKER_02: Yeah, but I also don't want to get barred from the school playground for traumatising a bunch of year four children.
36:06
SPEAKER_02: Nine, eight, nine?
36:07
SPEAKER_02: Nine, nine, ten, nine, nine.
36:10
SPEAKER_02: Yeah, I don't I don't want to I don't want to be done for traumatising a bunch of nine-year-olds.
36:14
SPEAKER_02: No.
36:15
SPEAKER_00: But also, you know, that that's you know, isn't that sad that you're thinking that you showing your bag is traumatising?
36:22
SPEAKER_00: It shouldn't be.
36:22
SPEAKER_00: Yeah, but to change- I don't know why you think like that, but you know, that's again why we're doing stuff like this is because we want it to get to a point where it's not traumatising.
36:31
SPEAKER_02: I've always been of the notion, so Maisie growing up, I've always made sure that she's watched all the the the children's programmes that are all inclusive.
36:39
SPEAKER_02: Regardless of disability, autism, mental health.
36:42
SPEAKER_02: I've always made sure that anything that Maisie's done has always been inclusive.
36:46
SPEAKER_02: Okay, my disability or illness is included within that, so I've brought her up to have a better understanding and not to be judgmental and take something just just by looking at it.
36:58
SPEAKER_00: But that's the beauty of having an illness, isn't it?
37:00
SPEAKER_00: Is that you have that perspective that someone who maybe has gone through life with no more than a cough never will because they haven't had that first hand experience.
37:07
SPEAKER_02: No, so I've brought her up to be to to be inclusive and be understanding, but at the same time, I don't want to be the PowerPoint presentation of everything my daughter does through her school life.
37:19
SPEAKER_02: Now I'm just the taxi and oh god mum, really.
37:24
SPEAKER_00: Yeah, I'm not there yet.
37:25
SPEAKER_00: Jake's only seven, so yeah, I got a few years until that happens.
37:29
SPEAKER_00: But um, yeah, we've got we asked people on our social media platforms about if they had any questions they wanted to ask us.
37:36
SPEAKER_00: So, what were you asked?
37:38
SPEAKER_02: Um, so I was asked with regards to support being available at workplaces with regards to returning to work after surgery.
37:48
SPEAKER_02: Now, every workplace is different, every HR procedure is different.
37:55
SPEAKER_02: So it's a case of talking to your HR and asking because in terms of my return to work, my boss is my husband.
38:05
SPEAKER_02: So goals, you have no problem then.
38:09
SPEAKER_02: Um, you know, in terms of returning to work, if I wanted to work from home to infinity and beyond, I'd be allowed to do so because it means that I work from home.
38:17
SPEAKER_02: Um but it would be different for one of the other lads in the office who does coding and needs to be in.
38:24
SPEAKER_02: So it's I mean, I know from when I used to work with the bank, um, it was things like staged return to work, so an increase of hours as as the weeks went through.
38:36
SPEAKER_00: Which is fine, but what if your recovery isn't linear?
38:40
SPEAKER_02: Not everybody's recovery is linear, but at the same time, we're very lucky in the UK that we get paid sick pay for the majority of the time.
38:49
SPEAKER_02: If not, then we can claim for statutory sick pay via a sick note from the doctors, and you can claim statutory sick pay via the benefits office until getting back into work.
38:59
SPEAKER_02: And it's just about managing your own expectations.
39:03
SPEAKER_02: At the end of the day, if you're having protectomy surgery and you're having open protectomy surgery, it's going to be at least three months, four months at a push before you're back to work because I would my surgeon said to me when I had that surgery, it would take a year for me to feel human, and I thought he was joking.
39:19
SPEAKER_02: He definitely wasn't.
39:21
SPEAKER_00: Really, that long.
39:22
SPEAKER_02: It it took me a I I was back to work within four months.
39:26
SPEAKER_02: I was back doing bits and pieces, but it it took a year before I stopped feeling completely wiped out after doing God, that's such a long time, isn't it?
39:35
SPEAKER_02: Yeah, but then I also have Crohn's disease and some other added autoimmune issues.
39:41
SPEAKER_00: Oh god.
39:42
SPEAKER_00: Well, what um so someone asked me um about advice for swimming with a stoma, so I I I think the most important thing is to make sure you've got the right bag for you to start off with.
39:54
SPEAKER_00: Yeah.
39:54
SPEAKER_00: If you've got any issues with your bag, if it's prone to leaking or it's not um adhering to the skin properly, then as soon as you go in that sea, it's probably gonna come off or start coming off.
40:04
SPEAKER_00: Um I mean, support where even if it's not technically used for swimming, I used that to start off with Endra's swimming costume just so I felt more secure.
40:13
SPEAKER_00: So if the bag did come off, then I had like that extra layer to contain it until I could get um out and I could change it.
40:22
SPEAKER_00: I had that funny belt.
40:22
SPEAKER_02: You know the belt that you get with if you've if you're convex, the belt that goes through the loops on the back of the base page.
40:28
SPEAKER_02: Yes, yeah.
40:29
SPEAKER_02: Yeah, I used I used to use that when I first started going swimming.
40:32
SPEAKER_00: Yeah, it's um there's lots of stuff out there and support wear and stuff you could use.
40:36
SPEAKER_00: And also swimming costumes that I mean if you go into like the shops at the moment, there's loads of swimwear out there in there, because it's that time of year.
40:43
SPEAKER_00: I don't tend to go for generic swimming costumes because they just I just don't feel supported enough in them.
40:48
SPEAKER_00: So you don't wear swimming costumes.
40:50
SPEAKER_00: No, well, I'm not a fan either.
40:53
SPEAKER_00: Um so yeah, I'll always go for something with like a double layer of support or the tummy support ones that cost you like£10 more.
41:02
SPEAKER_00: But um, yeah, anything you can wear to make you feel more secure, making sure you've got the right bag.
41:07
SPEAKER_00: And also what I would do with me and Jake when we go to the beach is I will have um some kind of like oh gosh, what's it called?
41:14
SPEAKER_00: Like some kind of setup so that if one of our bags does go, we can discreetly change our bag on the beach.
41:21
SPEAKER_00: So yeah, just having everything in like plan A, plan B, plan C, making sure that I'm near toilets, making sure that you know I've got bags cut, everything in place if the worst happens.
41:33
SPEAKER_00: Um but yeah, swimming, you know, is something to enjoy and something you should 100% still be able to do with a swimmer.
41:39
SPEAKER_02: I went to Greece last year and swimming in the sea didn't have an issue.
41:42
SPEAKER_02: I was only changed my bag once a day.
41:44
SPEAKER_02: Lush.
41:44
SPEAKER_02: Always used to change it over night time.
41:46
SPEAKER_02: Yeah not in the morning, overnight time.
41:49
SPEAKER_00: When I find as well, swimming is so freeing.
41:52
SPEAKER_00: Like I don't think I don't even think of my bag when I'm swimming.
41:56
SPEAKER_00: I think it's lush.
41:56
SPEAKER_02: I think the best advice is always take spares with you if you don't if you don't have faith in your bag.
42:02
SPEAKER_01: Yeah.
42:02
SPEAKER_02: Always take something with you to change into or to have a spare bag change with you.
42:07
SPEAKER_02: Yeah.
42:07
SPEAKER_02: But like you say, your bag shouldn't be coming off the minute you hit water.
42:10
SPEAKER_02: If it's coming off, then it's not the right thing.
42:12
SPEAKER_02: It's not for you.
42:13
SPEAKER_00: Um yeah, another question I got asked was about going to the gym.
42:16
SPEAKER_00: So there's a lot of us that post content about keeping fit and being active and going to the gym.
42:22
SPEAKER_00: And again, it's quite a similar subject, really.
42:24
SPEAKER_00: So good support, wear, bringing spares, only doing what you're comfortable with, and more importantly than that, just making sure that you take the time to recover properly and take your stoner nurse's advice.
42:35
SPEAKER_00: Don't go running before you can walk.
42:37
SPEAKER_00: Um, let your body ease back into exercise.
42:40
SPEAKER_00: Don't just go full guns blazing because the last thing you want to do is have to go back ten steps when you've gone forward one.
42:47
SPEAKER_00: Support wear as well.
42:49
SPEAKER_00: What about you?
42:50
SPEAKER_00: What were you uh asked as well?
42:52
SPEAKER_02: Um, I mean, when I was allowed to go to the gym, I was absolutely fine, but I always stuck to cardio and lightweight, so never did anything that was going to cause me hernia.
43:01
SPEAKER_00: Yeah, yeah.
43:01
SPEAKER_00: And I think a hernia is such a scary concept.
43:05
SPEAKER_00: I, you know, it took me about a year of doing more high intensity and more weighted exercise because I was petrified about getting a hernia because I'd seen pictures, heard stories, and it scared the life out of me.
43:17
SPEAKER_02: It shouldn't be scared.
43:18
SPEAKER_02: At the end of the day, you're either predisposed to them or you're not.
43:21
SPEAKER_01: Yeah.
43:21
SPEAKER_02: There's there's no am I or aren't I?
43:24
SPEAKER_02: It's a you either will or you won't.
43:25
SPEAKER_00: There's Yeah.
43:27
SPEAKER_02: There's no actual statistics.
43:28
SPEAKER_00: I mean, touch wood, I have not had one.
43:31
SPEAKER_00: Um but yeah, it's I've had four repairs.
43:35
SPEAKER_00: You've had four, of course you have.
43:38
SPEAKER_02: It's because of the it's because of the mesh.
43:40
SPEAKER_02: When the mesh starts breaking down, it pops through.
43:42
SPEAKER_00: Oh my gosh.
43:44
SPEAKER_00: But again, you with hernia booklets and that you're given, it's always old people on them.
43:51
SPEAKER_00: You don't think of young people as getting them, but they do.
43:53
SPEAKER_00: It doesn't, you know, it's like you said, whether you're gonna get it or not.
43:58
SPEAKER_00: But um I mean the
44:00
SPEAKER_02: One that I got asked are what are your tips for getting used to our new bodies post-op?
44:06
SPEAKER_02: Oh yeah.
44:06
SPEAKER_02: Oh god, yeah.
44:08
SPEAKER_02: Well, that's another episode, isn't it?
44:12
SPEAKER_02: I think using social media as a tool helps.
44:15
SPEAKER_02: It's just about finding those that uh look similar to you because obviously some have had keyhole surgery, don't have scars, some obviously laparotomies.
44:24
SPEAKER_00: And if you're looking at content that makes you feel anything other than positive and good, just don't follow it anymore.
44:30
SPEAKER_00: Just remove it from your feed because you don't need that.
44:33
SPEAKER_00: Unlike.
44:34
SPEAKER_00: And surround yourself with beautiful people like yourself.
44:37
SPEAKER_00: Like, you know, connect like on the weekend.
44:39
SPEAKER_00: So I went to see our fellow ambassador Philippa, and I had the best weekend just being with her never ostomate.
44:46
SPEAKER_00: And you know what?
44:46
SPEAKER_00: I didn't even think about my bag the whole time I was with her for those two days.
44:51
SPEAKER_00: What?
44:51
SPEAKER_00: And an epic hangover.
44:53
SPEAKER_00: Well, yeah, the two-day hangover wasn't the one.
44:55
SPEAKER_00: But um, yeah, no, it's just like the people that I've met through doing this, I never would have met.
45:01
SPEAKER_00: Like, we're spread out across the country so far and wide.
45:04
SPEAKER_00: Yeah.
45:05
SPEAKER_00: I mean, yeah, you drove ages to get here.
45:08
SPEAKER_00: Um, but yeah, it's I love it.
45:10
SPEAKER_00: I just think it's so important to connect with people that like it doesn't matter how supportive your friends and family are.
45:16
SPEAKER_00: And I'm lucky I've got a really supportive network of people around me, but it's not it's this never quite if they don't have a stoma they don't understand, I think would be the correct yeah, and that's not to insult family and friends.
45:28
SPEAKER_00: Not at all.
45:29
SPEAKER_00: You're right.
45:29
SPEAKER_00: It's yeah, it I mean, it's just being in a room full of people that have been in your shoes and there is no feeling like it.
45:37
SPEAKER_02: It's it's just about becoming confident and getting used to your new way of life with your new body.
45:43
SPEAKER_02: It's you know, I'm lucky my husband still finds me attractive, but I'm pretty sure if anything ever happened between me and Ben, I'll probably have a hard push time to No, not at all.
45:53
SPEAKER_00: I mean I don't think I could I don't think I could do it again.
45:56
SPEAKER_00: It's just don't say that.
45:58
SPEAKER_00: Well, I so I, you know, I've come out of a nine-year marriage, and yeah, it's at my age I was not expecting that.
46:05
SPEAKER_00: And uh they did not find me attractive anymore when I had my bag, and at the time it was devastating and a hard pill to swallow.
46:13
SPEAKER_00: But ultimately, you shouldn't be with someone who doesn't accept you for what you are, and it's more of a show of their character, it's not a negative on you as a person, and I, you know, I am sure my night in shining armor is out there.
46:31
SPEAKER_02: You will find.
46:32
SPEAKER_00: You will find the knight in shining armor, but they're not on dating apps because that is just they are terrible.
46:38
SPEAKER_02: No, it's just really good for entertainment if you're bored on a Friday night.
46:42
SPEAKER_00: Oh, no, no, yeah, no, no.
46:44
SPEAKER_00: They are they are not the one, but that's a whole nother episode.
46:46
SPEAKER_00: Um, but yeah, so wow, I think we've covered a lot for our first episode.
46:51
SPEAKER_00: I mean, it's gone so quick.
46:52
SPEAKER_00: I can't believe we've finally done the first one.
46:54
SPEAKER_00: It's mad.
46:55
SPEAKER_00: So there's no more for us to say than thank the good people for listening um to our first episode of Beyond the Pouch.
47:02
SPEAKER_00: Um, we hope you've enjoyed listening and we hope you've taken something away from this.
47:07
SPEAKER_00: And if you have anything you wanna have covered or anything you want to ask us, then we'll have our socials linked.
47:14
SPEAKER_00: And the only thing I've got left to say is uh thank you, co-host.
47:17
SPEAKER_00: It's been delightful.
47:18
SPEAKER_02: Thank you, Rach.
47:19
SPEAKER_02: Love you!
47:20
SPEAKER_00: And we'll see you all next time.