Latest / Beyond the Pouch / EP16: Angelina's Crohn's Journey & Pregnancy with a Stoma

Transcript

EP16: Angelina's Crohn's Journey & Pregnancy with a Stoma · Beyond the Pouch

• 0:00
  SPEAKER_00: You've had quite the journey.
• 0:02
  SPEAKER_00: So at twelve years old, um I started feeling a bit unwell, in constant chronic pain.
• 0:07
  SPEAKER_00: And I mean the pain would was debilitating.
• 0:10
  SPEAKER_00: And they confirmed it was Crohn's disease.
• 0:13
  SPEAKER_00: Um and I remember my nurse saying to me, if you hadn't come in that night, you would have not made it through the night.
• 0:18
  SPEAKER_00: And that literally put fear into me.
• 0:21
  SPEAKER_00: I remember looking down and I was like, what have I done?
• 0:24
  SPEAKER_00: Having an operation is such a big deal.
• 0:27
  SPEAKER_00: And I always preach this.
• 0:28
  SPEAKER_00: But I was just thinking, just be kind to yourself, just take it easy, and um, yeah, just be really kind to yourself.
• 0:37
  SPEAKER_01: So, welcome back to Be on the Pouch.
• 0:39
  SPEAKER_01: If you haven't already listened to our previous episodes, head over to Spotify or YouTube and don't forget to subscribe so you'll never miss an update.
• 0:48
  SPEAKER_01: We're excited to have a very special guest today, Angelina.
• 0:52
  SPEAKER_01: She will be sharing her powerful journey of living with a stoma, embracing self-love and her experience with pregnancy and motherhood.
• 1:01
  SPEAKER_01: Oh, amazing.
• 1:02
  SPEAKER_02: Thank you so much for having me.
• 1:04
  SPEAKER_02: I love this.
• 1:05
  SPEAKER_02: I feel like this is like putting on my comfies at the end of the day because you're an you're an old friend and a goodie.
• 1:11
  SPEAKER_02: This is less.
• 1:13
  SPEAKER_01: I feel like I haven't seen you for ages because I think I've been a bit busy.
• 1:18
  SPEAKER_01: I've been very busy.
• 1:19
  SPEAKER_01: I first met you down in Swansea years ago.
• 1:22
  SPEAKER_01: Yeah when we were at Swansea Stadium with Keith.
• 1:25
  SPEAKER_00: What was I doing there?
• 1:26
  SPEAKER_00: Was I with Pelican?
• 1:27
  SPEAKER_00: I believe I believe I was.
• 1:29
  SPEAKER_00: Um and I remember meeting you and Keith.
• 1:33
  SPEAKER_00: And yeah, I remember you did a really lovely speech there as well.
• 1:37
  SPEAKER_00: Um but yeah, that it's been a while.
• 1:40
  SPEAKER_00: How long when was when did you first start doing stuff with social media and that?
• 1:45
  SPEAKER_00: I think that Swansea thing was probably around the first time because I was just starting up Aura clothing.
• 1:51
  SPEAKER_00: Um so I was like going here trying to go to like stoma events and kind of like get to know people and kind of suss out the OSMI world.
• 2:02
  SPEAKER_00: Um and then yeah, and then that's where we all started, I guess.
• 2:07
  SPEAKER_00: And then when I decided to start Aura, I think that's when my social media and my um raising awareness kind of c came into place naturally, which was quite nice.
• 2:18
  SPEAKER_02: So, I mean you've got a stoma, I guess.
• 2:21
  SPEAKER_02: Yes.
• 2:21
  SPEAKER_02: Because of Crohn's.
• 2:23
  SPEAKER_02: Yes.
• 2:23
  SPEAKER_02: You've had quite the journey.
• 2:25
  SPEAKER_02: It started quite early on in childhood for you, didn't it?
• 2:28
  SPEAKER_02: So would you like to share how it all worked?
• 2:31
  SPEAKER_00: Yeah, um so at twelve years old, um, I started feeling a bit unwell.
• 2:36
  SPEAKER_00: My symptoms were um lack of appetite, being sick, in constant chronic pain.
• 2:42
  SPEAKER_00: And I mean the pain would was debilitating.
• 2:45
  SPEAKER_00: It was so bad.
• 2:46
  SPEAKER_00: Um I was l um losing a lot of blood in my stool.
• 2:50
  SPEAKER_00: Um, I couldn't really like wait for the toilet.
• 2:52
  SPEAKER_00: I had to go.
• 2:53
  SPEAKER_00: I was going multiple times a day.
• 2:55
  SPEAKER_00: And I kept going to the GP and all they kept saying to me was, This seems like a bug.
• 3:00
  SPEAKER_00: Give it a few more days and you'll be fine.
• 3:02
  SPEAKER_00: And I kept going back and forth, back and forth, back and forth, absolutely no help whatsoever, um, to the point where I'd lost loads of weight because I wasn't eating.
• 3:12
  SPEAKER_00: Yeah.
• 3:12
  SPEAKER_00: Um, and obviously I was losing a lot of fluids as well.
• 3:15
  SPEAKER_00: And I remember I was brushing my teeth and I collapsed and hit my head on the radiator, and my mum came in with like foam all over my mouth.
• 3:22
  SPEAKER_00: She was like, Oh my god, my daughter's gonna raise no.
• 3:30
  SPEAKER_00: Um and then I got rushed to AE, um, and that's when they said they think I might have um IBD.
• 3:37
  SPEAKER_00: Um, and then I was transferred to um Cardiff Hospital, um, where I was under a specialist um consultant, and um we did some like um tests, so I had the um colonoscopy and they confirmed it was Crohn's disease.
• 3:55
  SPEAKER_00: Um and at the time I was only 12 and I'd spent a good couple of months in hospital already.
• 4:01
  SPEAKER_00: Um and I remember when I heard the words Crohn's disease, I just thought it's like something that you'd have, but then have medicine and then get better.
• 4:09
  SPEAKER_00: I think it took me about a year to realise that it's like ongoing and I've got it for life.
• 4:15
  SPEAKER_00: No one really explained that to me.
• 4:17
  SPEAKER_00: And I was a bit like, okay.
• 4:20
  SPEAKER_00: Um so yeah, so I was diagnosed with Crohn's disease um and I was in and out of hospital for about a year.
• 4:26
  SPEAKER_00: Um I've tried infusions, I've tried injections, I've tried diet, I've tried um I had um the NG tube where I was like didn't eat anything for six weeks to see if it would help.
• 4:39
  SPEAKER_00: I was on steroids, um, I was on so many different things, and nothing seemed to help.
• 4:46
  SPEAKER_00: Um, to the point where I remember they let me go home um for a few days, and it was like a summer a summer day and it was really hot outside.
• 4:55
  SPEAKER_00: But I was sat in the house with like my dressing gown on, a blanket, a portable heater right next to me, and I was just shivering because I was like so cold and so like didn't have any energy.
• 5:07
  SPEAKER_00: Um like have you seen that vine?
• 5:10
  SPEAKER_00: Was like, I've got nothing left.
• 5:12
  SPEAKER_00: That's literally what I was like.
• 5:14
  SPEAKER_00: I had nothing left in me.
• 5:16
  SPEAKER_00: Um and yeah, so went back into hospital and they said to me, Um, looks like we're gonna have to have surgery.
• 5:25
  SPEAKER_00: Um so I was like, Yeah, okay.
• 5:27
  SPEAKER_00: Um and I remember my nurse um who I was really close to had said to me, uh they put so sorry, they put me straight on like TPN um and like pumped me with loads of different drugs basically.
• 5:39
  SPEAKER_00: Um and I remember my nurse saying to me, if you hadn't come in that night, you would have not made it through the night.
• 5:45
  SPEAKER_00: And that literally put fear into me, and I was like, I need to do whatever I need to do to just like get over this and get better.
• 5:53
  SPEAKER_00: What an age to experience that.
• 5:54
  SPEAKER_00: Oh yeah, but a thing is like I was thinking about this in the car on the way here.
• 5:58
  SPEAKER_00: Um at the time, you just get on with it.
• 6:02
  SPEAKER_00: You don't have time to sit and process what's going on, and when you're so young as well, you the world just like moves past you and you're just like a bit what's the word?
• 6:12
  SPEAKER_00: Like kind of you don't really think about things in the way that an adult would.
• 6:16
  SPEAKER_00: Um so I was just very like in the moment and all I wanted to do was to get better so I could go back to school and see my friends.
• 6:24
  SPEAKER_00: That's all I was thinking about.
• 6:26
  SPEAKER_00: I just wanted a normal childhood.
• 6:27
  SPEAKER_00: And you was a baby.
• 6:29
  SPEAKER_00: Yeah, I think you was diagnosed the year I had Maisie.
• 6:32
  SPEAKER_00: Yeah.
• 6:33
  SPEAKER_00: It's just I know, but again, you just you don't really think about it, you don't really like process it.
• 6:41
  SPEAKER_00: And I think going through something as traumatic as that, you just like grow up.
• 6:47
  SPEAKER_00: You don't have time to be a child anymore, you don't have time to like, you know, think about anything else.
• 6:52
  SPEAKER_00: You just have to like fight, I guess, and just get on with it.
• 6:58
  SPEAKER_00: Um so that's pretty much what I did.
• 7:01
  SPEAKER_00: Um, and I remember they said to me, Gotta have an eleostomy, and they came by with like a laptop with a video on it, and this video um showed people of all ages, um, young and old, with a stoma and how they're just living their life with it.
• 7:20
  SPEAKER_00: Um so it was very like happy and upbeat video, like, look at me, I've got a stoma, I can do this, I can go swimming, I can go on a date night, I can and it kind of like made me feel like, oh, like this is amazing.
• 7:32
  SPEAKER_00: This is I'll have this.
• 7:33
  SPEAKER_00: And they said it was temporary, I'll have this for a few years, I'll get better, I'll have more surgery, and then I'll be back to normal.
• 7:38
  SPEAKER_00: So I was like, Yeah, yeah, I'm gonna have the surgery.
• 7:41
  SPEAKER_00: My parents were a bit apprehensive.
• 7:42
  SPEAKER_00: They were like, Are you sure, Ange?
• 7:43
  SPEAKER_00: Like, you know, it's such a big thing.
• 7:45
  SPEAKER_00: But I was like, There's nothing else that I can do, it's bag or box.
• 7:49
  SPEAKER_00: Um so I remember just like saying to my parents, it's really what I want now.
• 7:55
  SPEAKER_00: And they were like supportive, obviously.
• 7:57
  SPEAKER_00: Um, because I think it was hard on them.
• 8:00
  SPEAKER_00: Um and then yeah, I had my surgery, and it all went well, um, no issues.
• 8:10
  SPEAKER_00: Just woke up feeling a bit like, what have I done?
• 8:13
  SPEAKER_02: God, can you remember seeing it for the first time?
• 8:16
  SPEAKER_00: That memory in my head is so clear.
• 8:19
  SPEAKER_00: I remember waking up, I was in my own room, my mum and brother and sister were there.
• 8:24
  SPEAKER_00: Um, and no, I wasn't in my own room, I was in um ICU.
• 8:29
  SPEAKER_00: So I was with a few different people, but I remember just like waking up, and my mum and brother or sister were there, they all kissed me, and like I remember just feeling like, oh my god, I got through it.
• 8:38
  SPEAKER_00: Um and I didn't I didn't look down, I was just kind of like lying down, and then they were like, You're going to Disneyland, you know, the hospital's taking you to Florida, and I was like, Oh my god, oh my god, this is amazing.
• 8:50
  SPEAKER_00: So Dreamfly actually took me to Florida um soon after my operation.
• 8:54
  SPEAKER_00: So that that chewed me up.
• 8:56
  SPEAKER_00: Um but I remember I got taken into like an ICU um ward, but in my own little room, and that's when I fully like woke up.
• 9:05
  SPEAKER_00: And I remember looking down and they put that clear bag on you.
• 9:09
  SPEAKER_00: Yeah, yeah.
• 9:09
  SPEAKER_00: And I was just like, and it was so swollen and so big, and I was like, what have I done?
• 9:15
  SPEAKER_00: Like, how how am I gonna do anything with this?
• 9:20
  SPEAKER_01: Um That is a core memory though, isn't it?
• 9:23
  SPEAKER_00: Because it doesn't matter how many surgeries you have, that shock of waking up, especially when it whether it's been moved or refashioned, is just what is going on and yeah, especially seeing it for the first time, like as you guys know, it's it's not a pretty sight, unfortunately.
• 9:41
  SPEAKER_00: Um but yeah, I remember seeing that and just being really emotional, but again, I didn't really have time to be emotional because the nurses came straight in and I had to get myself up and I had to try and use the loo and I had to like wash myself and get changed and then my mum would come and then you know, you don't really have time to process things like that.
• 10:00
  SPEAKER_00: I think in hindsight, I probably would have liked an hour to myself just to like come to terms with it.
• 10:07
  SPEAKER_00: Yeah.
• 10:07
  SPEAKER_00: Because even after it, I think for months I was like quiet and like held back and because I was still thinking to myself, every time I looked down or every time it made a noise, I was like, oh my god, like how am I ever gonna have a normal life?
• 10:23
  SPEAKER_00: But you do.
• 10:24
  SPEAKER_00: Yeah.
• 10:25
  SPEAKER_00: You just do, I think, with everything in life, you just get on with it.
• 10:29
  SPEAKER_02: How did you I mean what how soon after that then was there talk about how you would become more independent in terms of managing the bag yourself?
• 10:40
  SPEAKER_02: Because I mean you wouldn't have changed it y yourself straight away.
• 10:43
  SPEAKER_00: No, um they tried to like teach me in hospital, but it literally just went in one ear, came out the other, because I think with so much to process, it's really hard to like think about how you're gonna manage it, especially because I didn't even want to touch it.
• 10:58
  SPEAKER_00: I didn't even want to like because it was so sore, um, and I just didn't want to like kind of come to terms with it just yet.
• 11:06
  SPEAKER_00: I think I needed like my own space.
• 11:08
  SPEAKER_00: Um, but I remember going back home, I believe it was like a week or two after the surgery, so quite soon after.
• 11:16
  SPEAKER_00: Um, but I remember going home and a uh nurse came out to see me in the house and she was teaching me how to do it.
• 11:25
  SPEAKER_00: But I was really confused.
• 11:26
  SPEAKER_00: So she came the one day.
• 11:28
  SPEAKER_00: I sort of I can't believe I remember all of this, but um, she came in the one day, showed me how to do it, and I thought she'd come in the day after, maybe the day after, maybe two or three times to kind of help me a bit more.
• 11:39
  SPEAKER_00: No.
• 11:40
  unknown: No.
• 11:40
  SPEAKER_00: Just the one day showed me how it was done, and then I was literally left on my own.
• 11:46
  SPEAKER_00: Um, thankfully my mum helped for a lot of it, because I think like my mum had seen and was kind of like trying to help me and boost my confidence a little bit and just to like kind of get me into the rhythm of doing it on my own.
• 11:59
  SPEAKER_00: Um and eventually you just do it and you have to, because otherwise, obviously.
• 12:04
  SPEAKER_01: Do you think that may have been obviously because of your age at the time you were thirteen?
• 12:09
  SPEAKER_01: So maybe the stomach saw that with you being a teenager and a bit more able to do it.
• 12:15
  SPEAKER_00: Yeah.
• 12:17
  SPEAKER_00: I know, but I think one day for anyone that's had that surgery, no matter what age you are, is not enough.
• 12:24
  SPEAKER_00: I think there needs to be more help.
• 12:28
  SPEAKER_01: You you only basically get the once, maybe twice at the push with the stoma nurse in hospital and y you sent because they won't discharge you unless you know how to change it.
• 12:38
  SPEAKER_02: So were your parents, because I know from my perspective with the kids having their stoma surgery, um myself and their dad would were shown, and then it wasn't until they were 100% certain we were competent that we could go home with them because they knew we could manage that.
• 12:54
  SPEAKER_02: So is that what was done with your parents?
• 12:57
  SPEAKER_00: Um, not really.
• 12:59
  SPEAKER_00: I think um so my dad worked away, so it's just my mum, my brother and my sister.
• 13:04
  SPEAKER_00: Um but my my mum was like obviously there in the room, but they were showing me, not her.
• 13:10
  SPEAKER_02: Oh right.
• 13:11
  SPEAKER_02: So it was all on me.
• 13:12
  SPEAKER_00: So it was all on me.
• 13:13
  SPEAKER_00: Um so I think my mum like was obviously looking and learning herself without actually doing it.
• 13:20
  SPEAKER_00: Because I think I don't know how you do it with your little ones, but it might like your little one having a stoma and having to change them, like it must be so hard when it's like the first thing you have to you know.
• 13:30
  SPEAKER_02: And I suppose as a parent, you're coming to terms with seeing what's happened to your child as much as you that must have been a well got horrendous for you, but your mum must have been trying to process that a lot.
• 13:43
  SPEAKER_02: And with your dad away, that must have been really tough for her.
• 13:45
  SPEAKER_00: Yeah, I think it was really tough for her.
• 13:47
  SPEAKER_00: Um but I did stay strong.
• 13:50
  SPEAKER_00: I remember she told me a story once.
• 13:51
  SPEAKER_00: I'm probably gonna get emotional saying this, but it was just before I went into surgery, and my mum's a panicker.
• 13:59
  SPEAKER_00: She is not calm, cool, and collected.
• 14:01
  SPEAKER_00: She was panicking.
• 14:02
  SPEAKER_00: She was like, you know, she knew everything was gonna go okay because my doctors were honestly amazing and my surgeons were amazing.
• 14:08
  SPEAKER_00: Um, but she was just obviously panicking and a bit like worried of what might happen.
• 14:16
  SPEAKER_00: Um and I I could see her in her face, even though she was trying to be strong, and I was like trying to cheer up, I was laughing and giggling all the way down to the like the um the theatre room where they like put injections in and stuff.
• 14:28
  SPEAKER_00: Um and I remember she said to me, I was like laughing and like all happy.
• 14:34
  SPEAKER_00: As soon as they like um put the anesthetic in and I like closed my eyes, a tear rolled down.
• 14:40
  SPEAKER_00: I think I was trying so hard to like keep it back um for her that yeah emotionally.
• 14:50
  SPEAKER_00: But she she always talks about that, you know, just to say like how strong I was.
• 14:55
  SPEAKER_00: Um and I did try to put on a brave face, but yeah.
• 14:59
  SPEAKER_00: But yeah, back to um the bag change thing.
• 15:02
  SPEAKER_00: I don't feel like I feel like I was just left to my own devices a little bit.
• 15:07
  SPEAKER_00: And also like stomachy, did you guys ever have like a choice of what you wanted to wear?
• 15:13
  SPEAKER_00: Not back then, no.
• 15:14
  SPEAKER_00: I was just given whatever the nurse like represented.
• 15:18
  SPEAKER_00: I thought that was the only bag on the market, the one I had.
• 15:21
  SPEAKER_00: I literally thought there was no other bag, this is what I've got.
• 15:25
  SPEAKER_00: And you know, back in the day they weren't as nice as they are now.
• 15:29
  SPEAKER_02: No, no, it things have changed so much, haven't they?
• 15:32
  SPEAKER_00: Yeah, definitely.
• 15:44
  SPEAKER_00: And then they went into like that nude, but you could still see everything.
• 15:48
  SPEAKER_00: And then they eventually got better.
• 15:50
  SPEAKER_00: Yeah.
• 15:51
  SPEAKER_02: And then you so at age 18 then you underwent permanent surgery with the Barbie bet.
• 15:57
  SPEAKER_00: Yeah.
• 15:57
  SPEAKER_02: So still at at that age a massive surgery.
• 16:03
  SPEAKER_01: That one's not too bad.
• 16:04
  SPEAKER_01: Was there any logical reasoning behind that?
• 16:06
  SPEAKER_01: Did you just decide not to have a reversal or was so material?
• 16:11
  SPEAKER_00: So they told me, like when I had my first surgery, that I would have a reversal, I'd have this bag for maybe one or two years and then have a reversal.
• 16:19
  SPEAKER_00: Um but my rectum was just so inflamed, still had Crohn's disease in it, and it just wasn't getting any better.
• 16:27
  SPEAKER_00: Um I was on Adelinamab at the time as well to try and like calm things down, but nothing was calm it down.
• 16:34
  SPEAKER_00: I was still in pain.
• 16:35
  SPEAKER_01: Your mirror.
• 16:36
  SPEAKER_00: Yeah.
• 16:36
  SPEAKER_00: Um, I was still um losing a lot of blood.
• 16:41
  SPEAKER_00: Um, I just wasn't well.
• 16:43
  SPEAKER_00: Um and I just thought to myself, I just need this bit gone.
• 16:47
  SPEAKER_00: Like, I just I I just want to be happy and healthy.
• 16:51
  SPEAKER_00: And it's probably the best decision I've ever made.
• 16:53
  SPEAKER_00: So the medication didn't help at all.
• 16:54
  SPEAKER_00: No, no.
• 16:55
  SPEAKER_01: So they would have dis possibly deemed it as refractor r refactory Crohn's disease at the time.
• 17:01
  SPEAKER_01: Yeah.
• 17:01
  SPEAKER_01: In in other words, stubborn medication won't work, surgical is the only management option.
• 17:07
  SPEAKER_00: Pretty much, yeah.
• 17:08
  SPEAKER_00: But um it was my decision to to do it.
• 17:10
  SPEAKER_00: I'm the one that spoke to my surgeon and just said to him, please can I have this?
• 17:15
  SPEAKER_00: I I just I can't live like this anymore.
• 17:17
  SPEAKER_00: I just want to go to school, I want to go out with my friends and not have to worry about leaks and all sorts.
• 17:23
  SPEAKER_00: Um and he was like, Yeah, sure.
• 17:26
  SPEAKER_00: So I had the surgery at 18.
• 17:28
  SPEAKER_02: Um Was that with your care setting in pediatrics or had you switched to adult then?
• 17:35
  SPEAKER_00: I was a mixture of both, to be honest.
• 17:37
  SPEAKER_00: So I'm dreading that.
• 17:39
  SPEAKER_00: I was um I was under pediatric, but I woke up in an adult ward.
• 17:44
  SPEAKER_00: And I remember thinking, this is not fun.
• 17:47
  SPEAKER_02: It's so different, isn't it?
• 17:48
  SPEAKER_02: I mean pediatric environment in a hospital, you know, if the fending's there, it's a lot less depressing.
• 17:55
  SPEAKER_00: Yeah.
• 17:56
  SPEAKER_00: Yeah.
• 17:56
  SPEAKER_02: Than in the adult side.
• 17:58
  SPEAKER_00: Yeah.
• 17:58
  SPEAKER_00: I mean, thankfully for all my stays in hospital, but that one, I was in like the pediatric and then take you to Disney then after the Barbie Barton?
• 18:10
  SPEAKER_01: They didn't take you to Disney after Barbie button.
• 18:13
  SPEAKER_00: I was really hoping for really hoping for another trip.
• 18:17
  SPEAKER_02: I mean you've accomplished so much since then.
• 18:20
  SPEAKER_02: Yeah and we have to talk about aura clothing, which I, you know, I lucky enough to have ha made a few purchases with the case.
• 18:29
  SPEAKER_02: Um I mean, what was the drive for that and how did it all start?
• 18:34
  SPEAKER_00: So I think it was well, I know, it was just like feeling self-conscious in my own skin um and not finding the right clothes to kind of help hide my stoma.
• 18:46
  SPEAKER_00: It was things like events with friends or like um going to the beach or going on holidays.
• 18:54
  SPEAKER_00: I just couldn't find things that kind of helped make my stoma more discreet, but was also like comfortable and fashionable.
• 19:04
  SPEAKER_00: Um so I did a lot of research and I did like um look into different things.
• 19:10
  SPEAKER_00: Um and yeah, I've just basically decided one day, you know what, I'm gonna do this because what have I got to lose?
• 19:18
  SPEAKER_00: And um took me a few years.
• 19:20
  SPEAKER_00: Um YouTube was my best friend.
• 19:22
  SPEAKER_00: I learned learned how to start a business on you on YouTube.
• 19:26
  SPEAKER_00: Um and I just took a step by step and every day I do a little bit and a little bit and a little bit.
• 19:30
  SPEAKER_00: And then eventually I just launched Aura Cru or a Aura clothing.
• 19:35
  SPEAKER_01: You were s you were relatively quite affordable then as well.
• 19:39
  SPEAKER_00: I tried to be.
• 19:41
  SPEAKER_01: Obviously, the cot the cost of yours versus other competitors, you was a lot more affordable.
• 19:47
  SPEAKER_01: And I you've done that with the quality was there as well.
• 19:50
  SPEAKER_00: That's that's literally what I wanted.
• 19:51
  SPEAKER_00: I didn't want people to have to like, you know, spend a lot on the clothes.
• 19:56
  SPEAKER_00: Um and I didn't want to kind of not have the quality there.
• 20:00
  SPEAKER_00: So I went to the best manufacturers in Portugal.
• 20:03
  SPEAKER_00: Um the swimsuit manufacturers actually like cater for Dior and stuff, so they were like super good quality, all made from recycled ocean plastic.
• 20:12
  SPEAKER_00: Um and yeah, I mean the reason why they were more affordable more expensive than I would have liked them to be, because I would have sold them at like high street prices, is because I was going in buying small quantities, and obviously when you have small quantities the like cost is much larger, and I had to at least break even.
• 20:34
  SPEAKER_00: Um but yeah, so I did try to sell them for as like less as for as cheap as I could, but yeah.
• 20:43
  SPEAKER_01: I'm gonna say your swimwear at the time though, that was literally flying off of the website.
• 20:49
  SPEAKER_00: Yeah, that was that was crazy.
• 20:50
  SPEAKER_00: I remember like launching that and I did a lot a lot of like marketing beforehand and just to like get people excited.
• 20:57
  SPEAKER_00: And I thought to myself, oh it'll take me like a good while to like sell and stuff.
• 21:02
  SPEAKER_00: I believe my like one piece zip first time round sold out like within like the first week or so.
• 21:09
  SPEAKER_02: I hadn't long had my surgery when I bought that and I felt a million dollars.
• 21:14
  SPEAKER_02: Because it takes you a long time to feel good in your skin and and finding clothes that aren't like smock dresses and oversized things to feel good.
• 21:25
  SPEAKER_02: And obviously a swimsuit, you can't wear an oversized swimsuit.
• 21:29
  SPEAKER_02: But I felt a million dollars.
• 21:31
  SPEAKER_02: It was it was so good.
• 21:33
  SPEAKER_00: That's so good to hear.
• 21:35
  SPEAKER_02: But I mean that that chapter ended or paused, whatever the future may hold for it.
• 21:40
  SPEAKER_02: And you've been very busy the last six months as the little extra behind us that people can't see, unfortunately.
• 21:47
  SPEAKER_02: You kept that so quiet as well.
• 21:50
  SPEAKER_00: I think for the first little while I I definitely did keep my pregnancy quiet, only because I'm not sure how like you guys felt, but having a chronic illness.
• 22:00
  SPEAKER_00: You just don't know what's gonna happen.
• 22:02
  SPEAKER_00: And I was told I was high-risk pregnancy and I was worried about like all my scar tissue and stuff.
• 22:08
  SPEAKER_00: Um I was worried about delivery.
• 22:09
  SPEAKER_00: So what I didn't want to do is I just didn't want to jinx or like preempt or like kind of make it wrong move just in case something happened.
• 22:19
  SPEAKER_00: And like touch wood.
• 22:20
  SPEAKER_00: Um I was all good and um nothing bad happened.
• 22:25
  SPEAKER_00: But you know, it's quite scary having a chronic illness and being pregnant because you just you're kinda like waiting, as horrible as that sounds, waiting for something bad to happen because we just can't catch a break, can we?
• 22:38
  SPEAKER_02: No.
• 22:39
  SPEAKER_02: I mean, were you given any advice?
• 22:41
  SPEAKER_02: I mean, our babies were born a few weeks within each other.
• 22:45
  SPEAKER_02: Um but were you I know I wasn't, but were you given any extra support or extra advice or anything to support you with the fact that you were pregnant with a chronic illness?
• 22:54
  SPEAKER_02: Because I I was deemed high-risk as well.
• 22:56
  SPEAKER_00: Yeah.
• 22:57
  SPEAKER_02: But I wasn't given any extra support or guidance or anything.
• 23:01
  SPEAKER_02: Yeah, consultant led.
• 23:02
  SPEAKER_00: Yeah.
• 23:02
  SPEAKER_02: But and then a C section, I had to have one, I can't give birth naturally because of surgeries.
• 23:07
  SPEAKER_02: Yeah.
• 23:08
  SPEAKER_02: But in terms of like what to expect or what might happen after, nothing.
• 23:12
  SPEAKER_00: Nothing as well for me, to be honest.
• 23:14
  SPEAKER_00: Um I had a few conversations with with my stoma nurses and they just said not much will change with your stoma and stuff.
• 23:23
  SPEAKER_00: Oh yeah.
• 23:23
  SPEAKER_00: So I was like, okay.
• 23:24
  SPEAKER_00: They said it'll eventually get bigger as your belly gets bigger, but in terms of like pregnancy and stuff, because I was like, where will my like intestine go when the baby's like pushing?
• 23:35
  SPEAKER_00: I was like trying to work out in my head.
• 23:37
  SPEAKER_00: Um, but no, I didn't I'm the same as you.
• 23:40
  SPEAKER_00: I was consultant led and I had good consultants, um, but not so much support from the stoma side of things.
• 23:49
  SPEAKER_02: A lot of people don't share as much because you are afraid of what might happen.
• 23:54
  SPEAKER_02: Um I know for me I I chose to share mine for for that reason because not a lot was out there that I could see.
• 24:03
  SPEAKER_02: Um I mean, you it wasn't the pregnancy with a stoma, that's not your story, it was after the pregnancy for you.
• 24:11
  SPEAKER_01: And how did you manage with your stoma?
• 24:13
  SPEAKER_01: Because obviously I follow a few people, and there's one lady that I remember that done a lot about after protectomy surgery and having pregnancies.
• 24:26
  SPEAKER_01: Is it Bag Mama?
• 24:29
  SPEAKER_01: All right, the Australian, the lady Australian or New Zealand.
• 24:32
  SPEAKER_00: I think I know who you're on about.
• 24:34
  SPEAKER_01: Um obviously I followed her and she always did the good, the bad and and the ugly.
• 24:39
  SPEAKER_01: Yeah.
• 24:40
  SPEAKER_01: I mean, more recently there is one person that I can think of that has had two children post-proctectomy surgery.
• 24:49
  SPEAKER_00: Um but they tend to post more on the negative rather than I think that's what I was kind of concerned about because I feel like your story was positive mostly with your pregnancy and obviously having a sober in pregnancy, but there can be a lot of negative stuff.
• 25:07
  SPEAKER_00: And don't get me wrong, you need to know what other people have experienced.
• 25:11
  SPEAKER_00: So I suppose I'm that kind of person.
• 25:13
  SPEAKER_00: I need to know what has happened so I can kind of mentally prepare myself.
• 25:18
  SPEAKER_00: But I feel like I just didn't want to I just didn't want to like kind of get myself too wrapped up in the negativity of things.
• 25:27
  SPEAKER_01: Neither time that's completely understandable.
• 25:29
  SPEAKER_01: I mean that you know, for instance, if you were following Rach's jewelry whilst your story whilst you was pregnant and with the stoma and everything else, you know, you posted both both the good and the bad.
• 25:42
  SPEAKER_01: Whereas there's another person that I can think of in the stuff that they posted during their pregnancies.
• 25:47
  SPEAKER_00: Yeah.
• 25:47
  SPEAKER_01: And if there was somebody that had fallen pregnant after protectomy surgery and they was looking at that content, it'd be a bit like, oh yeah, am I doing the right thing?
• 25:58
  SPEAKER_01: Yeah, um i you know, because it's said to that that falling pregnant and your fertility and everything following protectomy surgery is difficult, and falling pregnant can be difficult.
• 26:09
  SPEAKER_01: And then obviously you might not be able to give birth naturally, and you need to have a C-section and other bits and pieces.
• 26:15
  SPEAKER_01: So it's it's a it's a worry anyway.
• 26:19
  SPEAKER_01: And then with being chronically ill, you don't want to say anything for the first 12 weeks.
• 26:24
  SPEAKER_00: No, definitely not, and I'm such a worrier.
• 26:26
  SPEAKER_00: Um, I'm a massive worrier, so yeah, I kind of want to just keep it between me and the family for a little while until I knew everything was going smoothly, and then I shared a little post just to say, hello, me again, and I'm pregnant.
• 26:40
  SPEAKER_00: Um and then eventually, like I've been doing a lot of work with Pelican with like kind of posting things about my pregnancy or writing blogs about my pregnancy.
• 26:49
  SPEAKER_00: So I've been more open about it now, but I think at the time, one I had so much to sort out, like having a baby so expensive.
• 27:00
  SPEAKER_00: Um, but it just had so much to sort out.
• 27:03
  SPEAKER_00: I was in the middle of moving houses, and um obviously I don't live close to family, um, so we kind of had to do everything on our own, and then obviously whilst being pregnant and working full-time and still travelling to London for work and stuff.
• 27:16
  SPEAKER_00: So it was it was a lot to process, and yeah, I guess in a way I'm glad I was that busy because if I wasn't, I would have just sat there and worried about every little thing.
• 27:27
  SPEAKER_00: Um but yeah, I think it's just me.
• 27:30
  SPEAKER_00: I think my illness has affected me in a different way, probably.
• 27:35
  SPEAKER_00: So I do worry and I do like get concerned about things and I try not to I didn't even have a baby shower because I was just worried about people getting me gifts and something happening and stuff.
• 27:46
  SPEAKER_00: Um but it was also things like uh maybe my consultants didn't help because instead of putting me at ease, I remember the first consultant I went to and I asked to change.
• 27:56
  SPEAKER_00: She said to me, She went through like the C-section and she was like, Oh yeah, and there's a risk of this happening and a high risk of this happening and a high risk of this happening.
• 28:06
  SPEAKER_00: And I was just sat there like, I'm gonna die.
• 28:09
  SPEAKER_00: Like this is it was crazy.
• 28:11
  SPEAKER_00: And then afterwards I was like, I need to change.
• 28:14
  SPEAKER_00: I think my family asked me a few times, like, what kind of help are you getting?
• 28:17
  SPEAKER_00: And I'm like, Well, I'm consultant-led.
• 28:19
  SPEAKER_02: Me, myself, and I helped, that's what you were getting.
• 28:22
  SPEAKER_02: It's yeah, and and mind-blown.
• 28:25
  SPEAKER_02: And there's you know, there are plenty of women that have pregnancies with stomas.
• 28:29
  SPEAKER_02: And I think the way I it was pitched to me by the consultant was, yeah, yeah, we see it a lot.
• 28:34
  SPEAKER_02: Okay, so what can you d tell me about it then?
• 28:37
  SPEAKER_02: It was kind of like it's just like, you know, just another thing, it's okay.
• 28:41
  SPEAKER_02: Okay.
• 28:42
  SPEAKER_02: It's yeah, it's it's I don't know.
• 28:44
  SPEAKER_00: It's so like blase about it.
• 28:46
  SPEAKER_00: Yeah.
• 28:46
  SPEAKER_02: And if you've got that you you know, you've been through that trauma through your childhood living with your condition, they will have seen your notes and your history.
• 28:55
  SPEAKER_02: Yeah.
• 28:55
  SPEAKER_02: They should have acknowledged that and they should have offered you support with that.
• 28:59
  SPEAKER_02: Yeah.
• 28:59
  SPEAKER_02: That's yeah, I just don't think it's good enough.
• 29:02
  SPEAKER_01: It's not.
• 29:02
  SPEAKER_01: I mean, it's like for me, the the biggest turn off for me with regards to pregnancy is the fact that I can't give birth naturally.
• 29:10
  SPEAKER_01: I've got scar tissue for my crowns, I've got scar tissue for my endometriosis, my cervix is inverted, and not only is it inverted, it's also tethered by scar tissue.
• 29:21
  SPEAKER_01: So that is not an option, but it's just Did you what how did you give birth?
• 29:26
  SPEAKER_00: Uh C-section.
• 29:27
  SPEAKER_00: Yeah, sure.
• 29:28
  SPEAKER_00: They said they said to me, you can have a natural birth if you want to, but it's really high risk.
• 29:33
  SPEAKER_00: And I was like, I've I'm not gonna go through the whole pregnancy and then risk it right at the end.
• 29:38
  SPEAKER_00: I just I want to see I wanted a C-section anyway.
• 29:40
  SPEAKER_00: Yeah.
• 29:41
  SPEAKER_00: Um But yeah, it all went well.
• 29:45
  SPEAKER_00: Um lost a lot of blood though because of all the scar tissue.
• 29:49
  SPEAKER_00: Um and then so I was very like in Lala Land because I had the baby on me at the time, but the surgeon was saying she's losing a lot of blood.
• 29:58
  SPEAKER_00: Can you go get her a blood bag?
• 30:00
  SPEAKER_00: Um they came in and they got the wrong blood.
• 30:03
  SPEAKER_00: So then they had to go back out and we had to wait.
• 30:05
  SPEAKER_00: But I didn't know this was happening.
• 30:06
  SPEAKER_00: I was just like, Oh, my baby's here.
• 30:08
  SPEAKER_00: But my partner was panicking.
• 30:10
  SPEAKER_00: He was like, Can't believe they got the wrong blood.
• 30:12
  SPEAKER_01: So you say did your C section take longer than normal?
• 30:16
  SPEAKER_00: Um, I don't know.
• 30:17
  SPEAKER_02: I it was all such a blur, I'll be honest.
• 30:20
  SPEAKER_02: Um I know they told me to be prepared for it to take longer because of the scar tissue.
• 30:24
  SPEAKER_02: But they they should allow for that.
• 30:27
  unknown: Yeah.
• 30:27
  SPEAKER_02: I mean they definitely had to with you with the blood.
• 30:30
  SPEAKER_00: I think it was over two hours that I was there.
• 30:32
  SPEAKER_00: Um but I can't quite tell because of just how much of a blood.
• 30:37
  SPEAKER_02: You would have had a lot of drugs being pumped into you as well.
• 30:40
  SPEAKER_00: And then of course you're holding a new buld bundle of joy and you're just like so in love, and you just don't see the time go by.
• 30:46
  SPEAKER_00: Like I remember they took me into another room on my own with the with the baby, um, and my partner had to go up to the ward and he must have been there for an hour.
• 30:55
  SPEAKER_00: But I thought it was like twenty minutes.
• 30:57
  SPEAKER_00: That must have been the longest hour of his life.
• 30:59
  SPEAKER_02: I think it was I think it was So you don't I mean, and not enough credit is given to our partners when they're having to watch it unfold and knowing you've got a chronic illness, the thinking God knows what could happen.
• 31:12
  SPEAKER_02: Yeah.
• 31:12
  SPEAKER_00: No, definitely have to give them some credit when it's you.
• 31:16
  SPEAKER_00: They are amazing.
• 31:17
  SPEAKER_01: The other the other thing though is as well, is the recovery from a C-section is a Yeah.
• 31:22
  SPEAKER_01: A lot harder.
• 31:24
  SPEAKER_00: It was very hard.
• 31:25
  SPEAKER_00: Um I don't remember like soma surgery ever feeling that tough.
• 31:30
  SPEAKER_00: No, definitely was just I couldn't and they make you walk like six hours after.
• 31:36
  SPEAKER_00: Yeah.
• 31:36
  SPEAKER_00: And I was like, I can't do this, I can't do this.
• 31:39
  SPEAKER_00: And then they put my bag on upside down.
• 31:43
  SPEAKER_00: So so this is actually really funny.
• 31:46
  SPEAKER_00: So before they before I had my c-section, um, they brought someone in who was to like change my not change my bag, but kind of put my stomach away in like a little dressing.
• 31:59
  SPEAKER_00: Um so they've got more room, I guess, um, more of my stomach on show.
• 32:03
  SPEAKER_02: Oh, so you didn't have a bag on during the C-section?
• 32:05
  SPEAKER_00: No, I think they put like stuff on there and like I just I went in with it on, but then they took it off and put something else on.
• 32:12
  SPEAKER_00: And I took spear bag supplies.
• 32:15
  SPEAKER_00: Um and I remember saying to her, like, Johnny, just show you how I put it back on, just so you know.
• 32:22
  SPEAKER_00: And at the time I wanted it kind of because I I was I knew I'd be laying in bed, I wanted it to the side, yeah.
• 32:27
  SPEAKER_00: Kind of like there.
• 32:28
  SPEAKER_00: But I didn't get the chance to explain that.
• 32:30
  SPEAKER_00: Um she was like, No, no, I I know what to do, I've done this before.
• 32:33
  SPEAKER_00: I was like, Okay, okay, great.
• 32:35
  SPEAKER_00: So gave her one of the bags, cut it for her and everything, woke up, um went to like um went into the bed and stuff, and I was like, I'm just gonna check my bag just to like make sure that it's not filling up or because I started eating and drinking.
• 32:52
  SPEAKER_00: Oh my god, I was so hungry and thirsty afterwards.
• 32:54
  SPEAKER_00: Oh um, sorry.
• 32:58
  SPEAKER_00: I just remember that that thirst was unreal.
• 33:02
  SPEAKER_00: I had about like four or five different drinks on the go and like nothing was helping.
• 33:06
  SPEAKER_00: But anyways, it's probably because I lost a lot of blood.
• 33:09
  SPEAKER_00: Um anyway, so I was looking trying to look at my bag, and all I remember was like looking at it, and it was like really high up, and I was like so confused.
• 33:16
  SPEAKER_00: I was like, have they moved my soma?
• 33:19
  SPEAKER_00: Like, what's going on?
• 33:20
  SPEAKER_00: But they just put my bag on upside down, so like the like out.
• 33:25
  SPEAKER_02: Did you change it?
• 33:25
  SPEAKER_02: Because that would have been a good thing.
• 33:26
  SPEAKER_00: Well I couldn't get out of bed because my my feet, my feet, my legs like obviously weren't working for a good few hours, so I couldn't even like move them.
• 33:35
  SPEAKER_00: Um and yeah, I was just like, Do you know what?
• 33:39
  SPEAKER_00: I'm just gonna have to like wait, and thankfully it wasn't filling up much, so I waited until I could walk, and then that was my motivation for going to the toilet, and I had to change it.
• 33:49
  SPEAKER_00: Yeah.
• 33:50
  SPEAKER_00: But even then that was hard because everything is so sore and your skin is so like just flabby, and then you're just like, oh nothing knows where to settle, does it?
• 33:58
  SPEAKER_02: Because it's all just been manipulated so much.
• 34:01
  SPEAKER_02: Because we were talking before this about how our stomas have been since C-sections, and you like me, it's not been great.
• 34:11
  SPEAKER_00: Yeah.
• 34:11
  SPEAKER_02: I mean how it's Do you want to share how it's been?
• 34:15
  SPEAKER_00: It's mostly because I think my belly got big, so my stoma got big, and then my belly shrunk, so then my stoma didn't shrink, but my skin did, so I've got loose skin, and it's very hard for the bag to stick on loose skin.
• 34:29
  SPEAKER_00: Um I'm probably not as bad as you um in terms of like leaks and stuff.
• 34:35
  SPEAKER_00: So I have been getting the odd leak, but probably not half as much as what you've been getting.
• 34:41
  SPEAKER_02: But but you yourself, you said you might have to have it refashioned.
• 34:44
  SPEAKER_02: Yeah, yeah.
• 34:45
  SPEAKER_02: Which they don't just do for no reason.
• 34:47
  SPEAKER_02: You've really gotta need it, so it must it your skin's been so sore, hasn't it?
• 34:52
  SPEAKER_00: My skin is so sore, and I've got I keep calling them what are they?
• 34:55
  SPEAKER_00: Keep calling them um Granolas Granolas.
• 34:59
  SPEAKER_00: I can never say it.
• 35:00
  SPEAKER_00: I always go to my nurse and I'm like I'm like, my granolas are back.
• 35:05
  SPEAKER_00: Um but yeah, they are just everywhere and they're really painful and sore and itchy and bleeding and all sorts, so which makes get in your bag to do its job impossible, doesn't it?
• 35:17
  SPEAKER_00: Yeah, I mean I had them before pregnancy um and I was gonna have surgery before pregnancy, then I fell pregnant, and I remember when I was like maybe six months pregnant, I got called to go see um a gastroenterologist, and they said to me, Oh, we can't really do the operation now because you're pregnant, and I was like, I know.
• 35:34
  SPEAKER_00: I was like, Why why am I here?
• 35:36
  SPEAKER_00: I want places to be people to see, but anyways, um so yeah.
• 35:41
  SPEAKER_00: I think surgery is probably on the cards um for quite soon, which I'm actually excited about because I just want to like I don't want to faff around with my stoma, I just want everything to just be easy, like change my bag, put a new one on and not have to worry, especially with a little baby.
• 35:59
  SPEAKER_00: You just you know, you don't want to worry about things, you just want it to be easy and yeah, I think juggling a stoma in a baby can be quite like tiring as well.
• 36:09
  SPEAKER_00: So yeah, I'm looking forward to this operation.
• 36:11
  SPEAKER_02: I mean you don't have time to think about yourself, do you?
• 36:14
  SPEAKER_02: You can't do a stoma.
• 36:16
  SPEAKER_02: Yeah, you can't avoid it.
• 36:18
  SPEAKER_02: Like this there are times when you have to put them down to care for your stoma, and they they there's no option there.
• 36:24
  SPEAKER_02: If you're leaking, yeah, you can't say, Oh, I'll just change it later.
• 36:29
  SPEAKER_02: Oh, you can't.
• 36:29
  SPEAKER_00: Well no.
• 36:30
  SPEAKER_00: Even even when it's full, and like they cry and like this happened to me last night, did not have a good night's sleep.
• 36:36
  SPEAKER_00: Um but he was crying all night and my bag was so full, and I was like, This is gonna explode if I like don't go and do something.
• 36:45
  SPEAKER_00: And obviously, like he kicks and all sorts, he kicks my belly and all.
• 36:49
  SPEAKER_00: Um so I was like left him in the bed crying whilst I go whilst whilst I went to the loo and just gone over, I just had to.
• 36:56
  SPEAKER_00: I j I didn't have another choice, and I felt awful for it, but sometimes you just have to do what you have to do.
• 37:01
  SPEAKER_01: But I wasn't pregnant with the stoma, but I did have a stoma and an and a relatively new baby, and it's you kind of do I did it because like what suffers in it, what what's because nothing ev whatever you do is a not it's never a a good choice.
• 37:20
  SPEAKER_01: To be fair, for the two months that Maisie was in hospital with me, the nurse night nurses were fighting over who was gonna do the night feed.
• 37:28
  SPEAKER_01: But obviously I was still awake because even my bag needed emptying or the wound machine wasn't working and I'd have to have my dressing changed at four.
• 37:37
  SPEAKER_00: There's also things like so I've had a stoma for a good few years, so I know what works for me and what doesn't.
• 37:42
  SPEAKER_00: You never had that chance to learn about your stoma and to learn like you know, every stoma's got his quicks and you know, to learn like how you kept the bag and like Yeah, my mine was on a post-pregnancy belly on an emergency situation, so it was badly placed.
• 37:59
  SPEAKER_01: But because of the sepsis and because of where they removed all my stomach muscles, it was also on an on an incisional hernia.
• 38:06
  SPEAKER_01: Whilst having bydrological mesh, I remember they was arguing with me because the wound wasn't healing, they was like, Oh, we need to stick maggots in there.
• 38:14
  SPEAKER_01: I was like, you are not sticking magnets, you're not sticking maggots in my wounds.
• 38:19
  SPEAKER_01: You can debride it, but maggots is in like the medical maggots medical maggots to eat the dead tissue because obviously it wasn't growing back.
• 38:27
  SPEAKER_01: Oh my god.
• 38:28
  SPEAKER_01: Yeah.
• 38:28
  SPEAKER_01: I was like, no.
• 38:31
  SPEAKER_01: And that's like, oh, we can't deprive you because you can't be put onto g general anesthetic aesthetic again.
• 38:36
  SPEAKER_01: I was like, just I did it on gas and air because that just kicked me the gas and air.
• 38:41
  SPEAKER_02: She's made of hard stuff, she is.
• 38:43
  SPEAKER_02: You literally are.
• 38:44
  SPEAKER_00: It was lazy in a pink little Moses basket.
• 38:47
  SPEAKER_00: Whilst this is oh my Christ.
• 38:49
  SPEAKER_00: I need a bit of your strength here and there, you know.
• 38:51
  SPEAKER_00: I can't, you know, I'm worrying about little things.
• 38:55
  SPEAKER_00: But everybody's different.
• 38:57
  SPEAKER_01: It's you know, I'll be be honest with you.
• 39:01
  SPEAKER_01: I was you know, I wouldn't know what to do if I was pregnant with a stoma right now.
• 39:08
  SPEAKER_02: But you y like we you we all have to do.
• 39:11
  SPEAKER_02: We we we just have to get on with it.
• 39:13
  SPEAKER_02: That's part of you you haven't got a choice, have you really?
• 39:15
  SPEAKER_02: You've just got to adapt and I mean I was lucky that I had I always seem to be at my best when I'm pregnant.
• 39:22
  SPEAKER_02: And I think it's com there was about three or four of us that were pregnant at around the same time, and I won't say other people's names that that I knew well or were friends, and I think all of us were pretty sound during pregnancy.
• 39:34
  SPEAKER_02: You ride in that high, but it just seems to be after for most of us that it all went a bit upside down, whether it's the peristone or skin issues or the babies born that need a stoma or whatever, it just seems to be that it's afterwards.
• 39:50
  SPEAKER_02: And you know, people with chronic illnesses and Crohn's and I BD, it's seems to be a similar thing.
• 39:55
  SPEAKER_02: They seem to be well when they're pregnant, but then it's afterwards and nothing prepares you for that because you're tired, you're exhausted, you've got a new human to look after.
• 40:04
  SPEAKER_01: And the support just isn't out there, is it?
• 40:07
  SPEAKER_01: But you're both doing so amazing.
• 40:08
  SPEAKER_01: Yeah.
• 40:09
  SPEAKER_01: It's you know, the amount of women that are told, especially uh, you know, Crohn's disease and having a stoma placed, and you know, the amount of women that are told to have their babies before having proctectomy surgery because it's going to severely impact your fertility.
• 40:28
  SPEAKER_01: That is scary to be told as a woman, because for even in this day and age, the the whole thing about being a mum or having to be a mum is the forefront on everybody's mind of oh, you're married, but when are you having kids?
• 40:42
  SPEAKER_01: Why aren't you having kids?
• 40:43
  SPEAKER_01: Why aren't I the one that I get asked, well, why aren't you having another one?
• 40:47
  SPEAKER_01: It's relentless, isn't it?
• 40:49
  SPEAKER_00: I just feel like people need to chill on the whole, like, why aren't you having babies?
• 40:55
  SPEAKER_00: Or, you know, and I think as well, it's it's not fair.
• 40:59
  SPEAKER_02: There's a lot of women out there that that their fertility is is completely shot from these chronic illnesses and they really struggle.
• 41:07
  SPEAKER_02: And I, you know, I do appreciate how lucky I am to have two children.
• 41:13
  SPEAKER_02: Yes, they're born with the same condition, and yes, they have stomas, and yes, I wouldn't choose that, but I do have them and I'm really grateful for that f for that happening.
• 41:22
  SPEAKER_02: But it's it's difficult, isn't it?
• 41:24
  SPEAKER_02: Because so many people are out there struggling and I don't know, e support of any kind would be good, to be honest.
• 41:31
  SPEAKER_00: And this is why these conversations are so important, and this is why, you know, sharing stuff negative or positive or however you like just sharing your experience with things um is so important and is so like needed in our community, um, just to kind of like break down the stigma and chat about tough things.
• 41:51
  SPEAKER_00: Yeah.
• 41:52
  SPEAKER_01: Because the the other thing is there are a lot of women that have one child and then really struggle to conceive a second.
• 41:57
  SPEAKER_01: Yeah.
• 41:58
  SPEAKER_01: And it's, you know, I the I I'd be rather rich right now if I charged for every time people ask me when I was going to have another one.
• 42:07
  SPEAKER_01: And when you turn around and say, like, you don't want to talk about it, or you you joke because you don't want to have to sit there and explain your whole medical history to somebody else in a general conversation.
• 42:18
  SPEAKER_01: And it's just like, well, why do I have to explain myself?
• 42:20
  SPEAKER_01: I shouldn't have to tell you.
• 42:22
  SPEAKER_00: People shouldn't really be asking to be able to do that.
• 42:24
  SPEAKER_00: But they do.
• 42:24
  SPEAKER_00: Yeah.
• 42:25
  SPEAKER_00: I I personally think it's so rude for someone to ask, Are you having a second one?
• 42:30
  SPEAKER_00: or you know, because you know, people aren't lucky enough um to just like get pregnant on the spot, or pe people don't want to have any more kids.
• 42:40
  SPEAKER_00: I've got friends that have just got the one and they're happy and they're healthy and they don't want any more.
• 42:45
  SPEAKER_00: Um so yeah, I think I just think people need to just chill and not ask personal questions.
• 42:54
  SPEAKER_01: But they will always ask those personality.
• 42:56
  SPEAKER_01: Yeah, yeah.
• 42:58
  SPEAKER_01: What advice would you give to someone with regards to accepting their stoma if they are struggling with things post ops in general?
• 43:11
  SPEAKER_00: I'd say the first thing, and I always preach this, is just be kind to yourself.
• 43:16
  SPEAKER_00: I think having an operation is such a big deal, managing life is such a big deal.
• 43:21
  SPEAKER_00: And I think often we can be so hard on ourselves and we can compare ourselves to other people, compare ourselves to people, you know, that have got what we don't have.
• 43:31
  SPEAKER_00: And but I just think just be kind to yourself, just take it easy, um put yourself first, especially the first few months of having a stoma.
• 43:39
  SPEAKER_00: You need to like prioritize yourself and your health and come to terms with it.
• 43:45
  SPEAKER_00: And um yeah, just just be really kind to yourself.
• 43:48
  SPEAKER_00: And my top tip is fake it till you make it.
• 43:50
  SPEAKER_02: Oh yeah.
• 43:51
  SPEAKER_00: I think just acting confident can sometimes make you feel confident.
• 43:56
  SPEAKER_00: Um even things like putting on your best dress and you know, doing your hair and makeup can make you feel a bit better than it, you know, you you did a few hours ago.
• 44:06
  SPEAKER_00: Um so yeah, just just be kind to yourself, fake it till you make it and reach out if you need any help.
• 44:12
  SPEAKER_00: There's so many amazing people out there um with stories and with like experiences and they can even just watching their social media or like, you know, watching YouTube or wherever, can just like brighten your day and make you feel a little less alone.
• 44:29
  SPEAKER_00: Um because I don't know about you guys, but when I first had surgery, like there was no one on social media, I don't think.
• 44:35
  SPEAKER_01: There wasn't social media.
• 44:38
  SPEAKER_00: Yeah, but I remember feeling like I was the only person in the world that had this.
• 44:43
  SPEAKER_00: But thankfully there's like so many people out there now, and yeah, if I'm ever if I'm ever having a bad day, I'll you know, look at a few Instagram posts and I'm like, oh, you know, they look amazing.
• 44:55
  SPEAKER_00: I am gonna look like that.
• 44:57
  SPEAKER_02: It's been so lush having you here, especially in person, and you are so gracious and divine, and the way you carry yourself, you have such a calm I feel so calm and relaxed after this.
• 45:08
  SPEAKER_02: I feel like I've had a spa session.
• 45:10
  SPEAKER_00: Oh, you feel like you've just put your PJs on.
• 45:12
  SPEAKER_02: Yeah, like yeah, that's how I started, and that's how I'm gonna finish.
• 45:15
  SPEAKER_02: Um, but thank you so much.
• 45:17
  SPEAKER_02: And you you know what you accomplished with Aura Cloven and the way you've come through your childhood, you went through so much trauma, you are now a mother yourself, and you sharing your story is gonna help so many people.
• 45:29
  SPEAKER_00: Oh, thank you guys for having me.
• 45:31
  SPEAKER_00: Honestly, it's it feels amazing to be sat on a table with two very inspiring women, two beautiful women.
• 45:38
  SPEAKER_00: And I just feel so lucky, I feel so happy after this.
• 45:42
  SPEAKER_02: Well, you are one of the OGs like us, and it's just lush having you here.
• 45:46
  SPEAKER_02: But thank you for those of you that have tuned in for this episode of Beyond the Pouch, and thank you so much, Ange.
• 45:52
  SPEAKER_02: It's been a pleasure.
• 45:53
  SPEAKER_02: And we hope to see you again soon.