Latest / Beyond the Pouch / E7: Summer on Barbie Butt Surgery, Relationships & Body Confidence with a Stoma

Transcript

E7: Summer on Barbie Butt Surgery, Relationships & Body Confidence with a Stoma · Beyond the Pouch

• 0:00
  SPEAKER_01: Hey and welcome to Beyond the Pouch, a podcast series brought to you by Pelican Respond and Ekin, where your hosts, Rachel Louise, dive into the world of Ostomy through open and honest conversations, including the lives of many inspirational ostomates, so you can get to know them beyond the pouch.
• 0:20
  SPEAKER_02: Welcome back for another episode of Beyond the Pouch.
• 0:22
  SPEAKER_02: If you haven't caught our other episodes, head over to Spotify or YouTube to have a listen and a watch.
• 0:27
  SPEAKER_02: Today we are very happy to welcome a friend of ours, Summer, who's also an ambassador with us, who has been through so much in your not so long life.
• 0:37
  SPEAKER_02: How are we?
• 0:38
  SPEAKER_02: And she's just absolutely gorgeous.
• 0:42
  SPEAKER_02: How old are you?
• 0:43
  SPEAKER_02: Twin.
• 0:44
  SPEAKER_01: Oh.
• 0:45
  SPEAKER_01: Oh, you're such a baby.
• 0:47
  SPEAKER_02: No, you're not.
• 0:48
  SPEAKER_02: You're a strong independent woman.
• 0:49
  SPEAKER_02: Cut that out.
• 0:51
  SPEAKER_02: Okay.
• 0:54
  SPEAKER_02: No, you you've you've been through a hell of a lot and you are very positive, very humble.
• 1:00
  SPEAKER_02: You, you know, talk about hidden illnesses.
• 1:03
  SPEAKER_02: You are such a pure example of the fact that you would not know that anything is going on.
• 1:09
  SPEAKER_02: So how have you been lately?
• 1:10
  SPEAKER_02: How's your health?
• 1:12
  SPEAKER_00: Yeah, good.
• 1:13
  SPEAKER_00: Well, I had since since the bivarite surgery last year, I've been absolutely fine.
• 1:18
  SPEAKER_00: No, no issues, no problems, back to back to being healthy, which is great.
• 1:23
  SPEAKER_02: Oh, and how so how old were you when you first started having symptoms?
• 1:29
  SPEAKER_02: How how was your journey panned out?
• 1:32
  SPEAKER_00: So I was about 19, 18 when I when it first started.
• 1:37
  SPEAKER_00: Um I was at university in my first year.
• 1:41
  SPEAKER_00: Um, so it started in like the February when I was 18.
• 1:45
  SPEAKER_00: Um, didn't get diagnosed until June, so just after my 19th birthday, and it just sort of spiraled quite quickly from there.
• 1:55
  SPEAKER_00: So I had obviously, as you know, many tests done, um, various trips to AE in that period, just couldn't work out what was wrong with me.
• 2:05
  SPEAKER_00: Um, I lost a lot of weight.
• 2:07
  SPEAKER_00: I was just going to the toilet probably like 30 times a day, not sleeping, not eating, um, just overall very unwell.
• 2:17
  SPEAKER_00: And as soon as they'd done the colonoscopy for the first time, they were like, Yeah, it's very obvious that you've got colitis and it's in your like it's in your whole large bowel.
• 2:27
  SPEAKER_00: So I sort of went on steroids straight away, and they just they just wouldn't work.
• 2:33
  SPEAKER_00: They just it just wasn't a high enough dosage.
• 2:35
  SPEAKER_00: So I ended up being admitted in onto sort of IV steroids, and that was probably like midsummer.
• 2:42
  SPEAKER_00: Um, and they wouldn't let me go home unless I had one of the um what they called autoimmune um injections.
• 2:51
  SPEAKER_00: So I started that, had that in hospital, got all of the funding, which obviously is quite difficult to get, and left hospital on that.
• 2:59
  SPEAKER_00: Um, thought I was sort of doing okay, went back to uni, um, and then it sort of went from there.
• 3:05
  SPEAKER_00: But that's probably like the start, so like the initial sort of you know, few months.
• 3:10
  SPEAKER_00: Um yeah.
• 3:12
  SPEAKER_01: How did you find the infliximab?
• 3:15
  SPEAKER_01: Because if people don't realise that it's when it gets to the point of having to have your immune system suppressed because your immune system is basically fighting your body, I don't think they understand obviously the risks that there are for us to one take those injections and two for you, part of this was during COVID as well.
• 3:35
  SPEAKER_00: Yeah, so once I had these injections, I then moved on to inflictomag, where you obviously have to have it in hospital for the day infusions.
• 3:44
  SPEAKER_00: Um, it started just before COVID.
• 3:47
  SPEAKER_00: I remember being in for a day infusion, um, and all these nurses were like rushing into the room next to me in full hazmat, um, you know, head to OPE.
• 3:56
  SPEAKER_00: And I remember saying to my dad, that person's definitely got COVID.
• 4:00
  SPEAKER_00: And this was like pre-COVID lockdown.
• 4:05
  SPEAKER_00: A few weeks later, the day therapies got moved to the private hospital because they said they couldn't have people having, you know, immune suppressance right next to the COVID ward.
• 4:16
  SPEAKER_00: Um, so it it was very interesting, it's very interesting time.
• 4:20
  SPEAKER_00: It was a bit of a bit of a novelty.
• 4:23
  SPEAKER_00: It was, you know, it was a day out to go to the hospital and have the um have the treatments, but I remember being just really anxious, um, especially when lockdown first happened, because you know, like you say, you haven't got you haven't got an immune system.
• 4:36
  SPEAKER_00: There's this big scary thing about, and you just don't know how you're gonna react to it.
• 4:41
  SPEAKER_01: How did you find that with COVID and university and obviously being immunocompromised?
• 4:46
  SPEAKER_01: Did you feel that you couldn't do anything and that you were being isolated and staying away from people because you didn't want to because we didn't know what COVID was at the time.
• 4:55
  SPEAKER_01: It was this big, massive, scary thing.
• 4:57
  SPEAKER_00: Yeah, so um going back a bit, I actually moved back from uni in uh the following, so like 2019 again, like the November, um sort of pre-tlockdown the following year, because it was sort of start of my second year and I just got so ill.
• 5:15
  SPEAKER_00: Um I wasn't getting the support I needed up in um, I was up in Newcastle, wasn't getting the support I needed up there from the hospital.
• 5:23
  SPEAKER_00: So I ended up just having to come home because you know I couldn't I couldn't do my degree with how ill I was.
• 5:29
  SPEAKER_00: Um that was the first time they actually said to me about stoma, and I just refused.
• 5:34
  SPEAKER_00: I said I'm not having that.
• 5:36
  SPEAKER_00: I said I don't want to have that so soon, you know, I haven't tried much.
• 5:40
  SPEAKER_00: Um, and I was very anti-it to begin with.
• 5:43
  SPEAKER_00: Um so that sort of happened, you know, pre that.
• 5:46
  SPEAKER_00: So, you know, when lockdown did come, I was on a bit of a gap here, um, just to obviously try and you know recover and you know improve my health.
• 5:56
  SPEAKER_01: I mean, how did you find you you said obviously you refused to have a stoma, I'm not having that.
• 6:04
  SPEAKER_01: What were your reasons for at the time for saying no to that, even though we now know that you've you've had the surgery?
• 6:12
  SPEAKER_01: Why was you so adamantly against it at that time?
• 6:16
  SPEAKER_00: So at the time I just felt like they were almost cheating me in a way.
• 6:21
  SPEAKER_00: Um, I felt that they were doing it to, you know, to shut me up, to, you know, stop giving me the treatments because um I don't know how many of you guys had, but I found it really hard to get funding for the different biological treatments.
• 6:36
  SPEAKER_01: Which is always difficult.
• 6:38
  SPEAKER_00: Yeah, so I found it really difficult to get the funding in the first place because they are a very expensive drug, but it's the only thing they can really give you when you've got, you know, really severe colitis or Crohn's.
• 6:50
  SPEAKER_00: So I just felt like I hadn't tried enough medical options.
• 6:53
  SPEAKER_00: I was just thinking, you know, what if they find a cure in the next year?
• 6:57
  SPEAKER_00: You know, what if something changes and you know something comes about and you know I'd missed out on that?
• 7:03
  SPEAKER_00: I was just very adamant.
• 7:05
  SPEAKER_00: I needed some more time to try some other things.
• 7:08
  SPEAKER_01: Was you adamant though, because of your pre-conception of what a stoma was?
• 7:15
  SPEAKER_00: Yeah, that definitely that definitely played a part in it.
• 7:18
  SPEAKER_00: At this point, I didn't know that you know, people do what we do, and you're ambassadors for companies and you know, spread awareness, and I didn't know that whole Instagram scene was even a thing.
• 7:30
  SPEAKER_00: Um, I just didn't want to be the only person my age with a stoma, and you know, because because that let's be honest, the stigma is only old people have stomas.
• 7:39
  SPEAKER_02: Yeah, and I suppose we even on social media, there aren't many people as young as yourself on there.
• 7:46
  SPEAKER_02: You know, you're you're busy living your lives, you're you know, not many people your age have started having families yet, and you're you know, you're out there and you're maybe you're doing degrees and you're doing this, that.
• 7:58
  SPEAKER_02: You don't really see a lot of people in their late teens putting themselves out there, do you?
• 8:02
  SPEAKER_01: It's the evolution of social media.
• 8:04
  SPEAKER_01: I mean, Summer's now 23.
• 8:06
  SPEAKER_01: I was 23 when I had my first stoma, which was back pre Facebook had only been about for a year, not even a year after when I when I had my stoma surgery.
• 8:17
  SPEAKER_01: So it's it's difficult to think that even with the evolution of social media, that unless you actually go looking for it, unless you know what you are looking for, or in the field of doing what we do, it can feel very isolating.
• 8:34
  SPEAKER_01: And I mean, what made you decide to have the surgery if you were so adamantly against it the first time round?
• 8:42
  SPEAKER_00: So basically, what happened?
• 8:44
  SPEAKER_00: I had the inflixumab for about a year.
• 8:46
  SPEAKER_00: It worked for probably about six months.
• 8:48
  SPEAKER_00: It's probably the only six months I had actually in remission during that time period.
• 8:53
  SPEAKER_00: Post that I then had a year, the funding stops after a year, and they wouldn't then fund it again.
• 9:00
  SPEAKER_00: And I'd basically developed antibodies against it, but they couldn't give it anyway.
• 9:05
  SPEAKER_01: Oh did did they restart the infusion before they found out you had the antibodies?
• 9:11
  SPEAKER_01: Because this is a common thing that happens with infliximab, because infleximab over all of the biosimilars or the immunosuppressants that they treat IBD with, infliximab is meant to be the miracle drug for most people to try and avoid having the surgery.
• 9:31
  SPEAKER_01: But the problem that you've got to treat IBD, you have to stay on those immunosuppressants.
• 9:38
  SPEAKER_01: And if they stop them, you're then at the risk of like someone on myself with developing antibodies, and they didn't know until I had just anaphylactic shock as the infusion was going through.
• 9:50
  SPEAKER_01: So did they test you for the antibodies prior to trying to restart, or did they restart, found out you had the antibodies, and were like, oh no.
• 9:58
  SPEAKER_00: No, so they had to they wanted to obviously apply for funding again, and during that process, part of the part of the process was to be tested for antibodies.
• 10:09
  SPEAKER_00: Um, and you know, it eventually basically stopped working, came off it, and you know, I couldn't go back on it.
• 10:16
  SPEAKER_00: So they then said to me, let like let's be honest, you've got one more option now, you've got one more choice before you need to have the surgery to have as many biologicals as I did, you know, in such a short period of time.
• 10:27
  SPEAKER_00: They said, This is really your last hope now.
• 10:30
  SPEAKER_00: Um, and that that shocked me, uh upset me as well to to basically be told you've got three up three choices.
• 10:37
  SPEAKER_00: If none of these work, then we can't help you anymore.
• 10:41
  SPEAKER_01: Was that the entovio or was that the Humira, the last one that they tried you on?
• 10:46
  SPEAKER_00: The last one is the I can't think of the name that it's probably if it's the adilema, was it the actual gray syringe?
• 10:55
  SPEAKER_00: No, it's the actual you have to learn to you know take it out of the sort of container.
• 10:59
  SPEAKER_00: It's the it's the proper like needle syringe, it's not the epi pen one.
• 11:03
  SPEAKER_00: I've had that.
• 11:05
  SPEAKER_00: I think that's it, yeah.
• 11:07
  SPEAKER_00: That's what I'm on.
• 11:08
  SPEAKER_00: Yeah, so I tried that, um, and they basically said like your the likelihood of this working is pretty low.
• 11:16
  SPEAKER_00: Give it a go.
• 11:18
  SPEAKER_00: So I did, started it, and I was like, I'm I'm healthy, I'm better, I'm you know, I'm feeling great.
• 11:25
  SPEAKER_00: Um, and I had to do obviously a few tests to see how it was actually working, and my doctors were like, the your you're like your inflammatory markers are too high for this to be working.
• 11:37
  SPEAKER_00: This is this is clearly not doing what it's supposed to do.
• 11:39
  SPEAKER_00: But I'd convinced myself that you know it was working, it was fine.
• 11:43
  SPEAKER_00: So they scheduled another colonoscopy.
• 11:46
  SPEAKER_00: Um, it was quite a traumatic one, I won't like.
• 11:49
  SPEAKER_00: It took about two and a half hours just to me whole time.
• 11:53
  SPEAKER_00: And he said to me after the guy that had done the colonoscopy, he said, Yeah, I don't know how you're still functioning.
• 11:58
  SPEAKER_00: He said that like the state of your at the moment is just like appalling.
• 12:03
  SPEAKER_02: Um so how many like times were you going to the toilet then?
• 12:06
  SPEAKER_02: How were your symptoms during that time when you you, as you said, convinced yourself you were better?
• 12:11
  SPEAKER_02: What what were you living with day-to-day?
• 12:14
  SPEAKER_00: Probably like going to the toilet like 10 times a day, which you know, in comparison to like 30, 40, 40 times a day, you know, is a lot better.
• 12:23
  SPEAKER_00: Um, and it it didn't feel as bad for me.
• 12:26
  SPEAKER_00: Um, but I think I just just got used to it.
• 12:29
  SPEAKER_00: I got used to living like that.
• 12:31
  SPEAKER_01: How did it affect your body image and your mental health?
• 12:34
  SPEAKER_01: Because we've met you face to face, you're quite petite.
• 12:38
  SPEAKER_01: You're quite well, you you are, you're you're quite dinky.
• 12:41
  SPEAKER_01: And how did the flare-ups affect you with regards to that?
• 12:45
  SPEAKER_01: Because if you're quite dinky now, I can imagine that you was close to emaciated before the stone surgery.
• 12:52
  SPEAKER_00: My my weight just it it was either I was on steroids and I put loads of weight on, you know, I I had the classic moon face, my face would swell up, or I would be at the point where I'd lost, you know, loads of weight.
• 13:07
  SPEAKER_00: And it was just like a constant, it is a constant battle, isn't it?
• 13:11
  SPEAKER_00: You know, internally with your body image.
• 13:13
  SPEAKER_00: Because I would go from being, you know, a size eight when I'd lost loads of weight and you know, be really slim, like six, eight, to then you know, putting loads of weight on, being on steroids and then you know, being like a like a 12 if you like.
• 13:26
  SPEAKER_00: Um, so it's just it doesn't seem a lot, but it's such a big difference.
• 13:30
  SPEAKER_00: Um, and it it was just a constant like back and forth, back and forth.
• 13:34
  SPEAKER_00: I think only now, like a couple of years after all of this, we're finally at you know, a steady weight and you know, a steady sort of um steady sort of lifestyle now, I suppose, as well.
• 13:45
  SPEAKER_01: How did you find being admitted for the stoma surgery?
• 13:48
  SPEAKER_01: Because you had the you had the proctectomy surgery and the end iliostomy formed in one hip, but you had keyhole surgery as well, didn't you?
• 13:57
  SPEAKER_00: Oh yeah, I'd had the had my stoma formed one surgery and then Barbie part was a leak a year later, sorry.
• 14:03
  SPEAKER_00: Um when I was admitted in, it was planned for my stoma surgery.
• 14:08
  SPEAKER_00: So once I'd had that colonoscopy where they basically said, you know, this isn't working, you need to have this now, you don't have any other options.
• 14:16
  SPEAKER_00: I then was like, Well, okay, I need to accept this, I need to just you know take it for what it is.
• 14:22
  SPEAKER_00: But I was in my second year of uni at this point, I'd just gone back and I said to my surgeon that I didn't want to have to take another year out or another gap.
• 14:31
  SPEAKER_00: So we'd planned it so that I would finish my second year and then have my surgery.
• 14:36
  SPEAKER_00: So I was had to be on steroids for like sort of six, seven months pre-surgery.
• 14:41
  SPEAKER_00: So when I was admitted in, it was planned.
• 14:46
  SPEAKER_00: So it makes it slightly easier because you've got a lot of time to prepare for that and know what's coming.
• 14:51
  SPEAKER_00: Um, but it's it's definitely a shock.
• 14:53
  SPEAKER_01: So I mean obviously, because you had the temporary stoma formed.
• 14:58
  SPEAKER_01: Did you have an end iliostomy formed at the time, or was it a loop that they gave you?
• 15:02
  SPEAKER_01: Because I think everybody seems to think like when you've had stoma surgery done, I think people seem to forget, they seem to think that they've just literally cut it off from part of the bowel and you've got that bow kind of hanging about in your body when it's not the case, it's just literally a case of they they kink it, they knot it, cause a diversion with the stoma, and the rest is left to calm down.
• 15:25
  SPEAKER_01: How did you find that?
• 15:26
  SPEAKER_01: Because didn't you develop diversion colitis and you had a lot with the blood and the not so pleasant smells from the rectum before the barbie but so my first surgery they took my whole large bowel out and just left the rectum in.
• 15:41
  SPEAKER_00: Um, it was just too much sort of colitis in it to save any of it.
• 15:45
  SPEAKER_00: So had the stone form, they left the rectumin.
• 15:48
  SPEAKER_00: Um, and then no one tells you that you know, after the surgery, your rectum can still be active and have active.
• 15:57
  SPEAKER_00: That is so scary.
• 15:59
  SPEAKER_00: And no one talks about it, do they?
• 16:00
  SPEAKER_00: Nobody like no one.
• 16:02
  SPEAKER_02: Oh, I'm so glad you brought that up.
• 16:05
  SPEAKER_00: And I remember coming back home and going having to rush to the toilet again, and blood coming out, and literally texting my friend who um also has a stoma, being like, Oh my god, something's happened, something's gone seriously wrong here.
• 16:21
  SPEAKER_00: Like, I thought that because obviously they staple your rectum up inside, I thought something had gone seriously wrong.
• 16:26
  SPEAKER_00: She was like, No, no, no, that's normal that happens.
• 16:29
  SPEAKER_01: I just thought it's that sheer panic, though, isn't it?
• 16:32
  SPEAKER_01: That that absolute moment of pure unadulterated fear of oh my god, why is this coming out?
• 16:40
  SPEAKER_01: Nobody said this was going to happen.
• 16:42
  SPEAKER_01: What is going on?
• 16:43
  SPEAKER_01: Because I think you automatically think, Oh, it's something unkinked, is something got stuck, is something loose, and it's not explained enough, and it it really should be explained.
• 16:53
  SPEAKER_02: I mean, the way I was described it is so I've got a loop heliostomy.
• 16:58
  SPEAKER_02: Um, and the way they've always said to me is look, it's a good sign if you're passing stuff through your rectum still, because it means it's healthy as it can be and it's working.
• 17:09
  SPEAKER_02: It is still a functioning organ, it just happens to be not where your waste is passing through.
• 17:14
  SPEAKER_02: So they said it's more if you're not losing anything.
• 17:17
  SPEAKER_02: And then if you see blood, then it might, you know, that's not a good sign.
• 17:22
  SPEAKER_01: But that's the thing with diversion colitis, because diversion colitis isn't explained.
• 17:26
  SPEAKER_01: Most of us uh our bowels of uh perform a bodily function.
• 17:32
  SPEAKER_01: And if that bowel, even though it's resting, isn't performing that function, it can just basically, it's like a toddler throwing a tantrum in the nursery.
• 17:42
  SPEAKER_01: It's like, well, I'm not doing what I'm meant to be doing, so I'm going to cause a little bit of fun.
• 17:46
  SPEAKER_01: And the problem that you've got with diversion colitis for many of us, unless you have reversal surgery, the drugs to clear up the diversion colitis don't work.
• 17:58
  SPEAKER_01: So for those of us that a reversal isn't an option, we'll have to have the proctctomy surgery to get rid of the debilitating symptoms that you're having via your rectum with the blood and everything else, because the only way to stop it is to take it out.
• 18:15
  SPEAKER_01: And I think the mentality that you have to have when, especially when you're having barbie butt surgery, is you you have to fight with yourself knowing that once the rectum's gone, that's that's it, that is us for life.
• 18:29
  SPEAKER_01: And I mean, how did you cope with that with you being so young?
• 18:33
  SPEAKER_00: I think I'd already sort of decided that I wasn't gonna have it reversed.
• 18:38
  SPEAKER_00: Um, I think I think there's a lot of people shumped at my decision, like you say, because I am so young and not have it reversed.
• 18:45
  SPEAKER_00: Um, and and like don't get me wrong, I spoke to a lot of people, both people that had the reversal, so you know, they'd had it diverted back and you know, sewn up back to you know their rectum and whatever.
• 18:57
  SPEAKER_00: But I also spoke to a lot of people that kept their stoma, and for me it was a very easy decision, um, which I think shocked a lot of people because you know I'd gone from being so ill that you know I wasn't leaving the house, like you know, I was going to the toilet 30 times a day, you don't sleep, you don't eat, to then having this whole life that you know I could do things, I could go out, I could eat what I wanted, and to not have to worry, you know, rectum rectum issues aside, what's the need to you know fix something that isn't broken, if you like?
• 19:30
  SPEAKER_02: Yeah.
• 19:31
  SPEAKER_00: My my thinking was if I have the reversal, I've then got to learn how to go to the toilet again.
• 19:37
  SPEAKER_00: You know, they said you'd have to wear adult diapers, and I just thought, I'm I'm too young for this.
• 19:42
  SPEAKER_00: I you know, I I don't want to, you know, have that reversal just so I don't have a stoma.
• 19:49
  SPEAKER_00: Like in the grand scheme of things, you know, what what difference is this gonna make to my life?
• 19:53
  SPEAKER_00: Yeah, I'm gonna have a bag.
• 19:55
  SPEAKER_02: Well, I think as well, when people think of stomas, if they're not, if they don't know enough about it, they see it as something that's a problem or something that you don't want or a last resort or your life is over.
• 20:09
  SPEAKER_02: Whereas we know that actually, in many cases, it's a gift.
• 20:13
  SPEAKER_02: Mine to me is a gift.
• 20:15
  SPEAKER_02: I I'm the same as you.
• 20:16
  SPEAKER_02: If anyone wanted to say to me, right, you need reversal, but no, no, thank you.
• 20:21
  SPEAKER_02: I do not want one at all.
• 20:23
  SPEAKER_01: I mean, we've we've just recently had World Ostomy Day, and everybody was posting bag out photos, and this is my stoma bag and everything else.
• 20:30
  SPEAKER_01: And I'm always along the lines of the bag is there to catch the waste, whereas the the bag in the grand scheme of things is a lot bigger than our actual stoma.
• 20:40
  SPEAKER_02: Yeah, definitely.
• 20:41
  SPEAKER_01: And it it's like watching people and seeing people like some of you posting up with the barrier rings with your with your stoma out, or you with your stoma out or me with a stoma out.
• 20:52
  SPEAKER_01: Our stomas are such a tiny part of our life figure, you know, literally speaking, mine's like 20 millimetres, so that tiny little thing on my stomach has completely changed my life.
• 21:06
  SPEAKER_01: Yeah, how do you, with you being so young and obviously having that permanently there, how have you managed with your body image?
• 21:14
  SPEAKER_01: I mean, you have a fantastic figure, and watching you when we was at the show, what you know, sometimes you can have girl crashes.
• 21:20
  SPEAKER_01: Well, girl crash.
• 21:22
  SPEAKER_01: Um it's seeing you because you've had keyhole surgery without the scars and without the stretch marks.
• 21:30
  SPEAKER_01: I think for somebody your age to be able to see you and find you relatable and to be able to aspire to be like that and get on with life.
• 21:43
  SPEAKER_01: How how do you find that?
• 21:47
  SPEAKER_00: Yeah, I I just think I probably have a lot better, you know, body, body image, body, you know, confidence now than I did before.
• 21:55
  SPEAKER_00: Um, especially like, you know, when you get ill, you don't want you just want to hide away.
• 22:00
  SPEAKER_00: You know, you don't want to show off anything or be the centre of attention or be, you know, draw any attention to yourself for that matter.
• 22:07
  SPEAKER_00: So, you know, where would if you told me that I would then be doing photo shoots and getting my bag out in my underwear, you know, I would never have believed you.
• 22:18
  SPEAKER_00: Yeah.
• 22:18
  SPEAKER_00: So it's just been such a change that you know, I do love my body now, it is healthy, you know, I'm happy.
• 22:25
  SPEAKER_00: Um, and that's something that you know I'll never really be able to get over because I I was so unhealthy for you know, not not a long time, but for you know, for a few years, yeah.
• 22:37
  SPEAKER_02: Well, not me.
• 22:38
  SPEAKER_02: I mean, because we are it v very immersed in the stoma community, we know plenty of people on a friendship level, on uh you know, just through social media friendship level, but so I think sometimes you take it for granted that in your where you live, there aren't that many people that are living our lives, is there?
• 22:57
  SPEAKER_01: See, the thing was, if if social media was a thing back when I first had my stoma surgery, if I'd have seen an image of sty of Summer with a stoma bag or with with with just with with with her iliostomy out, that would have been so helpful back then for me to see.
• 23:15
  SPEAKER_01: Yeah.
• 23:15
  SPEAKER_01: But at the same time, we're we're all representative of different figures and different surgery types and different illnesses.
• 23:25
  SPEAKER_01: I mean, how did you find recovery after obviously the proctectomy surgery?
• 23:31
  SPEAKER_01: Because you had a few issues, didn't you?
• 23:34
  SPEAKER_00: Yeah, I mean, it's not a nice surgery, the Barbie butt isn't enjoyable.
• 23:39
  SPEAKER_00: I'll be honest.
• 23:40
  SPEAKER_01: Um the whole waking up with um the tube, which feels like you've literally got a leg, a log wedged between your back cheeks.
• 23:51
  SPEAKER_02: So can you could you guys just so I don't I haven't had it for those of us that haven't seen or can't could you paint the picture of you've had your surgery, you wake up, what is coming out of it, what's going in with, what's going on.
• 24:06
  SPEAKER_02: Sorry.
• 24:07
  SPEAKER_02: So right.
• 24:10
  SPEAKER_00: So for my my Barbie butt, I had an epidural, my pain was poorly managed the first time round, so I was very keen on having something that actually you know done something.
• 24:22
  SPEAKER_00: So I woke up from my surgery um after the Barbie butt.
• 24:26
  SPEAKER_00: I couldn't feel anything from the waist down.
• 24:28
  SPEAKER_00: I was laid on laid on my back.
• 24:30
  SPEAKER_00: Um, I didn't have any drains, anything, I've never had any drains.
• 24:35
  SPEAKER_00: Mine was just sewn all individual layers, so my rectum obviously was closed, obviously big scar, but you know, couldn't feel anything.
• 24:42
  SPEAKER_00: I woke up, I think I ate about 20 custard creams.
• 24:46
  SPEAKER_02: Oh, those fish biscuits.
• 24:47
  SPEAKER_00: Oh yeah.
• 24:50
  SPEAKER_00: So at that point, I'm thinking, this is great, I can I can do this.
• 24:54
  SPEAKER_00: And then turn I turned to my side, all the epidural laid in one leg, so I then couldn't move, you know, half my body.
• 25:02
  SPEAKER_00: So they flipped me back over onto the other side to try and even it out.
• 25:05
  SPEAKER_00: Um, but it just wouldn't budge, so they had to take it off and stop the epidural.
• 25:11
  SPEAKER_00: And that's when the pain starts to hit.
• 25:13
  SPEAKER_00: Um, I won't sugarcoat it, it's brutal.
• 25:17
  SPEAKER_00: Um, I was a lot healthier obviously going into my second surgery, still on steroids, um, but yeah, a lot healthier, but it's a lot, it's a lot harder surgery to recover from.
• 25:28
  SPEAKER_01: But the problem that you've got as a female having protectomy surgery is where they go through and how they go through to get out the rectum and remove things.
• 25:39
  SPEAKER_01: So you had keyhole surgery, whereas mine was a laparopter, I was opened wide up, and my rectum had a deer to my uterus, so they was in places unpicking things to try and get my rectum removed.
• 25:55
  SPEAKER_01: So I had drains in places I didn't even know that you could have drains, and waking up with a drain literally in the front of your pubit, your your pubit, so it's basically going through the vaginal wall, and then you've got another one in your abdomen next to your stoma, not to mention the drain between one's butt cheeks because of how they had so you both had a drain between your butt cheeks?
• 26:22
  SPEAKER_01: No, so I didn't.
• 26:23
  SPEAKER_00: You didn't have to have yours pack, Louise?
• 26:27
  SPEAKER_01: No, uh thankfully for me, given my healing history, my barbie butt healed absolutely fine.
• 26:35
  SPEAKER_01: However, having the drain removed from said Barbie butt, um I don't know, it's a really weird thing, but when they remove drains, because things heal up around the drain, it kind of has to be tugged and pulled out.
• 26:50
  SPEAKER_01: So the best advice I can give anyone if you're having the drain removed before going home, take the pain meds half an hour before having it pulled.
• 27:00
  SPEAKER_01: It's just a case of deep breath in and let them pull out.
• 27:04
  SPEAKER_01: Yeah, having that just that feeling of having the drain removed and popped out, it it it feels like things are just being pulled out of your body where they shouldn't be they shouldn't be pulled out from.
• 27:16
  SPEAKER_01: But uh I mean, how was you with your hormones?
• 27:20
  SPEAKER_01: Because I know for two years post-protectomy, it took a very long time for my hormones to settle and for all of that to settle down there because of the swelling.
• 27:30
  SPEAKER_00: Yeah, I to be honest, I didn't really have many issues with it.
• 27:33
  SPEAKER_00: Um, I think I was quite lucky in the sense that once it started to heal, um I just seemed to go back to back to my normal self.
• 27:42
  SPEAKER_00: Didn't really have any issues with that.
• 27:44
  SPEAKER_00: Obviously, they say um one of the big concerns of having a Barbie batter my age is like fertility issues, um, with obviously me not having any children or you know, any plans to have one, you know, anytime soon.
• 27:58
  SPEAKER_00: Uh that's probably the only thing that they're you know cautious of, but I yeah, I didn't really have any other any other issues.
• 28:05
  SPEAKER_01: I was gonna say you you do know that because of the surgery that you've had, dependent on what trust that you're under, that you can actually, when when you do decide to think about having children, because of the protectomy surgery, you can actually go for a pre-pregnancy counselling meeting so you can have things checked and your fertility levels checked and things checked before you do decide to proceed with pregnancy.
• 28:29
  SPEAKER_00: Yeah, I know there's I know they do offer a lot of support.
• 28:32
  SPEAKER_00: Um, and even when I spoke to my surgeon about it, you know, it's not a definite that there's gonna be, you know, scarring around the womb or anything like that.
• 28:40
  SPEAKER_00: So it's just one of those that when you know when you do have your surgery and you sign your life away on all of these different, you know, possible side effects, it is just one listed, isn't it?
• 28:49
  SPEAKER_02: Yeah.
• 28:50
  SPEAKER_02: I I wanted to go back to the rectal mucus only because it's never really spoken about, and I do think it's a side effect that it's you know, there's one thing when we you know post things where we're showing our bag and that, but I do think there is this massive stigma about rectal mucus because the 3am sitting on the toilet waiting for literally the well, what feels like the world to fall out of your backside when it's a tiny little nugget about.
• 29:17
  SPEAKER_02: Yeah, and I mean also with you know phantom rectum pains as well and the feeling of needing the toilet when obviously you two more than me, I mean, I get them, it's not very nice and annoying as hell.
• 29:29
  SPEAKER_02: I can't imagine what that feels like when you've had barbie but I mean, obviously you're not gonna pass mucus because you've had barby butt surgery, but how are the phantom rectum pains?
• 29:39
  SPEAKER_02: How how often do you get them?
• 29:42
  SPEAKER_00: How does it how do you manage that time and suppose a lot of the you know rectum uh like mucus stuff first?
• 29:49
  SPEAKER_00: Um for me it was just like obviously mucus and blood uh and I would probably have that, you know, 10 times a day.
• 29:58
  SPEAKER_02: Um how did you deal with that?
• 30:00
  SPEAKER_02: I mean, could you I know like some of us, I mean, I I had surgery when I was a couple of weeks old for a stoma, had it reversed at two, had a J pouch formed, then I had more stoma surgery at 30, so I've had it all really, but I but I mean the the the rectal mucus I still get to this day, and I do have control there, and I do hold it nine times out of ten, but I'm not gonna lie, I don't always, and it's how did you manage that ten times a day?
• 30:30
  SPEAKER_01: Sanitary towels.
• 30:32
  SPEAKER_00: Uh I I think you just get used to it, don't you?
• 30:35
  SPEAKER_00: Um I was then at that point as well back at uni, so this was obviously post-Soma, pre-Barbie bath.
• 30:41
  SPEAKER_00: So was that away from home, sorry?
• 30:43
  SPEAKER_00: Was that in back in Newcastle?
• 30:45
  SPEAKER_00: No, so I stayed and finished it back home in Essex.
• 30:48
  SPEAKER_00: So it wasn't it wasn't as hard because I wasn't going out and about as much because I was doing my degree at home, and with it all being on Zoom, you know, it's always great.
• 30:59
  SPEAKER_00: So I managed it quite well.
• 31:01
  SPEAKER_00: Um, the Phantom Rectum to you where you feel like you really need to go.
• 31:05
  SPEAKER_00: I did get that, um, but sort of post-Barbie but I got it for a couple of months, but you know, since then I probably get it like you know, once every couple of months, and I think what does it feel like to you with the phantom rectum?
• 31:20
  SPEAKER_01: Because everybody has like a different way of describing it.
• 31:22
  SPEAKER_00: Yeah, I just think, oh my god, I really need to go to the toilet.
• 31:26
  SPEAKER_00: Go and sit on the toilet.
• 31:27
  SPEAKER_01: Oh, sit on the toilet, yeah.
• 31:28
  SPEAKER_00: I go and sit on the toilet, and then I'm like, Oh, I haven't got a bum anymore.
• 31:36
  SPEAKER_00: And then once I think, yeah, I I can't, you know, it's fine.
• 31:40
  SPEAKER_00: Yeah.
• 31:41
  SPEAKER_00: Um, and it sort of passes quite quickly.
• 31:44
  SPEAKER_00: And then I just try and do something else to distract myself as well from it.
• 31:48
  SPEAKER_02: I mean, how in your day-to-day life as you are now, and you said you're feeling really healthy and you you do everything you want to do.
• 31:54
  SPEAKER_02: Do I know some people live in the camp of they know they've got this stoma, they're conscious of it all the time.
• 32:00
  SPEAKER_02: Other people forget they even have one.
• 32:03
  SPEAKER_02: Where do you lie in that camp in your day-to-day life?
• 32:06
  SPEAKER_00: Definitely on forget I have it, um, to the point where um, yeah, I just I just don't I don't think I have it.
• 32:14
  SPEAKER_00: I forget uh, you know, I change mine quite regularly, once every day, once every couple of days, more for sort of personal preference.
• 32:21
  SPEAKER_00: I know you can obviously leave it a bit longer.
• 32:23
  SPEAKER_00: Um, I just find that that allows me to just you know forget it's there, and I think that's you know, part of finding the right stoma bag and you know, all of that that really helps with you know just living living in life with it.
• 32:37
  SPEAKER_02: That and that's lovely, isn't it to hear?
• 32:38
  SPEAKER_01: Yeah, how do you find your stoma?
• 32:40
  SPEAKER_01: Because obviously everybody's different, but obviously, because you've you was ulcerative colitis, I I'm guessing that your stoma's a bit more slow because you've got the ilium at the end.
• 32:53
  SPEAKER_00: So um my stoma, so like my outfit's very like watery, it's very liquidy, um, depending on what I eat as well.
• 33:01
  SPEAKER_00: I'm not eating as much, um, but it it it comes out quite a lot.
• 33:06
  SPEAKER_00: Um, I find that things leave my system very quickly as well.
• 33:09
  SPEAKER_00: So um it it's just a case of yeah, just just monitoring it, I suppose.
• 33:14
  SPEAKER_01: And do you ever play with whatever comes out sometimes?
• 33:17
  SPEAKER_01: Because I know this isn't spoken about enough.
• 33:21
  SPEAKER_01: So you see it's everyone sat here laughing and going, what anything.
• 33:25
  SPEAKER_02: This is where the gentleman in the booth next door is about to hit all my record.
• 33:30
  SPEAKER_01: So with an ileostomy, dependent on what parts of your small bowel have have been removed, I've got a very short digestive tract.
• 33:38
  SPEAKER_01: So the majority of what I eat is normally out within the hour.
• 33:43
  SPEAKER_01: If it's carbs fluid, vegetables tend to stay in me a little bit longer, but that it it's kind of I've kind of like have a time system at home of what of whether it's potatoes.
• 33:54
  SPEAKER_01: So I d I avoid potatoes, it pancakes my bag, gives me blockages, it pressures my bag off.
• 34:00
  SPEAKER_01: But there are times that if you don't chew very well, the the veg kind of cuts out the way it made its way down the esophagus.
• 34:08
  SPEAKER_01: What happens to people without stomas, though, as well.
• 34:11
  SPEAKER_01: You don't you don't play with your fecal matter, do you?
• 34:13
  SPEAKER_01: When it gets chewed, so you know when you fill your bag and you've had peas and sometimes if you haven't chewed them, they come out whole.
• 34:22
  SPEAKER_01: So you pop them as to sit in the bag.
• 34:29
  SPEAKER_00: I think we need to get your stress toileries.
• 34:35
  SPEAKER_01: What to drink?
• 34:36
  SPEAKER_01: Have a fidget thingy's fidget toy.
• 34:40
  SPEAKER_01: Yeah, but don't you don't you don't feel your bag and you can feel the stuff coming out, and you're like, I know exactly what that is just by feeling, or am I the only person?
• 34:51
  SPEAKER_01: You're not alone.
• 34:52
  SPEAKER_02: I mean, I don't do that.
• 34:53
  SPEAKER_02: I've I like do you do that?
• 34:58
  SPEAKER_01: No, not even in the morning when the bag closed up.
• 35:03
  SPEAKER_01: Do you know when you have to do the side crawl out of bed?
• 35:06
  SPEAKER_01: Oh, I'm good.
• 35:09
  SPEAKER_01: Oh, love you.
• 35:10
  SPEAKER_01: We love you.
• 35:13
  SPEAKER_01: It's a fabulous party trick.
• 35:15
  SPEAKER_01: Um can you tell what you've eaten by just looking at it on the bag?
• 35:18
  SPEAKER_01: Oh well, yeah, there is that.
• 35:20
  SPEAKER_02: Thank God for opaque bags and I I do like so like the bag I use, so I use the One Piece Mode V, and I do love that huge window.
• 35:30
  SPEAKER_02: Because, you know, if I've had something and I've got a bad stomach, maybe the consistency changes, maybe the colour, maybe, and I can just have a visual check.
• 35:37
  SPEAKER_02: And normally nine times out of ten, I could oh yeah, definitely that's to do with what's something I mean.
• 35:42
  SPEAKER_01: Having that viewing window, it kind of lets you know what what things are doing.
• 35:46
  SPEAKER_01: So I use the barrier rings because my output breaks down the base plate, and sometimes if I cut my base plate a bit too wide, you can kind of see the the moisture is drawing the barrier ring up the side up the side of the bag and I can see it through the window.
• 36:02
  SPEAKER_02: Because you use the same barrier rings as us, don't you?
• 36:05
  SPEAKER_02: The free seal.
• 36:06
  SPEAKER_02: So we were talking about this to Keith actually on the last episode.
• 36:09
  SPEAKER_02: So when you ha woke up from your stoma surgery and you were told what to use in that, were you told about seals and why did you start using them?
• 36:19
  SPEAKER_00: So when I woke up from surgery, I was given like the hospital issues bags, no seals, anything like that.
• 36:26
  SPEAKER_02: Wasn't in a jazzy black or anything, it was beige.
• 36:29
  SPEAKER_02: No, just it's it's like a beige, like a see-through.
• 36:32
  SPEAKER_02: Oh, that's so depressing, isn't it?
• 36:35
  SPEAKER_01: How did you you find that?
• 36:37
  SPEAKER_01: Because I I think the shock of waking up with a surgical ostomy bag and how swollen the stoma is at the time, how did you find that?
• 36:47
  SPEAKER_01: Because the the other scary thing is is they keep that opaque bag on as long as possible, and if they change it, they keep it opaque until they check whether you stitches are dissolved or your stoma's doing what it's doing.
• 37:01
  SPEAKER_01: But kind of being able to see that day to day, hour by hour, and watch the changes that your stoma is going through in that period of time.
• 37:08
  SPEAKER_01: How did you find that with your mental health?
• 37:10
  SPEAKER_00: So, when they had the clear bags on, um, I really didn't rate it, I'll be honest.
• 37:16
  SPEAKER_00: Um it's just one of those where you think, you know, I get why you've got to do it, but I don't really want to see that.
• 37:21
  SPEAKER_00: Like you say, it's very swell, it's very sore, you know, there's a lot going on.
• 37:26
  SPEAKER_00: So I just brought um I brought covers for to put over them while they were clear.
• 37:30
  SPEAKER_00: Oh, that's such a good idea.
• 37:32
  SPEAKER_00: I wouldn't have thought of that.
• 37:33
  SPEAKER_00: Yeah.
• 37:33
  SPEAKER_00: And then as soon as I was able to do it, and you know, I got my own bags and I got into my own routine.
• 37:39
  SPEAKER_02: So, what about the so when did you start using seals and why?
• 37:44
  SPEAKER_00: So I used the seals, I think it was probably like a couple like a month or so after my surgery.
• 37:51
  SPEAKER_00: I was just finding that like that whatever bags I were using just weren't lasting, um, and I just kept getting leaks and you know things like come onto my skin.
• 38:00
  SPEAKER_00: So I used some seals, they were very thick.
• 38:03
  SPEAKER_00: Um sort of sort of did the job in regards to helping to helping the b bag last a little bit longer, but I just just found them really constrictive.
• 38:14
  SPEAKER_00: I'm a bit of a fidgeter, um, I like to move around a lot, um, and I just just found it like tugging my skin every time I moved.
• 38:22
  SPEAKER_01: Oh yeah, because unfortunately some barrier rings are more like a plug, they're more like a washer than the ones that we use that move with the body.
• 38:32
  SPEAKER_00: Um they're using the Eating Free Seals.
• 38:36
  SPEAKER_00: I I only use them because they were so thin.
• 38:38
  SPEAKER_00: Yeah, and then yeah, I just started using them from there.
• 38:42
  SPEAKER_00: And I to be honest, I I don't ever change my bag and not put a seal on now.
• 38:46
  SPEAKER_02: No, I ooh, question.
• 38:48
  SPEAKER_02: Do you put your seal on your skin or on your bag?
• 38:53
  unknown: Skin.
• 38:53
  SPEAKER_02: On your skin.
• 38:54
  SPEAKER_02: Yeah, see, I do as well.
• 38:56
  SPEAKER_02: And then I think someone shared the other day someone put in it.
• 39:00
  SPEAKER_02: Yeah, and I I I tried it the other day.
• 39:03
  SPEAKER_02: I thought, right, I'll have a wheel.
• 39:05
  SPEAKER_02: Um, but I just didn't feel like I had enough control.
• 39:08
  SPEAKER_02: I like I like to know I've sealed that peristomal skin in before I put my bag on.
• 39:14
  SPEAKER_02: I don't know about you two.
• 39:15
  SPEAKER_01: Every everybody's different with how they do things, and it tends tends to be more Americanized where they place the seals actually on the base plate around the hole and then put the bag on.
• 39:25
  SPEAKER_01: But I remember like back in the day of like trying to mould, like you you know like how mouldable the free seal is and like how we pull it apart.
• 39:35
  SPEAKER_01: It's very easy just to tug it a little bit to the size of your stoma and then put it through, and you've got the correct seal.
• 39:43
  SPEAKER_01: And I remember like back in the days of like first stoma life and watching the stoma nurse do that with the bury ring, and I'm like, my god, it's like you need a PhD in Bacano on how to how to like kind of get it to like the shape of the stoma, but using the free seals compared to other bury rings, it is an absolute game changer.
• 40:03
  SPEAKER_01: Being able to get that around your stoma and not have to worry about anything getting onto your skin is such it's a relief.
• 40:15
  SPEAKER_02: So you were with your partner pre-surgery.
• 40:18
  SPEAKER_02: So, how did you find that?
• 40:20
  SPEAKER_02: How did you both, as a couple, a young couple, navigate all of that that the hospital stays, the changes in your body, and how did you guys find that?
• 40:29
  SPEAKER_00: I think um I think I probably lucked out.
• 40:32
  SPEAKER_02: Um I mean, look at this, you can tell she's in love, she's glowing.
• 40:39
  SPEAKER_02: That's not just hair oil.
• 40:47
  SPEAKER_00: I think for me, um, you know, I I've been with my boyfriend since I was like very young.
• 40:54
  SPEAKER_00: So, you know, he's even old.
• 40:56
  SPEAKER_00: How old?
• 40:57
  SPEAKER_00: 16.
• 40:58
  SPEAKER_00: So it you know, it's it was pre pre-colitis, you know, it was it was during colitis, um, and then it was the surgery, and then it's you know, Barbie Barb, it's it's that it's that whole transition.
• 41:14
  SPEAKER_00: Um, and I think as well for him, you know, more than anything, um the the stone surgery was the right thing to do because he he's seen firsthand as well, you know, like my family, how much pain and you know how much I was suffering.
• 41:29
  SPEAKER_00: So it was it was a good thing for you know for me as well as everyone else because I I really did get my life back.
• 41:36
  SPEAKER_01: It's it's nice to see because doing what we do on social media, especially with regards to some of the younger generation, everything is so much more of having a perfect life and things being perfect.
• 41:51
  SPEAKER_01: There is kind of especially like with likes of Love Island, there's like a narcissism that that goes behind having the the body attributes and being physically perfect.
• 42:04
  SPEAKER_01: So having a relatively young, like yourself, 23-year-old with somebody and with a partner that loves you and hasn't changed because you've had the stoma surgery, it's quite positive and and enlightening to see because we do see it all the time in groups.
• 42:19
  SPEAKER_01: I've had my stoma surgery, my partner's left me, my girlfriend doesn't like it, we're no longer intimate.
• 42:26
  SPEAKER_01: It's upsetting to see, but it's it's just finding the right person, isn't it?
• 42:31
  SPEAKER_00: You know, like yourselves.
• 42:33
  SPEAKER_00: You know, we speak to a lot of people that are looking for a bit of you know just someone to chat to a bit of friendly advice.
• 42:39
  SPEAKER_00: And I think a lot of the time, you know, you need someone that's going to be able to be supportive, and not just your partner, you need really good friends, you need you know good family.
• 42:49
  SPEAKER_00: Um, because it it is a really big life-changing thing at the end of the day.
• 42:53
  SPEAKER_00: Um, I think we sometimes gloss over that because it is our everyday lives now.
• 42:57
  SPEAKER_01: Um, but it it it's so important to talk about and I I think that there's a um I'm just trying to think of the mental impact that it has on our partners.
• 43:13
  SPEAKER_00: I think it's I think it's it's it's hard for them.
• 43:16
  SPEAKER_00: Um I know speaking to you know my partner, my family, um it is a big it's a big thing, it's a big worry as well, you know.
• 43:24
  SPEAKER_00: It is that there's a lot of risks that come with the surgery.
• 43:27
  SPEAKER_00: You know, I think my first surgery, you know, it's thinking it's like eight hours, isn't it?
• 43:32
  SPEAKER_00: You know, my second Barbie bat was to think a bit longer.
• 43:34
  SPEAKER_00: So that whole time you're just worrying, aren't you?
• 43:37
  SPEAKER_01: I think you forget that because you're you're so involved, you don't think about that and you just want to reflect on how other people would would you say that like the advice that you you gave to your partner and your family is like don't Google things, don't go on YouTube, because I made the epic mistake of Googling and YouTube and they've stuck a proctomy surgery on YouTube, and I I have seen um so one of my really close friends, um Ali Little Miss client she might know her as um she was helping me sort of prepare for my surgery, and she said, Do you want to see a video?
• 44:14
  SPEAKER_00: I watched a video before mine.
• 44:16
  SPEAKER_00: Um I said, I don't know if I want to, but I mean I was like, Yeah, go on then.
• 44:21
  SPEAKER_00: And then I was like, Yeah, probably not gonna watch that again.
• 44:23
  SPEAKER_00: It's very gruesome.
• 44:25
  SPEAKER_00: But I would probably say that just be just be informed.
• 44:30
  SPEAKER_00: Um I had a lot of people come with, you know, to meet the surgeon, ask a lot of questions.
• 44:36
  SPEAKER_00: There's there's being informed, and there's you know, I think I think it's difficult, all the the information out there.
• 44:42
  SPEAKER_00: Um, you've got different groups, different forums of horror stories.
• 44:47
  SPEAKER_00: You've you've got all of that.
• 44:50
  SPEAKER_01: That's the thing.
• 44:51
  SPEAKER_01: We only ever tend to get the horror stories, we don't always get the positive.
• 44:57
  SPEAKER_01: And I just remembered it it was only after my proctctomy surgery that I'd realised that my surgeon had probably seen me naked more times than my other half.
• 45:08
  SPEAKER_01: Well at times I've been down in theatre, so it's it's quite a lot to wrap your head around because you don't think about that, do you, until you're absolutely mortified sitting in an appointment fully clothed, and your surgeon asks you about the latest tattoo and does my mum know if I've got it?
• 45:22
  SPEAKER_02: Oh my god.
• 45:24
  SPEAKER_02: So, I mean, Summer for just to finish off, what would your advice be for anyone that's struggling to accept this stoma from your perspective?
• 45:34
  SPEAKER_00: That's a good good question.
• 45:36
  SPEAKER_00: I I think you've just got to learn learn to love it and learn to love yourself for it.
• 45:42
  SPEAKER_00: And I think that comes with confidence and getting back out there.
• 45:47
  SPEAKER_00: I think we all probably you know hide ourselves away a little bit, especially when you're ill, you've got colitis, Crohn's, or you know, we've got anything else that leads you to that.
• 45:58
  SPEAKER_00: You know, you're not in the right head frame and you're not in the right space.
• 46:02
  SPEAKER_00: So I think coming out of that, give yourself some time, you know, reach out to us, speak to people that can relate because as great as it is to have an amazing support network of family, friends, partners, they're never going to understand.
• 46:16
  SPEAKER_00: So sometimes you just need to speak to someone that's been through it, you know, get get yourself back out there and um just just own it, I think.
• 46:25
  SPEAKER_02: Well, thank you so much for coming on the podcast.
• 46:29
  SPEAKER_02: And it's lovely to see you so happy and healthy and glowing.
• 46:33
  SPEAKER_01: And we're just lovely, and she's been sending us hair all.
• 46:37
  SPEAKER_02: Yes, and if anyone wants to know why Summer's hair is glowing, we have links we can send.
• 46:44
  SPEAKER_02: But thank you so much for listening to Beyond the Pouch.
• 46:46
  SPEAKER_02: We hope you've gained something valuable from this episode, and thank you so much, Summer, and we'll catch you soon.
• 46:52
  SPEAKER_03: Bye.
• 46:52
  SPEAKER_02: Thank you.
• 46:53
  SPEAKER_02: Bye.