Latest / Beyond the Pouch / E11: Anna Opens up About Her Journey to a Reversal and Back to a Stoma

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E11: Anna Opens up About Her Journey to a Reversal and Back to a Stoma · Beyond the Pouch

• 0:00
  SPEAKER_03: Hi guys, welcome to Beyond the Pouch, a podcast series brought to you by Pelican, Ekin, and Respond with your hosts Rachel and Louise.
• 0:08
  SPEAKER_03: 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.
• 0:16
  SPEAKER_03: So you can get to know them beyond the pouch.
• 0:20
  SPEAKER_01: Welcome back for another episode of Beyond the Pouch.
• 0:23
  SPEAKER_01: If you don't already know it, this is a visual podcast, so make sure that you head over to Pelican's YouTube channel to watch the full episodes.
• 0:30
  SPEAKER_01: Today we are joined by Anna, who is a midwife working in Scotland.
• 0:34
  SPEAKER_01: Today she's going to be speaking about her journey to a reversal and back to a stoma.
• 0:39
  SPEAKER_01: So hi Anna.
• 0:40
  SPEAKER_03: Hi.
• 0:41
  SPEAKER_03: Hello, welcome, welcome.
• 0:42
  SPEAKER_03: You travelled a long way.
• 0:44
  SPEAKER_03: Ah, yes, we appreciate it.
• 0:45
  SPEAKER_03: Thank you for coming.
• 0:47
  SPEAKER_02: That's okay.
• 0:48
  SPEAKER_03: You are probably one of the rarest guests we've had, to be fair.
• 0:52
  SPEAKER_03: Would you agree?
• 0:54
  SPEAKER_01: Yeah, I had no idea what that was.
• 0:56
  SPEAKER_01: I mean, you're Dr.
• 0:57
  SPEAKER_01: Lou and you hadn't heard of it.
• 0:58
  SPEAKER_00: I'm not Dr.
• 0:59
  SPEAKER_01: Lou, I'm just you hadn't heard of it, then it's just have a lot of things in my brain.
• 1:04
  SPEAKER_01: Um I was gonna say, so obviously, you were diagnosed with necrotizing entracolitis at birth.
• 1:12
  SPEAKER_01: At birth, which is often a fatal disease, which obviously causes the gut to become inflamed and necrotic.
• 1:19
  SPEAKER_01: And I know that there are times that you can get obviously toxic megacodon with people with diverticulitis and things like that.
• 1:29
  SPEAKER_01: So, what exactly is necrotizin entrycolitis?
• 1:32
  SPEAKER_02: So, necrotisin entryclitis is just as you said, it's a gangrene to the bowel.
• 1:37
  SPEAKER_02: So there's different reasons why it happens.
• 1:40
  SPEAKER_02: So I was a term baby who got um necrotisin entryitis, which is really, really quite rare, and basically we think it's because I was starved of oxygen during my birth, so when my mum was in labour, um, and then preterm babies get it just because their gut hasn't quite developed as much as a term baby.
• 1:57
  SPEAKER_02: Um, but basically my bowel just started to die about kind of six hours old, so I was okay for a little bit, but I wouldn't feed, I was just kind of really irritable, nothing would settle me.
• 2:07
  SPEAKER_02: Um, and then I think a midwife just looked at me because my mum was a first-time mum, and she probably just thought, oh, this was normal, you know, a baby that won't feed at six hours.
• 2:14
  SPEAKER_02: That's not really hugely worrying sometimes.
• 2:17
  SPEAKER_02: Um, but a midwife just looked at me and was like, I'm not really sure about that, she doesn't look quite right, and took me over to the special care unit.
• 2:24
  SPEAKER_02: And um, they put me on antibiotics, but it was just a little bit too late, so I got rushed off to Liverpool, um, the Old Hay Children's Hospital, and basically went straight to emergency surgery and came out with a stoma.
• 2:35
  SPEAKER_02: So, how many hours old were you with that?
• 2:37
  SPEAKER_02: Um, so I was probably just about a day old when I got rushed into surgery.
• 2:41
  SPEAKER_02: Um, my dad had to follow up in the ambulance with my uncle driving him because obviously he was also really, really worried.
• 2:47
  SPEAKER_02: And my mum was just left behind in the local community hospital.
• 2:50
  SPEAKER_03: So, the C section or was it?
• 2:53
  SPEAKER_02: Uh she had a four-steps delivery.
• 2:55
  SPEAKER_02: Yeah.
• 2:56
  SPEAKER_03: Oh my god, that must have been horrific.
• 2:59
  SPEAKER_03: It must have been awful for them.
• 3:01
  SPEAKER_03: So, well, you're here, you're a midwife, which is incredible.
• 3:05
  SPEAKER_03: Um, and the emergency surgery, it wasn't the that wasn't the first and last, was it?
• 3:11
  SPEAKER_03: So you've had quite a few surgeries in your time.
• 3:14
  SPEAKER_02: Yeah, so in my first year of life I had nine surgeries, so some of them were stoma related.
• 3:20
  SPEAKER_02: I also had a Mickey button or a gastrostomy, so that's the tube that goes to feed you.
• 3:26
  SPEAKER_02: I also had central lines, so I've got two scars up at like the top of like above my heart, and then one up here.
• 3:31
  SPEAKER_02: And I've still actually got a bit of plastic in this one because it got infected, so they just had to pull out.
• 3:35
  SPEAKER_02: Um and then throughout my life I've had a three more surgeries.
• 3:40
  SPEAKER_02: So one when I was eight, one when I was 13, and then one last year.
• 3:43
  SPEAKER_01: I mean, do you ever do you remember anything about your life, obviously, like with first with the stoma and with obviously the feeding tube?
• 3:52
  SPEAKER_02: I remember quite a lot, actually.
• 3:54
  SPEAKER_02: There's like specific moments that sort of just come back to me.
• 3:57
  SPEAKER_02: Like I remember when we got rid of my Mickey button.
• 4:00
  SPEAKER_02: So basically, my parents had to just learn everything themselves.
• 4:04
  SPEAKER_02: There was a lot of adapting because we didn't really know anyone else that was the same as me.
• 4:07
  SPEAKER_02: Like there were children with stomas, but no one that had neck, and then no one was quite the same as me, so they just kind of had to go over what the doctors said, take it with a bit of a pinch of salt.
• 4:16
  SPEAKER_02: And you know, like as much as doctors say don't eat this, don't eat that, I was then a child who would just pick it bits and pieces.
• 4:23
  SPEAKER_02: Um so one day I was on a caravan trip with like my whole family, and my Mickey Button got infected, and the only resolution we could think of was just to take it out.
• 4:31
  SPEAKER_02: Change it, yeah.
• 4:31
  SPEAKER_02: But we didn't put one back in, and then we went to the hospital, like, oh well, she's eating, that's fine.
• 4:36
  SPEAKER_02: So it was never the plan, it was just that it worked for us.
• 4:39
  SPEAKER_02: Oh, so you didn't need to replace it then, it closed up and yeah, so I've still got the hole there now, um, but obviously I don't need the the feeding tube.
• 4:47
  SPEAKER_02: So I remember kind of little bits and pieces like that.
• 4:50
  SPEAKER_02: That's quite cavalier though.
• 4:51
  SPEAKER_01: Oh, it's got infected, we'll take it out hospital.
• 4:54
  SPEAKER_03: Well, luckily for you, it wasn't uh you know, essential, so that if you were without it, it'd be alright.
• 5:00
  SPEAKER_02: I definitely not recommend for someone to do that, but it worked really well for us.
• 5:04
  SPEAKER_02: I think my parents just sort of, as much as criteria works, a lot of the time we didn't meet other children with stomas, it was mostly adults with stomas.
• 5:12
  SPEAKER_02: So like it was really, really different for them trying to take advice off people because they were sort of like, oh well, she's different because of her age, or you know, she's eaten, so why are we still needing to kind of feed her through TPN or through a so how long were you on TPN for then?
• 5:26
  SPEAKER_02: So I was on TPN, I think, for five years.
• 5:28
  SPEAKER_02: So five years with a mix, so like they started to wean me off it and just go through the Mickey button, and then eventually we just took that out.
• 5:38
  SPEAKER_03: My God.
• 5:39
  SPEAKER_03: Wow, that's amazing.
• 5:42
  SPEAKER_01: I was just gonna say, it's an adult having TPN and learning how to manage their lines and their feeds, and obviously set up nighttime feeds so they're not attached to the IV and the food drip all day, so it's all done over a period of 12 hours over the night time.
• 6:04
  SPEAKER_01: Do you feel like you had a normal childhood?
• 6:07
  SPEAKER_02: I mean, I think my parents made it as normal as they could, but there's a lot of things in my childhood that now when I look back, I'm like, oh, I'd missed out on this, but then I did this instead.
• 6:17
  SPEAKER_02: So that I don't think I missed out on things, it's just that I kind of did other stuff.
• 6:22
  SPEAKER_02: So um things like sleepovers, I didn't really go to sleepovers because I had a stoma, and you know, people would eat things like sweets, or like they'd drink lots of fizzy juice, and that doesn't really agree with stomas.
• 6:33
  SPEAKER_02: Yeah.
• 6:33
  SPEAKER_02: Um so I'd maybe like go and spend the evening there, but then I'd come home, I'd not stay over because my bag probably would burst and then having to deal with that.
• 6:41
  SPEAKER_02: Um I d I feel like I didn't really miss out on a huge amount, actually.
• 6:45
  SPEAKER_02: I just I did a lot of sports, so that got me involved without people actually realising that.
• 6:50
  SPEAKER_03: So, you couldn't, don't they?
• 6:52
  SPEAKER_03: Like, so I my little one had a stoma from a couple of weeks old and he's nearly eighty, he's still got it now.
• 6:58
  SPEAKER_03: And it we are approaching that age where sleepovers are gonna start, the thought of that and doing sports and all that.
• 7:05
  SPEAKER_03: So I can totally relate to your story more than anyone that's been on this podcast, to be fair, uh, from the parents' perspective.
• 7:12
  SPEAKER_03: And yeah, like I know I think, oh my god, he's gonna miss out on so much, but I think that sounds like what your parents do.
• 7:18
  SPEAKER_03: I just try and normalise everything and give him all the opportunities you can, but ultimately you can't take away the fact that you did have a stoma as a child, and it does create barriers, doesn't it?
• 7:29
  SPEAKER_03: And it does.
• 7:30
  SPEAKER_03: I mean, can you remember how you felt through your childhood carrying that with you, or because you didn't know any different?
• 7:37
  SPEAKER_03: It wasn't a thing.
• 7:38
  SPEAKER_02: It was very mixed, I feel like I don't think child mental health services were the way they are now as well.
• 7:43
  SPEAKER_02: So I think I could have probably done with some intervention then just because a lot of the time I felt like I hated myself, I hated my body, I couldn't understand why it happened.
• 7:51
  SPEAKER_02: Like a lot of sometimes I actually just wanted to die, I didn't want to be there, but then a couple of days later I'd be fine.
• 7:57
  SPEAKER_02: So like it's just that not understanding why it happened.
• 8:01
  SPEAKER_01: Was that more of the teenage teenager age?
• 8:04
  SPEAKER_02: It was yeah, it was around kind of like nine to twelve.
• 8:08
  SPEAKER_02: Teenage angst and emo phase and trying to get used to things such as like going from primary school to secondary school.
• 8:15
  SPEAKER_02: So doing that is hard enough.
• 8:17
  SPEAKER_02: Never mind then having to find a new load of teachers, trying to make them understand that you don't just need the toilet, like yeah, your bag's gonna blow off if you don't go.
• 8:25
  SPEAKER_02: Yeah, I mean there's some lessons where I had to go twice, and my teachers were really, really good at secondary school, but you could see the kids going while she was being and you wouldn't let me go, but she's now going again.
• 8:33
  SPEAKER_03: Oh, I know, yeah.
• 8:34
  SPEAKER_02: But I never actually told anyone I had a stoma, like none of the children.
• 8:37
  SPEAKER_02: Um no one knew I had one until I was 20 years old, but I had it reversed when I was 13.
• 8:41
  SPEAKER_02: So that's how well I managed to hide it.
• 8:43
  SPEAKER_03: You were stealth.
• 8:45
  SPEAKER_01: I mean, no one knew.
• 8:46
  SPEAKER_01: Wow.
• 8:46
  SPEAKER_01: At eight years old, you had to fur for surgery to create a santulli stoma.
• 8:50
  SPEAKER_01: Now, I've never heard of this.
• 8:54
  SPEAKER_01: Well, I couldn't be like Google on the way home or the train.
• 8:57
  SPEAKER_01: Um so you had a santulistoma to obviously to allow your bowels to open the traditional way as well as via your stoma.
• 9:05
  SPEAKER_01: And this is quite interesting because I think when you have stoma surgery, I don't think many people actually realise that they just basically loop your bowel off, which is why it's called a loop heliostomy, and they just divert it out via your stomach, and that's just how things are.
• 9:22
  SPEAKER_01: So your bowels are still in there, they've removed the affective part, they've basically done a resection and then given you a stoma.
• 9:29
  SPEAKER_01: But to obviously have a stoma that allows both output from your bottom and your stoma.
• 9:36
  SPEAKER_01: How on earth did you manage that?
• 9:37
  SPEAKER_01: Because you imagine, right?
• 9:41
  SPEAKER_01: You've had stoma surgery, you have a mucus builder, and whilst you're in hospital, the mucus comes out, but you've got a stoma and you're absolutely going, Oh my god, why is stuff coming out of my bum?
• 9:50
  SPEAKER_01: Yeah.
• 9:52
  SPEAKER_01: How on earth do you manage output coming both out of your stoma and your bottom, which is probably both the same consistency?
• 10:00
  SPEAKER_02: I felt like it was quite successful because to me it was a way to see in normality.
• 10:05
  SPEAKER_02: So it was like an experimental procedure for me.
• 10:07
  SPEAKER_02: I don't think it had really been done a huge amount because it was sort of suggested to us as a trial sort of period just to see how much I'd cope.
• 10:14
  SPEAKER_02: Um, so basically, I was really desperate for a reversal, so anything in the direction of a reversal.
• 10:19
  SPEAKER_02: I was like, I'll take it, I'll do it, let's do it.
• 10:21
  SPEAKER_02: Um I don't remember being in so much pain as the stoma, and even like my bomber didn't feel like I was particularly sore.
• 10:28
  SPEAKER_02: I felt like it was quite manageable because it was like a half and half.
• 10:30
  SPEAKER_02: I can imagine it's really difficult having a stoma and then just going straight to a reversal, whereas I had that little kind of grace period where I could learn how to use my back passage as well as do my back power.
• 10:42
  SPEAKER_03: You having your stoma so, you know, so early in life, your your rectal muscles and everything down there wouldn't have learnt to poo.
• 10:52
  SPEAKER_03: So you had to you were effectively training them to manage that, weren't you?
• 10:57
  SPEAKER_02: Yeah, I don't remember passing a huge amount of mucus as a child or anything either.
• 11:00
  SPEAKER_02: So I don't think I've really had to use all their muscles, and I imagine that sort of just training period actually really helped me when it came to getting a reversal done.
• 11:09
  SPEAKER_03: So when you had the reversal done and you were using your back passage, were you you know, how were you did you feel healthy?
• 11:18
  SPEAKER_03: Did you how did it go?
• 11:20
  SPEAKER_03: How was your recovery?
• 11:21
  SPEAKER_03: I mean, 13 and going through that, my God.
• 11:24
  SPEAKER_02: I mean, I was obviously excited because I didn't want a bag at this point.
• 11:27
  SPEAKER_02: Like I just I would just say how much I hated myself and things.
• 11:31
  SPEAKER_02: I blamed my parents for it.
• 11:32
  SPEAKER_02: It was all just awful, and the only thing I could see was the chance to get a reversal.
• 11:38
  SPEAKER_02: Um so then when I got it done, I felt great.
• 11:40
  SPEAKER_02: You know, I sent my dad to Saints Free's to get me normal knickers for the first time because I'd been wearing supportive knickers my whole life.
• 11:45
  SPEAKER_02: Yeah.
• 11:45
  SPEAKER_02: So like actually to wear knickers that I blew my belly button.
• 11:48
  SPEAKER_02: Like normal people wouldn't even think of that.
• 11:50
  SPEAKER_02: But to someone who's had a stoma their whole life, that's like amazing.
• 11:54
  SPEAKER_02: I'd never thought I'd be so excited about knickers.
• 11:57
  SPEAKER_02: I still do get quite excited about knickers now, actually.
• 12:01
  SPEAKER_02: Um so like even just stuff like that, and you know, like going on holiday for the first time and wearing a bikini, and as much as I had scars, I don't mind mascars, mascars are great.
• 12:11
  SPEAKER_02: I love them, I've always loved mascars, and I knew that people would look at them, but I felt like they'd look at them less than just like a pouch on my tummy.
• 12:19
  SPEAKER_02: Um so like I just really enjoyed the first, I'd say like year and a little bit more, and then kind of school got a bit more difficult.
• 12:26
  SPEAKER_02: I was needing to go to the toilet quite a lot.
• 12:28
  SPEAKER_02: Um, the frequency from emptying my bag to actually then go into the toilet just felt like a lot more.
• 12:34
  SPEAKER_02: My body just couldn't hold it the same way as it does in a stoma bag.
• 12:38
  SPEAKER_02: So I was just having to rush.
• 12:39
  SPEAKER_02: I'd sometimes get like a literally like a two-minute notice, and I'd have to be like, oh, I need to go to the toilet and go.
• 12:45
  SPEAKER_02: Um or like sometimes I'd even go home to have my lunch and then come back, which isn't traditional in English schools, and but they let me do it just because they knew as soon as I eat, that's it, I'd go to the toilet.
• 12:55
  SPEAKER_02: That's good.
• 12:55
  SPEAKER_02: And I had a 20-minute transit time.
• 12:58
  SPEAKER_02: So like from going from eating to go in the toilet, it was 20 minutes.
• 13:01
  SPEAKER_02: So did you have a J pouch or were you just I was just connected, so I didn't I don't have enough battle to have a J pouch because I originally had said, oh, is there an option for even something like that?
• 13:11
  SPEAKER_02: But I just don't have enough left.
• 13:15
  SPEAKER_03: Yeah.
• 13:18
  SPEAKER_01: That's the thing though, and obviously reversals don't get spoken about enough at all.
• 13:23
  SPEAKER_03: It's such a hard topic to talk about, isn't it?
• 13:26
  SPEAKER_03: Because people have such drastic differences in their experience.
• 13:30
  SPEAKER_03: Some people love it, some people are traumatized by it, but there's you know, yeah.
• 13:36
  SPEAKER_01: I mean so obviously you go from obviously having a stoma to having a reversal, and the problem that you've got when you've had that much bowel removed, when you've had a reversal, it's just never the same.
• 13:51
  SPEAKER_01: You will never have a normal bowel movement.
• 13:55
  SPEAKER_01: It's basically like molten lava, I think, was a term that somebody coined, and it's it's quite it's it's quite upsetting because obviously most surgeons will promote a reversal if they feel that you are able to have one.
• 14:13
  SPEAKER_01: But going from having bowel removed, most people think, oh, I've had my bowel removed, I've had a stoma, I'm gonna have my reversal, things are gonna go back to normal, but that's not always the case.
• 14:23
  SPEAKER_01: And to be fair, you don't really hear from people if they've had a successful reversal, they're off living their life and living the dream.
• 14:31
  SPEAKER_03: Exactly.
• 14:32
  SPEAKER_03: You don't tend to if yeah, I suppose when people go quiet, it's either because they're really struggling or they're just living their best lives, so they're not feeling like sharing because there's nothing to share as such, yeah.
• 14:45
  SPEAKER_03: Yeah.
• 14:45
  SPEAKER_02: I was always told my stomach would be permanent, so my first one was to be permanent.
• 14:49
  SPEAKER_02: It's just that I was an adamant teenager, and that's how I ended up with a reversal.
• 14:53
  SPEAKER_02: And my my doctor, he had me from the day I came in from emergency surgery all the way up until I was 18.
• 14:59
  SPEAKER_02: So you kind of just watched me through that journey.
• 15:01
  SPEAKER_02: I think he just must have hit a point and gone, right?
• 15:03
  SPEAKER_02: We'll give it to you, it's fine.
• 15:05
  SPEAKER_02: And um, I was doing well to be fair, and he had said to me, You can get a stoma back if it doesn't work, it's absolutely fine.
• 15:11
  SPEAKER_02: Come back to me, and I just persevered with it, but it just got too much.
• 15:14
  SPEAKER_02: I think when I hit university, I was just like, No, I can't do this.
• 15:18
  SPEAKER_02: And COVID sent it once again into like another level because the toilets were getting locked because of COVID and you couldn't get in the shops because usually you'd just run in, empty bag, run back out if you were out for a day or something, but you couldn't do that.
• 15:30
  SPEAKER_02: No.
• 15:30
  SPEAKER_02: So I think it just all got to me a little bit, and I ended up back with the stoma.
• 15:35
  SPEAKER_03: So, how I mean, how mentally you've gone back and forth, back and forth.
• 15:41
  SPEAKER_03: Where are you at now with your stoma?
• 15:44
  SPEAKER_03: I'm never getting a reversal again.
• 15:46
  SPEAKER_03: And she's in that team.
• 15:47
  SPEAKER_03: Oh, I'm in that team as well.
• 15:48
  SPEAKER_02: I'm kind of just waiting to get my Barbie buttley.
• 15:50
  SPEAKER_02: I mean, I'm quite satisfied.
• 15:53
  SPEAKER_01: I mean, with your second stoma, I mean, what tests did you have over that three-year period of scans and wh why were you begging and pleading so much to have the stoma put back into place?
• 16:04
  SPEAKER_02: Um so during like the time I was sort of asking for it back, I was sent for scopes, which the first one had a panic attack in because they it's just I it was so tight there because I was holding them basically water that then to put a scope in there, like my body just doesn't allow that.
• 16:20
  SPEAKER_02: Um so then I had to get sedated when I came back to get it done and use the gas snare.
• 16:24
  SPEAKER_02: Um and they also used like a pediatric scope instead.
• 16:27
  SPEAKER_02: Um but they found nothing because originally they were actually looking to see if the pain um was due to like another disease, like maybe if I had even Crohn's or something, like just something else that might be causing it, along with the fact I did have neck at one point.
• 16:41
  SPEAKER_02: Um, but they found nothing from it.
• 16:42
  SPEAKER_02: They just sort of said, Oh well, it's just that you've got short bowel syndrome.
• 16:46
  SPEAKER_02: Um they tested like to see if it was bowel acid malabsorption, which it probably is a little bit, but again, it's not the main cause of all my problems.
• 16:53
  SPEAKER_02: Um, and they just did all blood tests and I had a CT scan as well, just with contrast, just to see how much bowel I had left.
• 17:00
  SPEAKER_02: Yeah.
• 17:00
  SPEAKER_02: Um, but the main reason I got it reversed was the urgency and like the embarrassment of having an accident because I used to walk back from like my granddad's, my nun and grandads to my parents, which is like a 10-minute walk max, and I'd have an accident.
• 17:12
  SPEAKER_02: And I'd be walking along the street in like a pair of shorts in the summer and have an accident, and it'd be all running down my leg, and it's just not a life I wanted to live anymore.
• 17:19
  SPEAKER_01: Is it I was diagnosed with bile acid malabsorption?
• 17:23
  SPEAKER_01: Oh good God.
• 17:26
  SPEAKER_01: So I had my reversal in 2012, the BAM was diagnosed in 2014 because things were going through me that quickly, and the fear that you live with of having an accident when your bow transit is that terrific quick.
• 17:43
  SPEAKER_01: And I remember one night walking my friend home, and I was actually sober, and she'd had a few to drink, and she'd wet herself walking up the she'd wet herself walking up the driveway because it she'd been holding it that long.
• 17:58
  SPEAKER_01: And I was like, for the love of God, give me your front door key so I can get in through the front door.
• 18:03
  SPEAKER_01: And she was that dry, she said, I had an accident, and there was nothing worse than the Monday morning of passing each other's clean knickers back over in the scary bag.
• 18:14
  SPEAKER_01: Yeah, yeah.
• 18:15
  SPEAKER_01: Because obviously, I'd washed hers, I'd washed the ones I borrowed off of her at home, and she'd washed mine, and we might give it to handing them back over, and it was just but having fast bower transit after a reversal, living with that is horrid because they'll give you laperamide that'll work for a short period of time, and then that doesn't work anymore, and then they're like, okay, well, we'll pop you up to laperamide and codeine, and that'll work for a little while, and then that doesn't work anymore, and then they're like, Oh, well, if we give you obviously, oh, I can't even remember the name of it now.
• 18:52
  SPEAKER_01: Oh, yes, I do um colostogel or cholosavalium.
• 18:55
  SPEAKER_01: Oh, I I use colostyrimine or something like that.
• 18:58
  SPEAKER_01: That's sachet.
• 18:59
  SPEAKER_01: Yeah, but um, but they they take you through all these steps and everything works for a short period of time and then it stops working because it is it's literally like your digestive system is like a speeding bus and it that'll work as a temporary break, and then your body gets used to it, so it doesn't work anymore.
• 19:21
  SPEAKER_01: And I feel that it's a lot to put somebody through to then go, then to have you pleading to have a stoma put in put back in child.
• 19:30
  SPEAKER_03: I mean, how do you did you have did you find yourself as you got into your late teens having to advocate for yourself and having to speak up and how you know I feel like I did.
• 19:43
  SPEAKER_02: So the difficulty as well I found was that once you hit the age of 16, you go into adult services.
• 19:49
  SPEAKER_02: So I had this horrible crossover period where I was kind of still under my pediatric services.
• 19:54
  SPEAKER_02: It was great, I loved it, you know.
• 19:55
  SPEAKER_02: They'd play therapists, like the walls were colourful, it was just beautiful.
• 19:59
  SPEAKER_02: They had a brand new hospital when I was getting discharged, and it was just lovely.
• 20:02
  SPEAKER_02: And I just really enjoyed pediatric surgeries.
• 20:04
  SPEAKER_03: When you're spending all those years in surgeries in and out, you must have felt I know, like for for my son, he'll go, we'll go to hospital, like he's just at he hasn't long had his 14th surgery.
• 20:14
  SPEAKER_03: He'll walk in and he's five five in the nurses, and he's like, Oh yeah, like walking down the ward like he's the boss, like he, you know, because it's a second home, isn't it?
• 20:23
  SPEAKER_03: And like you said, it's colourful, it's distracting.
• 20:26
  SPEAKER_03: God, what was that transition like from that to awful?
• 20:30
  SPEAKER_02: I honestly I have been through so many adult surgeons, I can't even remember them all.
• 20:36
  SPEAKER_02: Because each one I went to was like, I can't help you, I can't help you.
• 20:39
  SPEAKER_02: Next to near needle problem, I can't help you.
• 20:41
  SPEAKER_02: Why were they so adamant against you having a statement place back in the first place?
• 20:45
  SPEAKER_02: I so I just kept getting told all the risks.
• 20:48
  SPEAKER_02: Like one of my surgeons just came, just kept saying, You will have a hernia in six months.
• 20:52
  SPEAKER_02: So I was like, Okay, I never had a hernia with my first one, okay, that's fine.
• 20:56
  SPEAKER_02: Um, just say obviously the output being really quick, but again, it was like that as a reversal anyway.
• 21:03
  SPEAKER_02: It's actually slowed down since I've had my stoma just because my body can hold on to it, whereas my back passage was not holding on to it.
• 21:10
  SPEAKER_00: No.
• 21:11
  SPEAKER_01: I mean, how did you find adjusting to life again after having your stoma?
• 21:16
  SPEAKER_01: I mean, what was your recovery period like?
• 21:18
  SPEAKER_02: What was I feel like I recovered quite quickly, but I've had a lot of surgeries, so I kind of feel like my body is quite good at recovering from surgery.
• 21:26
  SPEAKER_02: It's a bit more used to it now, and I was really keen just to get going.
• 21:29
  SPEAKER_02: It was almost like a new lease of life.
• 21:31
  SPEAKER_02: I always say that my first stoma saved my life and my second stoma gave me back my life because I felt like I just lost it for a little bit towards the end.
• 21:38
  SPEAKER_02: Um so it just felt so much better to be able to actually just get on a walk and even if my bag was full enough, I can just empty it into one of the little black bags and bin it sort of thing that you can.
• 21:47
  SPEAKER_03: Do you remember your first time?
• 21:50
  SPEAKER_03: Like I I know I don't remember of emptying outside wild.
• 21:55
  SPEAKER_01: Do you have I'm having flashbacks of being stuck in traffic all the way?
• 22:00
  SPEAKER_01: Down to Bath.
• 22:01
  SPEAKER_01: So from where I live to get to Bath, should have maybe done that journey in three hours.
• 22:05
  SPEAKER_01: It was like six.
• 22:07
  SPEAKER_01: And you know, when your bag is that full in the car, but you can't empty it in the car.
• 22:11
  SPEAKER_03: Yeah, like when you pat it and it creates like music and it's like drums.
• 22:16
  SPEAKER_01: So I was literally, I sort of jumped out of the car, I'd seen a bin, and I was like, I was like, I have no choice.
• 22:21
  SPEAKER_01: I will have to empty it.
• 22:22
  SPEAKER_00: Directly into the bin.
• 22:23
  SPEAKER_00: Directly into the bin.
• 22:29
  SPEAKER_01: It was that bad.
• 22:30
  SPEAKER_01: I had no choice.
• 22:32
  SPEAKER_01: The traffic getting through, but there was no team.
• 22:36
  SPEAKER_01: No, no, but there were rats in that bin because it was had my bag offloaded, I heard the squeaking and the scamming.
• 22:43
  SPEAKER_00: And I was like, oh my god, what am I done?
• 22:47
  SPEAKER_00: And I was like, rats in that feeling things tonight.
• 22:51
  SPEAKER_00: Yeah, they're not just rats anymore.
• 22:54
  SPEAKER_02: That is disgusting.
• 22:55
  SPEAKER_02: There's so many like funny little like emptying and changing stories like since I started.
• 22:59
  SPEAKER_02: Because I would never have joked about this with my first domain.
• 23:01
  SPEAKER_02: Like things are so different now.
• 23:04
  SPEAKER_02: But like I think the first one was a similar story.
• 23:06
  SPEAKER_02: Like, I was on my way to Centre Park.
• 23:07
  SPEAKER_02: Doing on a rat.
• 23:08
  SPEAKER_02: Not quite that same thing.
• 23:11
  SPEAKER_02: But I was so I live kind of like near Glasgow when we were going to the centre parks in Penriff.
• 23:15
  SPEAKER_02: So it's only like an hour and a half drive.
• 23:17
  SPEAKER_02: It's really not that far.
• 23:18
  SPEAKER_02: But this one day that I didn't check my satin nav, it was flooded and the whole road was blocked for six hours.
• 23:23
  SPEAKER_02: So I was sat in my car, and I was between me and my boyfriend, I'm the only one that drives.
• 23:27
  SPEAKER_02: So I was like, well, you can't drive the car while I empty my bag.
• 23:29
  SPEAKER_02: So like you do, what did you do?
• 23:31
  SPEAKER_02: I just emptied it into a black bag.
• 23:32
  SPEAKER_02: I was like, sorry, but you know, I'm just gonna empty it.
• 23:35
  SPEAKER_02: And obviously, then we had to leave that in the car until we could get to Centre Fox.
• 23:38
  SPEAKER_02: But I've had loads of different changes and things like that.
• 23:41
  SPEAKER_03: Yeah.
• 23:42
  SPEAKER_02: Had a bag burst before a night out.
• 23:43
  SPEAKER_02: I was in Glasgow and I was like, hmm, well, it was all down my clothes and everything.
• 23:47
  SPEAKER_02: I was like, I'll just have to get a new outfit.
• 23:48
  SPEAKER_02: But a new outfit went out, had the best night ever.
• 23:50
  SPEAKER_02: It was great.
• 23:51
  SPEAKER_03: I remember the first time after surgery going for a walk.
• 23:55
  SPEAKER_03: Um, it was in Penarth, not far from the studios actually.
• 23:59
  SPEAKER_03: And there's like a nice big park and going through, and then there was a little like abandoned public toilet building, and I was like, oh my god, I need to empty my bag or it's gonna blow.
• 24:09
  SPEAKER_03: So I was with Jake at the time, and I was like, right, Jake, keep an eye out for mummy now.
• 24:15
  SPEAKER_03: Just just say g just say like mummy or something if you see someone coming.
• 24:20
  SPEAKER_03: And literally, I was emptying my bag, someone was coming in.
• 24:23
  SPEAKER_03: He went, It's all right, my mummy's just pooing in a bag.
• 24:27
  SPEAKER_03: That's what he said.
• 24:29
  SPEAKER_03: And and then obviously it makes them look, which they probably might not have done.
• 24:33
  SPEAKER_03: And it's another one I had was where I had to pull over.
• 24:36
  SPEAKER_03: I was on a motorway driving, it was a hard shoulder, and it was gonna burst.
• 24:40
  SPEAKER_03: Pulled over, Jake was on the side that was off the road.
• 24:45
  SPEAKER_03: I went round and I was, I was, I couldn't do it in the there wasn't enough room with the steering wheel.
• 24:49
  SPEAKER_03: I just couldn't, so I had to go over to the other side.
• 24:52
  SPEAKER_03: And I think I got out of the car or something because I thought I don't want it going everywhere in the car.
• 24:56
  SPEAKER_03: And I'd open the door so that I was concealed.
• 24:59
  SPEAKER_03: Then I needed a Wii.
• 25:01
  SPEAKER_03: So then I had a Wii on the side of the road, and then he closed the door because he was cold.
• 25:07
  SPEAKER_03: So then all the oncoming traffic saw me squatting for a Wii and emptying my bag.
• 25:12
  SPEAKER_03: So yeah, that was that was great.
• 25:14
  SPEAKER_02: Yeah.
• 25:14
  SPEAKER_02: I've had a couple of bag bursts in work, actually.
• 25:18
  SPEAKER_02: At first I was really worried about these, but actually, like I've been so lucky.
• 25:21
  SPEAKER_02: The first one that happened to me, I was like, oh, this is awful.
• 25:24
  SPEAKER_03: So you're a midwife.
• 25:25
  SPEAKER_03: We haven't shared that, have we each other?
• 25:26
  SPEAKER_02: I was lucky that I work in hospital.
• 25:28
  SPEAKER_02: Yeah.
• 25:28
  SPEAKER_02: And the showers readily available, there's towels available, and the scrubs available, and I had spare like pants and stuff in my bag.
• 25:34
  SPEAKER_02: But I was really lucky that the shift I was on I'd already um told the midwife that was in charge that I had a stoma, and one of the other girls who was my mentor, I just kind of had to message her from the bathroom.
• 25:45
  SPEAKER_02: So basically, like, because of so much so all the surgery I've had, I can't feel a leak until it's like basically running down my leg because my skin's numb.
• 25:52
  SPEAKER_02: So I basically kind of feel it kind of going downwards.
• 25:54
  SPEAKER_02: So it's too late, usually by the time I've found it, and I'm like, oh well, I'm gonna have to get changed.
• 25:59
  SPEAKER_02: So I had to like message one of my friends from the toilet, like, can you get me my bag, please?
• 26:02
  SPEAKER_02: I'm in this toilet.
• 26:03
  SPEAKER_02: She was like, Yeah, you're fine.
• 26:04
  SPEAKER_02: I was like, Yeah, my bag just burst, and then she got me towels and stuff, and I went in one of the spare labor rooms and got myself sorted.
• 26:09
  SPEAKER_02: There's actually a very funny picture of it on my Instagram because I just thought I'd just get a little picture just to show the reality of it.
• 26:16
  SPEAKER_01: Because like this is how my life is.
• 26:17
  SPEAKER_01: And I've had it, I think the worst one I've done it was it was in April, and people had been doing April Fool's tricks on the toilets, so they'd been put a load of teenage obviously got hold of cling film and decided at the train station they was going to cling film all the toilets.
• 26:34
  SPEAKER_03: You didn't empty your bag on one.
• 26:35
  SPEAKER_03: Yes.
• 26:37
  SPEAKER_01: And I was wearing a pink and white pinstripe like pair of clots, trousers, so literally where it wear it, bounced back and then kept bouncing back as my bags continue to empty.
• 26:52
  SPEAKER_01: And I literally had to walk home.
• 26:54
  SPEAKER_01: And I was like, I was like, oh my god, I just literally it's just oh great, great.
• 27:02
  SPEAKER_02: It is really hard sometimes, like when you're in public and like if a toilet's closed, like a lot of time on trains, it'll say out of order.
• 27:07
  SPEAKER_02: I'm like, well, that's not helpful.
• 27:08
  SPEAKER_02: Like I could do without being open, especially if I've gone out for a meal or something, and I'm on my way home because it's just coming through, it's coming through, it's coming through.
• 27:15
  SPEAKER_02: Yeah.
• 27:15
  SPEAKER_02: Um, but actually, really funny on the way here, I got the sleeper overnight because I was in work yesterday.
• 27:20
  SPEAKER_02: Um, and the toilet was out of order in my room.
• 27:23
  SPEAKER_02: So I didn't have a toilet, so I was very lucky.
• 27:25
  SPEAKER_02: It was out of order in your room.
• 27:26
  SPEAKER_02: Yeah, the water wouldn't flush.
• 27:28
  SPEAKER_02: So it's the one time I've been really lucky to have a stomach because I could just change my bag instead of emptying it.
• 27:34
  SPEAKER_00: Oh.
• 27:35
  SPEAKER_02: But I'm quite glad I didn't empty it into the toilet before finding out that it didn't flush, because that wouldn't have been a very fun discussion at the end of my journey.
• 27:42
  SPEAKER_03: The worst thing is when you empty your bag into a toilet and it's a lot, and then the flush doesn't work in it, and you're like, you know, you're waiting for it, like, yeah, you're like, what do I do?
• 27:50
  SPEAKER_03: What do I do?
• 27:51
  SPEAKER_01: Oh gosh.
• 27:54
  SPEAKER_01: Oh, it's just well, it sounds like you've adjusted to life absolutely fine.
• 27:58
  SPEAKER_01: So that's all talking about the bad moments of bag empty.
• 28:02
  SPEAKER_03: Yeah, like you've got a good sense of humour, and you've yeah, and and I, you know, you you're active on Instagram and you've got a profile on there.
• 28:09
  SPEAKER_03: Um I mean, with your job as a midwife, I suppose it's quite a unique perspective because you've you're in them in the NHS on both sides of the coin.
• 28:18
  SPEAKER_03: So I know we have people sitting here who rave about stuff and then other people that are uh not so ravy.
• 28:25
  SPEAKER_03: Um, but I mean it must be quite how do you feel about your experience with the NHS as a patient, then actually having it as an occupation?
• 28:34
  SPEAKER_02: So I've I think I have like I've got a bit of PTSD from like all the times I've been in hospital and all the procedures I've gone under because sometimes in my childhood, like for example, I was held down for a scoop into my stoma as I think I must have been about like six or seven years old.
• 28:50
  SPEAKER_02: Um so like from that I just I always remember that moment that I was almost forced, well I was forced into doing that.
• 28:56
  SPEAKER_02: So I have a lot of PTSD as a patient, but then working in the NHS, it feels different.
• 29:01
  SPEAKER_02: Some moments they get me, like some smells I can sort of smell.
• 29:04
  SPEAKER_02: You get triggered then.
• 29:05
  SPEAKER_02: Yeah, like see when you go under an anesthesia, like there's a particular smell and I know it and I can smell it, and I'll walk up the corridor and I'll go, I can smell that, and no one else can.
• 29:13
  SPEAKER_02: And I don't know if that's just like me just being a bit oversensory about it all.
• 29:16
  SPEAKER_02: Um it's trauma, isn't it?
• 29:19
  SPEAKER_02: You've lived through that trauma thing.
• 29:21
  SPEAKER_02: Or if I see someone going through something really quite traumatic or a sick baby, I can be like, you know, that was me, like, and I couldn't prevent that this time.
• 29:29
  SPEAKER_02: Um so it can really, really hurt like if I see a child that I've looked after as unwell.
• 29:34
  SPEAKER_02: Um but generally like I really enjoyed that I can care for women and babies and families and hopefully give them a good experience, especially if someone comes in with a medical condition.
• 29:44
  SPEAKER_02: We actually had a lady in with a stoma quite recently, so I was really excited to just even see someone else with a stoma coming in to have a baby.
• 29:50
  SPEAKER_02: Do you see that then?
• 29:51
  SPEAKER_02: It's the first one I've seen.
• 29:53
  SPEAKER_02: In how long?
• 29:54
  SPEAKER_02: I've well, I trained there for three years, and then this is me a year and a half into the job.
• 29:58
  SPEAKER_02: So I've had one girl who had a reversal and came in to have a baby, and then I've seen my first person who've had who's had a stoma have a baby.
• 30:05
  SPEAKER_03: So are all these women?
• 30:07
  SPEAKER_02: I want to know where they are, because I want to look after them.
• 30:09
  SPEAKER_02: They're still gonna come to a birth or C-section.
• 30:11
  SPEAKER_02: They were both C-sections.
• 30:12
  SPEAKER_02: Yeah.
• 30:12
  SPEAKER_02: Both of them, both planned to.
• 30:14
  SPEAKER_03: Can I have my baby with you then?
• 30:15
  SPEAKER_03: Because I feel like you'd get me.
• 30:17
  SPEAKER_03: I would absolutely look after them.
• 30:18
  SPEAKER_03: Can you travel down to Cardiff for me?
• 30:20
  SPEAKER_03: Yeah, wicked.
• 30:21
  SPEAKER_01: I'd be like, move aside from the city.
• 30:22
  SPEAKER_01: I don't get to Wales much, so I'll come along, that's fine.
• 30:25
  SPEAKER_01: I remember you briefly saying, obviously, in the discussion that we were having before the podcast, that you haven't had your Barbie butt surgery yet.
• 30:31
  SPEAKER_01: Was there any reason as to why they didn't put you through the Barbie butt surgery when they gave you the next the your second stoma?
• 30:39
  SPEAKER_02: So the consultant that gave me my stoma wouldn't give it to me in case I wanted a reversal, which was quite funny because I was very adamant that I didn't want a reversal ever again.
• 30:47
  SPEAKER_02: I don't I was like that's it.
• 30:51
  SPEAKER_02: And you're an adult and you kept saying you'll regret this, you'll regret this, and I was like, I won't have to.
• 30:55
  SPEAKER_02: So that's not your decision.
• 30:56
  SPEAKER_02: Exactly.
• 30:58
  SPEAKER_02: I've been crying about it for three years, like I'm not gonna regret this, and I don't regret it.
• 31:02
  SPEAKER_02: Um but like in some ways I'm glad I didn't get them both at the same time anyway, because I can't imagine being sore here and down there at the same time.
• 31:08
  SPEAKER_02: So it's quite nice I've had this time just to get used to this.
• 31:11
  SPEAKER_02: But um I spoke to my new consultant in Scotland and he said that it can actually reduce your fertility.
• 31:16
  SPEAKER_02: So I'm quite keen to sort of have my babies and stuff first and then get it done in the future.
• 31:21
  SPEAKER_03: Yeah.
• 31:21
  SPEAKER_02: Because I don't have like active disease or anything in my rectum, it's just that I want it closed over because I get quite a bit of mucus and it can give me back pain, especially when I'm on my period as well.
• 31:30
  SPEAKER_02: It can get quite sore.
• 31:31
  SPEAKER_03: How did your talking of periods, did they change for you after significant surgeries?
• 31:39
  SPEAKER_02: Well, my first period came after my reversal.
• 31:42
  SPEAKER_02: So I was in so basically when you get your pre-op check, and I was 13 years old, I'd never had a period, and they were asking, like, have you ever had a period?
• 31:48
  SPEAKER_02: And I was like, No, not that I'm aware of anyway, because you have so much going on, I don't think I'd notice if there was water coming out of me, to be honest.
• 31:54
  SPEAKER_02: Yeah, I guess.
• 31:54
  SPEAKER_02: Um so I think obviously from all the rummaging, they must have knocked it, and I did have like a really small period, but it must have been my first one, and I had it a bit irregular that year.
• 32:03
  SPEAKER_02: Um but I know I I feel like whenever I was on my period with my reversal, it was horrendous.
• 32:08
  SPEAKER_02: Like it would make me go to the toilet more.
• 32:09
  SPEAKER_02: I could feel just like the oils, like just like sitting there, like just this burning sensation, and I just needed the toilet so so much more.
• 32:18
  SPEAKER_02: Um and then since my surgery, again, I ended up on my period after my um stoma coming back, which again they must have just knocked it or something, and it'll cause it to bleed.
• 32:27
  SPEAKER_02: But they've been okay.
• 32:28
  SPEAKER_02: Like, I sometimes get a sore stoma from like almost like the contractions, because all your abdomen contracts when you get in pain.
• 32:35
  SPEAKER_02: But generally they've been okay.
• 32:36
  SPEAKER_02: They've been alright.
• 32:37
  SPEAKER_02: And I was using like hormonal contraception to help them periods as well, because that they can be quite heavy.
• 32:42
  SPEAKER_02: But I've recently come off that and I actually think it's a lot better.
• 32:45
  SPEAKER_03: Were you I mean, were you when you went on that hormonal contraception, did they discuss about the possibility of not absorbing it or was that complicated?
• 32:54
  SPEAKER_02: For that reason, because I knew that as I'd had the pill beforehand, and that was just like I didn't feel like actually it would have worked as effectively just because of the absorption rate.
• 33:03
  SPEAKER_02: And I definitely now that I've got a stoma, would not use So you realised that yourself, you weren't formerly Totsy.
• 33:09
  SPEAKER_03: That I mean you're lucky.
• 33:11
  SPEAKER_02: The nurse was very good though that looked after me because as soon as I mentioned it, she was like, Oh, actually, yeah, let's consider this.
• 33:15
  SPEAKER_02: And I've always had bad acne, which is really common with short bowel syndrome as well.
• 33:19
  SPEAKER_02: And she was trying to find a way that we could resolve the periods and the acne and the fact it had short bowel syndrome, so I feel like I'd always have to go for a more permanent option than taking a pill, so like a coil or an impact.
• 33:29
  SPEAKER_01: Tell us what might be wonder because I if I think back to all my surgeries, especially my my my most recent ones, I've always ended up on a period after having surgery.
• 33:37
  SPEAKER_02: It's because they knock it and it causes it to bleed.
• 33:39
  SPEAKER_01: Yeah, I know, but I think part of it's the idylysis because I have scar tissue removed.
• 33:42
  SPEAKER_01: I've got I've got enteral metrosis as well as the Crohn's, so I have scar tissue removed every time I have surgery.
• 33:48
  SPEAKER_01: Yeah.
• 33:49
  SPEAKER_03: Just um yeah, that's just I'm I'm dreading the one after this baby.
• 33:55
  SPEAKER_01: Oh well, if there's any constellation of going through chemical menopause, so I had my last period and now I'm just gonna be spotting for however long.
• 34:03
  SPEAKER_02: Yeah, that could be.
• 34:05
  SPEAKER_02: Yes.
• 34:06
  SPEAKER_02: This is a thing I find that people don't think of as well.
• 34:09
  SPEAKER_02: Like all of my normal friends, like, yes, they have periods and they have childbirth and they go to the toilet in the morning, they get dressed in the morning, but actually then we have a bag burst in the night.
• 34:19
  SPEAKER_02: We have to do the laundry when we wake up.
• 34:21
  SPEAKER_02: We've gotta wash our uniforms because my bag's burst.
• 34:24
  SPEAKER_02: I'm on my period, but it's much more sore because my tummy's hurting and I'm getting blood pouring out of me.
• 34:29
  SPEAKER_02: Like all these things that we do, we have a little bit extra because we have to deal with the bags.
• 34:34
  SPEAKER_01: I was gonna say, so even though all the surgery you have, you've got nerve damage, I've got to say I can't feel anything on on my stomach.
• 34:39
  SPEAKER_01: Yeah, you can feel it when your stomach has burnt.
• 34:42
  SPEAKER_02: That's crazy, isn't it?
• 34:44
  SPEAKER_02: It's like when it contracts to like see like when my abdomen contracts onto it.
• 34:47
  SPEAKER_02: So I can feel like a bit of stinging skin, but nothing as bad as I thought it would have been.
• 34:51
  SPEAKER_02: But I definitely have numbness to my skin, like just in this quarter, just because I've got a scar that goes downwards and then my baby scar goes like from here to here.
• 34:58
  SPEAKER_02: So like this quarter is just kind of numb.
• 35:01
  SPEAKER_03: Like you can pinch it and I don't feel it.
• 35:02
  SPEAKER_03: That's something I've never asked Jake if he feels numb anyway.
• 35:06
  SPEAKER_03: When I go home, I'm gonna just poke that belly and go, can you feel that?
• 35:09
  SPEAKER_01: It's like so obviously where I've had stomas on both sides that I've got nerve damage all across the front.
• 35:16
  SPEAKER_01: So uh when you go for the zolodex injections, the needle is absolutely huge.
• 35:23
  SPEAKER_01: I'm sat there, she went, Are you okay to have it done?
• 35:26
  SPEAKER_01: I'm like, yeah, fine.
• 35:27
  SPEAKER_01: She went, You don't even flinch when I put the needle in.
• 35:29
  SPEAKER_01: I went, that's because I can't feel it.
• 35:32
  unknown: Oh my gosh.
• 35:33
  SPEAKER_03: I mean, what advice would you give to parents with a child with a stoma?
• 35:39
  SPEAKER_03: Is there anything you know you think back and think, oh my parents smashed that, like that that was really helpful or that was really good, or even what medical professionals did for you or said you that helped you through all this?
• 35:54
  SPEAKER_02: I think it's really hard because obviously every child's situation's different.
• 35:57
  SPEAKER_02: It can be really scary, like either having a baby that's having to go and have stomach surgery, or like having a baby like yourself, like you knew you had a genetic condition.
• 36:06
  SPEAKER_02: Did you know it before you had your child?
• 36:07
  SPEAKER_02: Yeah, so like you knew you had your genetic condition, there's a chance that your child could.
• 36:11
  SPEAKER_02: So like it can be really difficult because everyone's got it for a different reason.
• 36:14
  SPEAKER_02: But once you've got over that kind of worry and panic, because you'll always be worrying, but that initial kind of being scared of this new thing that's not the ordinary, you know, not the ordinary nappy changes, just to embrace like this new life for your child.
• 36:30
  SPEAKER_02: Because I think for myself, because I didn't know many children that had it, I was always just felt like I was a bit of an alien.
• 36:35
  SPEAKER_02: Like I actually said that I was an alien because I was just like, no one else is like this, no one has this thing sticking out of them.
• 36:41
  SPEAKER_02: Um and my parents had to just adapt a lot because there wasn't the same kind of I guess guidelines as there is now.
• 36:47
  SPEAKER_02: Well, like I don't know if there even is any guidelines, but we have no support.
• 36:52
  SPEAKER_03: Like there's no, you know, like for us, we've got social media, we can talk to our friends, our family.
• 36:56
  SPEAKER_03: That I know for Jake he's confident with it as much as you can be for a seven-year-old, but I am very aware that the teenage years are fast approaching, and I am anxious in how we're gonna navigate that.
• 37:09
  SPEAKER_03: Um, but then talking to someone like yourself, you sharing your story, you know, that's that's only gonna help people in my position because you are you do feel like you're going into it blind, and you, you know, I to a degree it's helpful that I have one too, so I can relate so much.
• 37:26
  SPEAKER_03: But you children don't tend to vocalise their feelings, do they?
• 37:31
  SPEAKER_03: They don't tend to, you know, like if we've had crap time with our health or something, we'll be like meh meh meh meh meh meh.
• 37:36
  SPEAKER_03: Whereas if Jake's feeling similar things to what you shared today, he might not want to share it with me, or it'll come out at bedtime two days after, or you know, it's so it's much more difficult.
• 37:48
  SPEAKER_03: But like there's no support groups anywhere near where I live.
• 37:52
  SPEAKER_03: There's the pediatric care he gets is brilliant, and you can have these chats with the stoma nurses and that, but ultimately for him uh being able to connect with other kids so he doesn't feel like an alien, that doesn't exist, and that's a shame because I really do think that would help children in accepting it and navigating childhood because it I mean it must have felt lonely, it must have felt really isolated.
• 38:16
  SPEAKER_02: I was really lucky that um like my mum was really, really proactive in like trying to just at least get me to like meet people and stuff, and um there was a group actually set up by a mum of a girl quite a similar age to me.
• 38:29
  SPEAKER_02: It was called Diversions Family Support Network.
• 38:31
  SPEAKER_02: So that was in the northwest of England, and we like would meet up and we'd go and like ride bikes together, or we'd go away for the weekend and um you'd do archery, like we just did all these active things, and it meant it like once a month or once kind of like a season, you'd meet all these people, and I'm still friends with quite a lot of them, like especially like just on social media, even just and I can follow the stories.
• 38:51
  SPEAKER_02: Um so as someone who was a child of a stoma, um I'd say just don't take anything personally because I blamed my parents for everything.
• 38:58
  SPEAKER_02: And now as an adult, I feel so bad because I know my pets I know it wasn't my parents' fault in any way, shape, or form.
• 39:04
  SPEAKER_02: Like it's just they're your only place to lash out.
• 39:07
  SPEAKER_02: You're not gonna lash out of school, you're not gonna lash out to your friends.
• 39:09
  SPEAKER_02: Like they're the only ones that can see that you go in this day in, day out, and it's the only people that you can almost put your blame on because you don't know who else to blame.
• 39:18
  SPEAKER_03: But that's where I think there's a ma there's a massive issue with like psychological intervention for children with stomas.
• 39:24
  SPEAKER_03: It doesn't exist in Wales.
• 39:26
  SPEAKER_03: I know that much, I'm not sure about England.
• 39:28
  SPEAKER_03: It doesn't.
• 39:29
  SPEAKER_03: I mean, it doesn't for adults really, does it, let alone kids?
• 39:32
  SPEAKER_03: And if if you're not given the tools in how to process those emotions, you are gonna do that, aren't you?
• 39:38
  SPEAKER_03: Because how what are you, you know, you like we were saying in the last episode when we were talking to Chris, who's saying how you you take it out on the people you love and care about.
• 39:46
  SPEAKER_03: And as a child, your parents are everything, aren't they?
• 39:49
  SPEAKER_03: They're your life.
• 39:50
  SPEAKER_02: They're the only people that you can think to actually say these things to, because you're not gonna tell your friends that your skin's sore.
• 39:54
  SPEAKER_02: Well, and actually being sore is one of the main reasons people get angry as well.
• 39:59
  SPEAKER_02: Yeah, because you could just feel that too much brain.
• 40:01
  SPEAKER_02: It's the only thing that will happen when you're sore.
• 40:03
  SPEAKER_02: But when I was a child, actually, I got a bit of counselling, but it's not like I think what it is today, and all they really came to was anger management.
• 40:10
  SPEAKER_02: But I wasn't angry, like I didn't need anger management.
• 40:14
  SPEAKER_02: Like I needed help because I wasn't the same as everyone else.
• 40:18
  SPEAKER_02: Like I was so different, but the only thing they could come up with was that I was just an angry, badly behaved child.
• 40:23
  SPEAKER_01: I mean, you see, the thing is because post-COVID, the amount of children that obviously weren't socialising with their peers and not being in school and then going back to school, and then being closed off again and not seeing people, especially those without siblings.
• 40:39
  SPEAKER_01: A lot of them in secondary school now that have obviously were at the back end of primary school, going into secondary school, are hitting year nine and year ten, and they're still getting counselling post-COVID in secondary schools because they've developed anxiety disorders or uh things like that.
• 40:59
  SPEAKER_01: But you don't they don't get the help in their younger years, it's crazy.
• 41:03
  SPEAKER_03: No, and and if they put that help in when they're little, then you know they they wouldn't need it as they get older, and then you hit puberty, and that's scary enough and hard to deal with.
• 41:14
  SPEAKER_03: And I know like when you know my little one was going through some things to do with his like w with well, his medical things, and I was trying to reach the s school and go, look, you know, he really needs some help.
• 41:25
  SPEAKER_03: Have you got anyone to talk to in school?
• 41:27
  SPEAKER_03: And it was post-COVID, and they said, well, you know, we're focusing on your year sixes at the moment because they've been affected the most because of the pandemic.
• 41:33
  SPEAKER_03: I went, Well, I get they need help, but so does your child.
• 41:36
  SPEAKER_03: So does mine.
• 41:38
  SPEAKER_03: And the thing is they're probably looking at it like, but it's medical, why isn't the hospital or the GP helping?
• 41:43
  SPEAKER_03: But they weren't either.
• 41:44
  SPEAKER_03: And it it seems to be it doesn't matter where you try and go to for help, it isn't there.
• 41:49
  SPEAKER_02: I feel like you get a lot of us versus them as well.
• 41:51
  SPEAKER_02: Like you'll be so I struggled with my mental health a lot in the past year, just with the adaptation to this kind of new way of life.
• 41:57
  SPEAKER_02: As much as I love my stoma, I'm still very different, I still have a lot of challenges, and I think that could have been nipped in the bud at the age of seven.
• 42:03
  SPEAKER_02: Do you know that I just I just feel like that whole psychological intervention should have taken place and I probably wouldn't have hit the point I got to.
• 42:11
  SPEAKER_02: And even as an adult, it's really hard to get mental health help.
• 42:14
  SPEAKER_01: Yeah, and but that's the you know, like being Yeah, but to be fair, they do have sil the likes of Silver Cloud or something similar to that in different areas.
• 42:24
  SPEAKER_01: So you're at least getting some help and you're getting assessed, and that tends to be a lot quicker.
• 42:30
  SPEAKER_01: So if they're assessing you, they'll give you CBT for a certain amount for a certain period of time, and you're then assessed, and then if they feel you need additional further help, they can then arrange the further additional psychotherapy or it's just a shame this it's not for pediatric care, it's just mind-blowing.
• 42:48
  SPEAKER_03: But it could just be started, and that's uh yeah, and then as a as the parent, you feel like you're trying to advocate for them with their physical health, you're trying to support them with their mental health, and it it whilst doing like we were saying the other the other episode, you know, whilst trying to juggle your family, juggle a job, you know, all that stuff, and it's something's gotta give, and it's yeah, and you actually just want to enjoy life as well, you want to go on days out, holidays, like you want to actually enjoy them.
• 43:15
  SPEAKER_02: Vampoon on a rat.
• 43:19
  SPEAKER_02: But um the one thing I would say about now as well, I probably should have mentioned this earlier on, but with having a stoma when I was a child, like they didn't have a lot of the stuff they have now, so like the bags were all skin coloured, whereas now I wear a black bag.
• 43:33
  SPEAKER_02: And again, I'm starting to think, like, oh, I wonder if there was black bags then.
• 43:36
  SPEAKER_02: Maybe I'd have felt more confident to show people that I had a bag instead of like a skin-coloured one, which I sometimes just feel like a black one.
• 43:42
  SPEAKER_02: I don't know, it just feels nicer to me.
• 43:46
  SPEAKER_02: Um, and like social media wasn't the same back then, I never would have posted that I had a stoma.
• 43:51
  SPEAKER_01: There wasn't any social media.
• 43:53
  SPEAKER_01: It's only really been the last decade that social media has really come along.
• 43:57
  SPEAKER_02: As soon as I got my surgery, I was like, by the way, guys, I've got a stoma back, whereas I'd have never done that years ago.
• 44:02
  SPEAKER_02: So I think things have just moved along.
• 44:04
  SPEAKER_02: I mean, yeah.
• 44:05
  SPEAKER_01: What advice would you give someone if they were struggling to accept their stoma?
• 44:10
  SPEAKER_01: What would you say?
• 44:11
  SPEAKER_02: I think it's okay to struggle to accept your stoma.
• 44:14
  SPEAKER_02: I have been in that crew of people that do not want to hate it, couldn't think of anything worse.
• 44:20
  SPEAKER_02: Um, and it just comes, it it does come.
• 44:22
  SPEAKER_02: For some people, it doesn't, and a reversal is the option for them, and it might work and it's perfect, their life can go on.
• 44:28
  SPEAKER_02: But for some people, a stoma is just for the rest of their life, and it will come, you will become more confident, speak to people.
• 44:35
  SPEAKER_02: Um, I actually noticed the lack of support and help to start a support group, and actually now it's becoming Scotland wide.
• 44:41
  SPEAKER_02: So we've grown from having one little online group to now having about six meetups all at different times and days of the week, and we just drink tea, talk about life, talk about our Christmas trees, our pets, like just actually to talk to someone the same as yourself who actually gets it is different to talking to maybe like a family member who sees you going through it.
• 45:00
  SPEAKER_02: So it's nice to actually talk to someone, but just take your time.
• 45:04
  SPEAKER_01: Do you think being do you think being a teenager is harder and would struggle more to accept a zoner?
• 45:13
  SPEAKER_02: I I think when I was a teenager, probably, but I think now that social media's improving, it might have got a little bit better.
• 45:22
  SPEAKER_02: Um I think it can be hard because of all the other things that you're going through at life, but I can see how it's improved now with advancements through like the coloured bags and social media.
• 45:30
  SPEAKER_02: TikTok's had a huge influence on having a stoma.
• 45:34
  SPEAKER_02: Um I can see how it's hard though, because you've got so much else to deal with in your life.
• 45:37
  SPEAKER_02: You've got your periods, hormonal changes, school.
• 45:39
  SPEAKER_02: And you hate the world, you hate everything.
• 45:41
  SPEAKER_02: Exactly, you hate everything anyway, so you may as well hate your bag again.
• 45:43
  SPEAKER_03: Yeah, yeah, yeah, yeah.
• 45:44
  SPEAKER_03: What's a bag on top of it all?
• 45:46
  SPEAKER_03: Um, but no, thank you so much for travelling all this way to come and see us.
• 45:50
  SPEAKER_03: We really appreciate it.
• 45:52
  SPEAKER_03: Um, and it's so lovely to see your perspective as being a child of a stoma through to the wonderful woman you are today.
• 45:59
  SPEAKER_03: Thank you.
• 46:00
  SPEAKER_03: So we hope you've enjoyed listening to Beyond the Pouch today and watching if you caught us on YouTube, and we hope you gain something from this conversation.
• 46:07
  SPEAKER_03: And thank you so much.
• 46:09
  SPEAKER_03: Thank you for having me.