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Living as a Woman with a Stoma: International Women's Day Special - Beyond the Pouch · Beyond the Pouch

0:00
SPEAKER_02: As a woman, we've got a few extra fun things to contend with.
0:03
SPEAKER_04: Self, self-centeredly and vainly, I just didn't want to be a woman with a stoma bag.
0:08
SPEAKER_00: How was that first period after surgery?
0:12
SPEAKER_00: So it just really took me a long time to build up like the courage to do a bag change.
0:16
SPEAKER_00: So whenever I actually had to deal with my period at the same time, I was like, there's so much going on.
0:22
SPEAKER_00: And that's bonkers, isn't it?
0:23
SPEAKER_04: Because you think you've got a stoma bag, you've still got active UC in your rectum, and then a period sprinkled on top.
0:30
SPEAKER_03: Before I had the stomach bag, I was worried about my cesarean scarf.
0:33
SPEAKER_03: Now I've got a stomach bag.
0:35
SPEAKER_03: Nobody knows it's a cesarean scar.
0:37
SPEAKER_04: It's definitely a stoma bag that takes precedence.
0:39
SPEAKER_04: So my one piece of advice for someone who has a new partner is to be open and honest and talk about it.
0:46
SPEAKER_02: I'd say from the get-go, it showed that that person wasn't the right person.
0:51
SPEAKER_02: I credit my stoma for shining a light on that and getting me to where I am now with someone who is what sounds like your people.
1:01
SPEAKER_04: I'd be lying if I said that fertility and getting pregnant with a stoma is not something that I worry about on the daily.
1:24
SPEAKER_02: So the guys have had this special and they absolutely smashed it, and we are here to have our time to talk all things women.
1:32
SPEAKER_02: Um so we are gonna kick things off with um when you had your surgery, was there a conversation about how it would affect you as a woman?
1:42
SPEAKER_02: Jo, did you have that conversation?
1:45
SPEAKER_03: Um no, I don't remember ever having conversations around that.
1:49
SPEAKER_03: There wasn't an awful lot of uh information about how it would affect me at all, but it was quite kind of short notice.
1:57
SPEAKER_03: So um my surgery, as I think it was for some of the others, was it was an emergency surgery, so I only knew the very shortly before I had the surgery that I was going to need it.
2:08
SPEAKER_03: So I was I was had had lots of different types of medication, tried various different things, including including biolog biologics and um transfusions, um but kept having to go back to the steroids because that was the only thing that was keeping me okay.
2:25
SPEAKER_03: Um and every time I tried tapering down from those I was getting poorly again, so surgery became the only option.
2:32
SPEAKER_03: But I only knew that I I was told I needed to have surgery the following day.
2:36
SPEAKER_03: Um and then my surgery kept getting cancelled, so it actually ended up happening a f a few days later.
2:43
SPEAKER_03: Um but yeah, not a lot of time to prepare and certainly not much information about what life would be like afterwards.
2:49
SPEAKER_02: Yeah, and how I suppose as a woman we've got a few extra fun things to contend with as opposed to men, and they do get affected.
2:57
SPEAKER_02: And we asked our followers um if they had any questions to ask you guys, and there were so many, weren't there?
3:02
SPEAKER_02: And I know you poppy had the same about um fertility and about how it affects your periods and stuff, and like for you it was very short notice for you as well, wasn't it?
3:11
SPEAKER_04: Yeah, and I think so I was told I'd been in hospital for three weeks, and I I at first I genuinely believed that I'd leave the hospital with just another new medication that would fix me.
3:22
SPEAKER_04: And then I was told, look, tomorrow you're gonna have to have stoma surgery, otherwise you're not gonna leave the hospital alive.
3:27
SPEAKER_04: And I think looking back, I didn't really I didn't really care about the what the future complications would be as a woman.
3:34
SPEAKER_04: So it wasn't ever questions I'd ask.
3:36
SPEAKER_04: I self self-centeredly and vainly, I I just didn't want to be a woman with a stoma bag because I didn't want to I didn't want to change my body.
3:44
SPEAKER_04: I was so scared that how I would be perceived with a stoma bag.
3:49
SPEAKER_04: And I don't think that I ever had time to get my head around that, let alone ask questions that would it ch change and affect my life in the future.
3:59
SPEAKER_02: And with the short notice, because you're the same, like you I suppose if you're trying to get your head around, oh my gosh, I'm having this surgery, you're not gonna think, oh, actually, I need to ask all these other questions.
4:10
SPEAKER_02: It's not gonna happen, is it?
4:11
SPEAKER_00: No, not at all.
4:12
SPEAKER_00: I think whenever you're told like short notice, um like I remember like that experience, I just thought like my whole world was crashing down around me.
4:20
SPEAKER_00: And I literally got my camera test on the Thursday, and my surgeon has said, if I don't get this emergency stomach surgery tomorrow, which was Friday, that I wouldn't see Monday.
4:29
SPEAKER_00: And I was like, you know, in my head, like I was like, is that really worst case scenario?
4:34
SPEAKER_00: Um I just feel like when you're going through that pain as well, you just continue to go through it, you don't realise how sick you really are.
4:41
SPEAKER_00: And I was like, I will actually like question a surgeon whether like my surgery really is like that severe.
4:48
SPEAKER_00: Like I just didn't believe I needed emergency surgery.
4:51
SPEAKER_00: Um and again, I was just told I needed that surgery, wasn't sure of the aftermath or how all that was gonna be.
4:57
SPEAKER_00: Um I remember actually with my follow-up appointment, my surgeon has said that you know, like I'll need a second surgery, which is the um Bibat surgery.
5:05
SPEAKER_00: Um and I was like, sorry, what this is all new information to me.
5:09
SPEAKER_00: Like I was just so naive to it all.
5:11
SPEAKER_02: Yeah, and and it's such a shame, isn't it, that you felt that you were naive to it all when actually it's just because you weren't given the information and you weren't and like you didn't have a lot of time, like you all weren't given a lot of time, but also would it have changed things if someone had a a bit more of a conversation with you?
5:29
SPEAKER_04: I think it wouldn't it like I can't I remember waking up and saying like I'd got over osteopolitis, and I remember a nurse being like, No, no, no, you you still have it in your rectum, like it's still there.
5:40
SPEAKER_04: And I was like, what do you mean?
5:41
SPEAKER_04: Like I've gone through this hell.
5:43
SPEAKER_04: I now have something that I never ever wanted, and I still have it.
5:46
SPEAKER_04: And like I was always under the impression that a stoma bag was a cure, and I feel like in my case it isn't.
5:53
SPEAKER_04: And I just feel like, yeah, again, I was very naive going into it thinking, right, I'll have this done, then that'll be it.
5:58
SPEAKER_04: And I can't believe like four years on I'm still having symptoms.
6:03
SPEAKER_02: Yeah, that's a really good point, actually, that it's not like stoma bag, fix it, skip off into the sunset.
6:09
SPEAKER_02: And again, if those of us that post online and you know uh and do positive stuff, it's very easy, isn't it, to look at that person that looks confident with their bag and think, oh well their life looks great.
6:22
SPEAKER_02: Why isn't mine like that?
6:23
SPEAKER_02: But that's a tiny snippet, isn't it?
6:26
SPEAKER_02: That's a tiny moment, and that's not the reality of it all, is it?
6:30
SPEAKER_03: And it takes time to it, doesn't it?
6:32
SPEAKER_03: I think it and it'll take different people different amounts of time to get to the point where it'll it feels okay and you you're comfortable and confident with it.
6:41
SPEAKER_03: So it's just a a bit of a bit of a journey skill, isn't it?
6:44
SPEAKER_02: We all put ourselves online um and we all show the highs and the lows, and we're quite, you know, like I Poppy, I'll go to you, like you you're very raw and you're very real on yours.
6:55
SPEAKER_02: And um I mean you get I think you said before, you get messages, you get a lot of messages, and like I don't know about you, Joe, you're quite new to it, aren't you?
7:04
SPEAKER_02: I suppose you're the newbie of the group.
7:05
SPEAKER_02: Very new.
7:06
SPEAKER_02: How are you finding it?
7:08
SPEAKER_02: Because this is a whole new world for you, and for I suppose for someone who's new to it and wants to put themselves out there to connect with people, what advice would you give them?
7:17
SPEAKER_03: So I started doing it on impulse about three weeks ago, so it's really new.
7:22
SPEAKER_03: Literally so new.
7:23
SPEAKER_01: I'm excited for it.
7:25
SPEAKER_01: It's so exciting, it's a huge deal.
7:27
SPEAKER_01: Like you should be so proud.
7:29
SPEAKER_03: Thank you, that's really kind.
7:30
SPEAKER_03: It's been genuinely so far, everything's been really positive, and I've got stuff out of it that I wasn't expecting to.
7:38
SPEAKER_03: People have been so kind and generous in what they've shared with me and the advice they've given.
7:43
SPEAKER_03: And I'm at a point where I'm trying to kind of be consistent with fitness and build up my strength and help myself to just feel a bit more capable in my body.
7:54
SPEAKER_03: Um, and so there's bound to be the occasional challenge with that, whether it's related to stomas or not, for people.
8:01
SPEAKER_03: And some of my more stoma-related stuff is quite niche, it's quite specific questions and queries to come up with as you're going through that.
8:09
SPEAKER_03: And the community that I now have online through the social media is has really helped with you know, people coming forward with advice and support and suggestions and just a bit of kind of cheerleading along the way, which has been been really positive for me so far.
8:23
SPEAKER_03: So all good for me.
8:24
SPEAKER_03: Oh, that's lush.
8:25
SPEAKER_02: Um I want to one question that the followers asked a lot about was periods.
8:30
SPEAKER_02: And how was that first period after surgery?
8:35
SPEAKER_02: How did that go?
8:36
SPEAKER_01: Awful.
8:37
SPEAKER_01: Awful?
8:38
SPEAKER_01: How?
8:38
SPEAKER_01: You want to share?
8:39
SPEAKER_00: Yeah, I just feel like after my surgery, I would have sat like at the bottom of my bed, really like contemplating changing my bag.
8:46
SPEAKER_00: I find that so difficult.
8:47
SPEAKER_00: Like I would have sat there an hour would have passed, and I was like, this is something I cannot do.
8:51
SPEAKER_00: Um so it just really took me a long time to build up like the courage to do a bag change.
8:55
SPEAKER_00: So whenever I actually had to deal with my period at the same time, I was like, there's so much going on in like that small area.
9:03
SPEAKER_00: Um and obviously like using tampons, I was like, I just feel like my body is just literally just going through the wars at the minute.
9:10
SPEAKER_00: Um as well, I don't know if it's after my surgery, but I feel like I would get like a lot of phantom pains.
9:16
SPEAKER_01: Yes.
9:17
SPEAKER_00: I don't like I do feel like now when I'm on my period, that's a lot worse.
9:21
SPEAKER_00: Um I know a lot of myelceratic clitis is in my rectum anyway.
9:24
SPEAKER_00: Um so my disease is still very active there, so I don't know if that makes it worse when I'm on my period.
9:29
SPEAKER_00: But yeah, I'd you deal with that?
9:33
SPEAKER_00: Cry.
9:34
SPEAKER_00: Yeah, a lot of time, like I do spend like a lot of time just sitting in the toilet.
9:38
SPEAKER_00: Like even my partner will be like, You're you're just sitting in the toilet, but sometimes I do that to feel normal, obviously with having a stomach.
9:44
SPEAKER_00: Um like I just feel like when I go to the toilet as well, I still pass like a lot of mucus and um and go on to until I get my second surgery, which is normal.
9:52
SPEAKER_00: Um so yeah.
9:54
SPEAKER_00: Did any of you get told about rectal discharge?
9:57
SPEAKER_04: Yeah.
9:58
SPEAKER_04: Um so th and I was told it was really normal.
10:02
SPEAKER_04: Yeah.
10:02
SPEAKER_04: Um and for a year after my surgery I like had it quite a bit and it was the colour that it should be.
10:08
SPEAKER_04: And then my disease came back in my rectum, and then it was what I noticed every time I had my period, I would have blood from my rectum.
10:20
SPEAKER_04: And it was like, oh my goodness, all these symptoms are back now.
10:23
SPEAKER_04: And then I note you would notice a pattern where every time it was my time every month, my my symptoms were worse.
10:32
SPEAKER_02: Gosh.
10:33
SPEAKER_02: What about you, Joe?
10:34
SPEAKER_02: You're a bit different, aren't you, with all this?
10:36
SPEAKER_03: Yeah, so I was told that there was a chance that I still carry on getting some discharge from my rectum after the surgery, but I had the impression, and I don't know whether it's just the impression I took from what I was told rather than what I was actually told, um, that that was there was a chance.
10:52
SPEAKER_03: Didn't sound like it was a big chance, and that it would probably write itself within a matter of a few weeks.
10:57
SPEAKER_03: That was what I'd understood.
10:59
SPEAKER_03: But it didn't, it it continued until I did have the barbie butt surgery, which I I had a couple of years later.
11:05
SPEAKER_03: But I also felt a little bit um hoodwinked because I'd had the surgery to make my make me better, and I felt like I had a stoma bag and still a lot of the symptoms that I'd had before I'd had the surgery.
11:18
SPEAKER_03: It felt like I had a bit of the the worst of both worlds for a little while until until I'd had the kind of second surgery.
11:24
SPEAKER_04: Yeah.
11:25
SPEAKER_04: And it's bonkers, isn't it?
11:26
SPEAKER_04: Because you think you've got a stoma bag, you've still got active UC in your rectum, and then a period sprinkled on top.
11:33
SPEAKER_04: And like and people must just think like, oh my goodness, how are you how are you doing all that?
11:38
SPEAKER_04: And the truth of it is because we have to, we have to put your hands on and we've got to go, which we've done for like ever since we were diagnosed with this awful disease.
11:49
SPEAKER_04: And I just think unfortunately, when you do speak to a consultant or something, there is that expectation where look, you've just got to get on with it.
11:58
SPEAKER_02: Yeah, yeah, and yeah, and that sucks.
12:00
SPEAKER_02: It does.
12:01
SPEAKER_02: Because that's not what you want to hear, is it?
12:03
SPEAKER_02: And I I don't know, if you're having a day where your output is more, and then if you're on a heavy period from ha from having two kids, my periods are so heavy.
12:13
SPEAKER_02: I don't know whether it's a combination of surgeries or pregnancy or whatever, but they are crazy heavy.
12:18
SPEAKER_02: I feel like I've been stabbed for three days.
12:20
SPEAKER_02: It's they're shorter, but they're so intense in the pain.
12:23
SPEAKER_02: And then when you're, I don't know, when you shower or whatever, but at the end of the day, if I'm having a shower and I've got to psych myself up to go, right, now I've got to change my tampon.
12:34
SPEAKER_02: Now I've got to sort a pad out, now I've got to change my bag.
12:37
SPEAKER_02: And I feel like my other half is just going in the shower, into bed, oh done, that was oh, and then I'm like, it's an hour routine.
12:44
SPEAKER_02: Yeah.
12:45
SPEAKER_02: And I've got to psych myself up for it.
12:47
SPEAKER_02: And it's draining.
12:49
SPEAKER_02: It's so draining.
12:50
SPEAKER_04: And I think it does go back to because I was thinking, like, how do we properly look after ourselves around our period?
12:56
SPEAKER_04: And then I was thinking, do you know what?
12:57
SPEAKER_04: I actually don't know much about a woman's cycle.
13:01
SPEAKER_04: And I think it goes back to being in like high school and in school.
13:04
SPEAKER_04: Like my mum taught me about periods, but she taught me very much like that base layer of you have a period, this is why, this is how you cope with it.
13:13
SPEAKER_04: Like in school, we aren't told about the cycle and what happens at each stage of the cycle and how to care for ourselves around that cycle.
13:20
SPEAKER_04: And then you have a stoma bag and they've messed with all your insides around that area.
13:25
SPEAKER_04: And again, like how do you care for yourself when you're going through something that every woman has to go through?
13:31
SPEAKER_04: And I feel like that basic knowledge is lacking in education.
13:35
SPEAKER_04: Yeah.
13:35
SPEAKER_04: Because we aren't told about the different cycles, how our hormones rage and then drop and what we need.
13:40
SPEAKER_04: And yeah, and I think it's really important.
13:42
SPEAKER_04: I think it does go back to that.
13:43
SPEAKER_04: I wish I knew every stage of the cycle.
13:45
SPEAKER_04: I'm not even confident now that I could tell you.
13:48
SPEAKER_04: And like I've had a period for so many years, and I think, yeah, I think it goes back to that, like learning about it and how to look after ourselves at each stage.
13:56
SPEAKER_02: Yeah, no, that's really valid.
13:58
SPEAKER_02: And I suppose there are lots of apps now, aren't there?
14:00
SPEAKER_02: There you can track things and your symptoms and all that.
14:03
SPEAKER_02: But I don't know about you guys, but I find all the apps you could use, all the supplements, all that I find it quite overwhelming.
14:11
SPEAKER_02: And I don't know where to start, I don't know what to use, and then you've got people advertising all this stuff, and then you're like, oh, do you actually like it?
14:19
SPEAKER_02: Or is it because you're getting paid?
14:20
SPEAKER_02: And it's like, oh, it's it's a lot, isn't it?
14:23
SPEAKER_02: And when you're on social media sharing about stuff like us, our feed is naturally going to curate it so that you are shown all of this stuff.
14:31
SPEAKER_02: So I mean, what tools do you guys use, if anything, to track?
14:35
SPEAKER_02: Do you use any apps?
14:36
SPEAKER_02: Do you use anything like that?
14:38
SPEAKER_00: I use flow.
14:40
SPEAKER_00: Oh, yeah, yeah.
14:41
SPEAKER_02: But and saying that I use it, and then sometimes I actually don't log my period or I actually connect something ever new.
14:48
SPEAKER_02: And then also it's another thing you've got to do.
14:51
SPEAKER_02: Do men have to track something all the time?
14:54
SPEAKER_02: Are they doing this?
14:55
SPEAKER_02: Men in the picture, are you doing this?
14:57
SPEAKER_02: I I don't think Keith has ever mentioned that he tracks something every month.
15:00
SPEAKER_02: I don't think he does.
15:02
SPEAKER_02: Um it's just exhausting, isn't it, being a woman?
15:04
SPEAKER_04: I feel like I don't know if anyone else feels like this, but I feel like I'm at a certain age and a certain point in my life now, and I feel like I do have like a ticking time bomb with certain things.
15:15
SPEAKER_04: And I feel like certain people I know came off contraception, started really like tracking their periods, and I felt like, oh gosh, I I need to do that as well.
15:24
SPEAKER_04: So it's like trying to make sure there is that 30-day window, and if it doesn't, isn't that 30-day window, is that because I have a stoma bag or is that just because Mother Nature didn't bring it then?
15:35
SPEAKER_04: And I just think there's all that underlying anxiety anyway with being a woman, and then I think with the stoma bag on top and what they've done to my insides, there's always that added anxiety of will the things that I want to happen in the future happen as easily as I'd like them to.
15:54
SPEAKER_02: And fertility is a big topic, and we had a lot of followers asking about it, and it it can affect fertility, and people can really struggle as a result from these surgeries.
16:04
SPEAKER_02: Um, and they just seem there there isn't a massive amount of support out there, and that's where it's great that we have this online community, people can reach out to each other, and you just mentioned about contraception.
16:15
SPEAKER_02: I mean, I know I I've had GP appointments in the past where I've had to tell them that I can't absorb the pill, and that's not that's their job to know, and unfortunately, a lot of GPs don't know that.
16:29
SPEAKER_02: What's your experiences with things like that?
16:32
SPEAKER_00: Um, I'm actually still on the pill, and but no one's actually ever told me that I can't absorb it or like told me like just the precautions that come with having a stomach.
16:41
SPEAKER_02: Yeah.
16:41
SPEAKER_00: Um I just know whenever I first got my stomach surgery, I was very in the way of wanting to get um a reversal.
16:49
SPEAKER_05: Yeah.
16:49
SPEAKER_00: So whenever I actually met with the surgeon discussing this, um he was the one that kind of told me all about that and told me, you know, that after having my stomach surgery, I will have like a small window as to when like maybe get married, have children, and then go for a reversal or um keep my stomach bag just because he said that it could affect fertility and it's safer to try and do all this before getting a second surgery.
17:14
SPEAKER_00: But I was like, it's just hard for someone to put a time on it for you.
17:17
SPEAKER_00: Um and even now, like I know I'm getting married this year, and then hopefully if we're lucky enough we could look into having children, but it's not nice knowing that I'm in my own head, I'm like, you know, I maybe have like two years left before I should really get a second surgery, and then I'm also gonna possibly, if I'm lucky enough, have small children to think about while also being off my feet after having my second surgery.
17:37
SPEAKER_00: And it's just so much to process.
17:39
SPEAKER_02: Yeah, and I suppose that's kind of like they're dictating your life in a way.
17:44
SPEAKER_02: Your that's not any of your choice, is it?
17:47
SPEAKER_02: And then that's gonna have an impact on your relationship, and you've got to have these big discussions, and there's a lot, you know, a lot of there's not really the chance to be spontaneous with anything, then is there?
17:58
SPEAKER_02: You like you said, it's a ticking time bomb.
18:00
SPEAKER_02: Um there's so much pressure, yeah, isn't there?
18:03
SPEAKER_02: So much pressure.
18:05
SPEAKER_02: Um and then another question we had from the followers was about post-surgery and confidence.
18:12
SPEAKER_02: And I mean, there's so much to cover here, you know, the way you dress, the way you carry yourself and getting back out there.
18:20
SPEAKER_02: Um I know for you, you're a teacher when you were having the surgery, and that's that, you know, you you can't hide behind a desk with that, can you?
18:28
SPEAKER_02: You are frontline, you are there.
18:31
SPEAKER_02: How did you deal with all that?
18:33
SPEAKER_04: Um, so the head teacher of the school that I worked at was amazing when I was off, and it was very much you take the time that you need.
18:40
SPEAKER_04: And I I also felt guilty when I was off for going out and doing things, but he was very much like, no, you need to go out, you need to be in those public spaces.
18:49
SPEAKER_04: Because changing your bag at home or emptying your bag at home is one thing, but doing it in a public space where you've got people outside queuing up, and I was thinking this could happen in my work situation.
19:00
SPEAKER_04: So he was great, and I went back to work on a phase return, but it was like teaching, you go back, you hit the ground running.
19:08
SPEAKER_02: Yeah, you can just chill for a bit and dip your toe into it.
19:11
SPEAKER_04: And I remember thinking one day, my bag's full, I haven't marked those books, I'm on duty, when am I going to empty my bag?
19:18
SPEAKER_04: And it just all got a bit it it all got too much, and I remember like getting quite teary and being like, Why do I have to do all this?
19:25
SPEAKER_04: Why because I was looking at other teachers and I was thinking, oh, they don't have a bag of poo attached to them, like and they've got all these other things.
19:32
SPEAKER_04: But then I just think again, you just you have to get on with it, and like you do have to pull your big girl pants on, and and then and after a while it does just become the norm and you learn to cope with it.
19:45
SPEAKER_04: Um, but I would say again, like my social media has been a massive like support for me, even being able to help other people, but like other people being able to help you and just sharing, and then people going, Oh yeah, I have these same worries as well.
20:00
SPEAKER_04: And I think thank goodness it's not just me.
20:02
SPEAKER_02: Yeah, and and the and the problem is everyone who has a stoma, it doesn't mean you're all the same.
20:07
SPEAKER_02: No one's stoma is the same.
20:09
SPEAKER_02: The reasons we've all had one is even if it might be the same disease, it's still going to be slightly different.
20:15
SPEAKER_02: So there's no one size fits all, is there?
20:18
SPEAKER_02: Like some people might have problems with medication because they can't absorb it, whereas other people might be fine.
20:23
SPEAKER_02: And there's that's the struggle, isn't it?
20:25
SPEAKER_02: But then when you do find people that you do find things similar in, isn't it like, for instance, we met for coffee a couple of weeks ago.
20:33
SPEAKER_02: You popped up on my feed.
20:35
SPEAKER_02: I was like, oh, she's local, and and how joyous was that.
20:39
SPEAKER_03: It was lovely, wasn't it?
20:40
SPEAKER_02: It was very lovely.
20:41
SPEAKER_02: We just gnatted nonstop.
20:43
SPEAKER_02: I mean, we talked a lot about, you know, uh well, pre-divorce and things like that.
20:48
SPEAKER_02: It was it was everything, and it wasn't just stomas.
20:50
SPEAKER_02: And I think when you connect with people, you assume you're just gonna talk about your stoma, but when you get that connection, you end up it's so much more, isn't it?
20:59
SPEAKER_02: And it's like, for instance, like you and Summer, Summer's one of our ambassador, you're quite close to Summer, aren't you?
21:04
SPEAKER_02: She was my stoma sister, yeah.
21:07
SPEAKER_02: And and how much of when you are together, do you actually speak about your stoma?
21:11
SPEAKER_04: Like, not even that much now, because we just have that connection.
21:16
SPEAKER_04: It's just like we're just the same person copied and pasted, but she's blonde and I'm brunette.
21:21
SPEAKER_04: Yeah, yeah.
21:22
SPEAKER_04: But then like those moments where I'm like, oh god, it's itchy, and she's like, and you've got someone who can go, oh my god, I hate that, instead of going, Oh, is it when other people don't understand it?
21:32
SPEAKER_04: Yeah, like you just meet people that get it and it's just if you want to adjust, yeah.
21:36
SPEAKER_02: Or, you know, if you wanna, yeah, get you know, I don't know, like if you you know, if you're out in a restaurant or something, or I don't know, you wanna talking like I'm out all the time, I don't get out much.
21:45
SPEAKER_02: That was a rarity.
21:46
SPEAKER_02: Thank you.
21:47
SPEAKER_02: Um no, but like, you know, if you just need to do something that you know isn't typical, but if you're with people like that, it just feels so much better, doesn't it?
21:56
SPEAKER_02: Um, like our get togethers.
21:57
SPEAKER_04: Yeah, and you don't have to take extra stoma supplies.
22:00
SPEAKER_04: Because I'm thinking, well, summer's got us covered.
22:02
SPEAKER_04: Or I've got us covered one day.
22:04
SPEAKER_04: You take that small bag that you wanted to take out.
22:07
SPEAKER_04: I'll chuck the stone with supplies in.
22:08
SPEAKER_04: Yeah.
22:09
SPEAKER_02: So yeah, just having your people who get you.
22:12
SPEAKER_02: Um how was your confidence when you'd had your surgery, Aisha?
22:16
SPEAKER_02: Like how how did it affect your day-to-day life and what did you do to try and get I mean, you you are at a such a completely different stage now, but how did you get to here?
22:26
SPEAKER_02: I think that's what a lot of people were asking is finding that confidence.
22:30
SPEAKER_00: Yeah.
22:31
SPEAKER_00: I remember like before my surgery, I would have been quite confident.
22:34
SPEAKER_00: Like I would have been at the gym constantly, like watch why air, like I was confident in my own body.
22:39
SPEAKER_00: Um and then after surgery, I was like, oh my goodness, like I'll never be able to show people my body again.
22:44
SPEAKER_00: Like I'll not post a bikini picture, like I'll just hide behind, hide in the house forever.
22:50
SPEAKER_00: Um but yeah, I just feel like I didn't think I'd be able to wear tight clothes ever again.
22:55
SPEAKER_00: Like I was worried about going back to work.
22:57
SPEAKER_00: I work in an office, so I was like, I'll not be able to wear office clothes, like everything will be baggy, like I'll just have to completely change my wardrobe, change my style, everything about me.
23:06
SPEAKER_00: Um and then when I felt well enough, and I I must have taken about three months off work, when I was due to going back, I tried on some of my old stuff and I was like, oh wow, like this still fits, like you can't really see my bag, like this is quite comfortable.
23:20
SPEAKER_00: Um and then I was like, you know, I could just bring an extra pair of chargers in my car, um, extra supplies to work in case of a lake, that sort of thing.
23:28
SPEAKER_00: And then I got into like a good mindset of being like, I can do this, like this is like adaptable.
23:34
SPEAKER_00: Um, but I do remember my first week back to work, I actually had a lake in the office that day.
23:39
SPEAKER_00: Um, went to the disabled toilet, and I was like, what do I do?
23:42
SPEAKER_00: So I had to like just do a full change.
23:44
SPEAKER_00: And I was like, you know what, I'm just gonna have to like grin and bear it, like just pretend I can just continue on with today.
23:49
SPEAKER_00: And it kind of does set me back, but I think you need to have that experience to kind of know how you're gonna deal with it.
23:55
SPEAKER_00: So but luckily enough, like I do remember after my surgery, like stoma nurses, doctors, everyone was like, you know, be prepared to have lakes during the night.
24:04
SPEAKER_00: I don't know about you guys, but I've never had a lake overnight.
24:07
SPEAKER_00: Um I feel like my stoma isn't very active at night, so I can probably get a good 78-hour sleep um without emptying it.
24:16
SPEAKER_00: And one of my questions actually on Instagram from one of the followers was how to get a good night's sleep without any lakes, which I actually can't relate to, but I'm not sure if you can.
24:25
SPEAKER_00: Yeah.
24:26
SPEAKER_04: I'd love a full night's sleep.
24:28
SPEAKER_02: Me too.
24:28
SPEAKER_02: That's that again, that's something that's so different for everyone.
24:32
SPEAKER_02: Like I can I'm in your band, um, but you guys completely opposite.
24:38
SPEAKER_03: Yeah, I mean I'm up at like four o'clock every morning emptying the bag, so it's very, very rare for me to make it through to like six o'clock before I'm having to get up, but you know, it's just part of an evening routine now.
24:50
SPEAKER_03: Had a couple of leaks at night time fairly early on, but fortunately not since then.
24:55
SPEAKER_03: But it's the it's kind of waking up without pressure on your tummy.
24:59
SPEAKER_02: And I suppose that I don't know, I like that fear of, oh my god, it's massive, oh my god, it must have leaked, oh my god, and then you're like, Yeah, I'm just gonna touch that, I'm just gonna see if it's wetness, I'm gonna die.
25:10
SPEAKER_02: And then you're oh you know, just oh my god, it's fine, it's fine, it's fine.
25:14
SPEAKER_02: Or like say, if I'm having a cutcher Luke and I'm like, oh my god, is it on him?
25:18
SPEAKER_02: Is it on him?
25:19
SPEAKER_02: Oh my god, what am I gonna do?
25:20
SPEAKER_02: How am I gonna and then it's fine, it's fine.
25:23
SPEAKER_04: Like it's oh god, yeah, it's yeah, I can't honestly, I can't even like remember the last time I had a full night's sleep.
25:31
SPEAKER_04: Like I'm sat here now with raging jealousy.
25:34
SPEAKER_04: Um so happy for you.
25:37
SPEAKER_04: Yeah, but uh yeah, I think it is I have to have like to change my routines throughout the day to try and help with that.
25:45
SPEAKER_04: So I will try and not eat after six o'clock at night.
25:49
SPEAKER_04: But then again, saying that life gets in the way.
25:51
SPEAKER_04: We should get the midnight munchies.
25:53
SPEAKER_04: Exactly.
25:53
SPEAKER_04: What do you do then?
25:54
SPEAKER_04: I want a cup of tea while I'm watching the traitors, you know.
25:56
SPEAKER_04: Yeah, um, and it goes out the window.
26:00
SPEAKER_04: But I do do things to try and stop it, but again, I feel like I've just learned to cope with the fact that I get up quickly in the night.
26:08
SPEAKER_04: I am thankful that I get back to sleep quite quickly.
26:11
SPEAKER_04: And it's just not like a quick run to the toilet, empty, back to sleep.
26:16
SPEAKER_02: Yeah, but I mean, and I suppose those moments where like, so I've got a one-year-old, and I'm if I'm up in the night with him, then he sleeps sometimes for the night, sometimes he doesn't.
26:26
SPEAKER_02: But I will empty my bag if I'm awake anyway, because I'm like, well, at least then I know I shouldn't have to get up again.
26:32
SPEAKER_02: But there's that kind of half-awake bag emptying that's always a wild ride, isn't it?
26:38
SPEAKER_02: When you're like stumble into the toilet, you're like, oh, trying to like, I suppose, talk yourself to trying to open your eyes enough to just even open it properly and not get it on the floor and to get it in the toilet, yeah, and to and then not have that extra level of anxiety that you're like, I haven't had enough sleep, tomorrow I'm not gonna be able to function.
26:59
SPEAKER_04: Yeah.
26:59
SPEAKER_04: Oh my goodness, my mind's gonna have brain fog in work, and I just think, oh, it's like another thing to worry about.
27:05
SPEAKER_04: But yeah, but I think again, you just learn to cope with it.
27:10
SPEAKER_02: Yeah.
27:10
SPEAKER_02: I mean, we touched upon clothes there a bit.
27:13
SPEAKER_02: I mean, how about you guys?
27:14
SPEAKER_02: Has your sense of fashion and the way you dress changed since you've had your surgery?
27:20
SPEAKER_04: I feel like I've maybe come full loop.
27:24
SPEAKER_04: When I had my surgery, I binned everything.
27:27
SPEAKER_04: I was too scared to wear my jeans.
27:29
SPEAKER_04: I binned them all.
27:30
SPEAKER_04: Now I look back and I'm like, oh, I wish I still had them.
27:33
SPEAKER_04: Oh, gosh.
27:33
SPEAKER_04: Because I feel like I've I've gone on like a journey where I've tried baggy and then started to come back, and I'm like, no, I'm gonna wear now what I want to wear, not what I think I should wear with a stoma.
27:46
SPEAKER_04: Whereas I that like my stoma pretty much decided what I wore at the beginning, but now I wear what I want to wear.
27:54
SPEAKER_04: Yeah.
27:54
SPEAKER_04: So I feel like I have come full circle, but it was a struggle.
27:58
SPEAKER_03: Dressing for the day you want, isn't it?
28:00
SPEAKER_03: Yeah, it's that kind of psyche.
28:02
SPEAKER_03: Yeah.
28:02
SPEAKER_03: I spent definitely after the surgery, spent a lot of time in leggings and big baggy jumpers and thought that was gonna be my wardrobe forever.
28:09
SPEAKER_01: Oh, look at you now!
28:12
SPEAKER_03: So so yeah, that it but it took quite a bit of time, and like you, I threw away everything thinking, well, I'll never wear that again.
28:18
SPEAKER_03: And there are some things that I still wouldn't feel comfortable in.
28:23
SPEAKER_03: You know, I'm I I feel like I'm probably always gonna be in a high-waisted bikini now, but then I am a lady of a certain age now, so you know I might be in that space anyway.
28:33
SPEAKER_03: Um so uh so yeah, but there there's some things, but most of my clothing are completely back to how I would have dressed before, or at least being open to anything I would have worn before.
28:44
SPEAKER_02: Oh, and and and some people kind of find that in some ways they have more confidence than before they had their stoma.
28:51
SPEAKER_02: I found Is anyone like that?
28:53
SPEAKER_03: Yeah, definitely.
28:54
SPEAKER_03: So in so so I've got I had two cesareans with my two children.
28:59
SPEAKER_05: Okay.
28:59
SPEAKER_03: And my stoma bag actually covers up my caesarean scar, or at least part of it.
29:04
SPEAKER_03: Jammy.
29:05
SPEAKER_03: So I'm like, well that's Did you pay him for it?
29:08
SPEAKER_01: Did you did it just that was luck?
29:10
SPEAKER_03: I think it's just it sort of detracts from it.
29:12
SPEAKER_03: Before I had the stoma bag, I was worried about my caesarean scar.
29:15
SPEAKER_03: Now I've got a stoma bag.
29:17
SPEAKER_03: Absolutely worries you.
29:18
SPEAKER_03: Nobody notices the caesarean scar, isn't it?
29:20
SPEAKER_03: That's definitely the stoma bag that takes precedence.
29:22
SPEAKER_03: So it's made me less worried about lumps and bumps in the wrong places because it kind of it that is the main event.
29:31
SPEAKER_02: But it takes so much time, doesn't it, to get to that point.
29:35
SPEAKER_01: Yeah.
29:36
SPEAKER_02: And some people is it fits, I think there are some people that take years, like some people just don't fully get there, and I and that's okay.
29:45
SPEAKER_04: And I feel like on social media as well, I feel like people would look at my page and be like, wow, she doesn't care, she just goes out.
29:52
SPEAKER_04: But I do have those thoughts.
29:54
SPEAKER_04: Who am I going out with?
29:56
SPEAKER_04: So my confidence I think goes up and down depending on who I'm going out with.
30:01
SPEAKER_04: I mean, I was petrified of my fiance's friends finding out that was the worst I that they were people that I didn't want to know.
30:11
SPEAKER_04: Not because they would say anything, but because I felt embarrassed of how Zach would feel with people knowing.
30:18
SPEAKER_04: And he didn't care.
30:20
SPEAKER_04: But it's funny that now even if we go out with certain people, I will choose to wear something that if my bag does full up, I can hide it a bit more.
30:29
SPEAKER_04: Whereas if I'm really comfortable around people, it's it I don't give it a second thought.
30:34
SPEAKER_02: Yeah, so I mean we're all we've got married, engaged, engaged, engaged, weddings this year.
30:41
SPEAKER_02: Weddings this year.
30:42
SPEAKER_02: Yes, wedding next year.
30:44
SPEAKER_02: Um and it we were all in relationships when we had our surgeries.
30:49
SPEAKER_02: Um and there are but unfortunately there are people that I mean I think they're there's a lot of chat on support groups there.
30:56
SPEAKER_02: There are people in relationships where they're not accepted for their stoma.
31:00
SPEAKER_02: And I know you three, that wasn't the case for you guys, it's all very positive.
31:06
SPEAKER_02: Um, but it still doesn't mean that it wasn't difficult for you and it hasn't taken you some work and some time and some but yeah, after your surgery, I mean, how did how did it, if it did change things, and did you have a conversation about that and how it would work?
31:23
SPEAKER_00: Um I remember whenever I found out I was getting the surgery, um, my fancy he was at work and he was coming up to see me that evening that evening um and we were in the process of getting our house, um, mortgage had been approved, we were literally waiting on the date to move in.
31:37
SPEAKER_00: So he he came up to hospital that evening and I said like we at that time we had been together maybe five years.
31:45
SPEAKER_00: Um and I said, like, you know, if you want to leave me now, I totally understand.
31:49
SPEAKER_00: Like, there's no bad blood.
31:51
SPEAKER_00: Like, I just felt in that moment, like, so worthless.
31:54
SPEAKER_00: Um, I was like, if you don't want to move me, I totally understand.
31:57
SPEAKER_00: I was like, I know we're in a process of getting a house, like I know there's so much going on, but like this is such a big deal and it's life-changing, and I just don't want to hold you back.
32:04
SPEAKER_00: Like I don't want you being like seeing me differently, like you know, just having like I was going for it and I felt like he was going for it as much as I was.
32:11
SPEAKER_05: Yeah.
32:12
SPEAKER_00: And then he was like, in that moment, he's like, I can't believe you just said that.
32:15
SPEAKER_00: Like, it's not a second thought, like I still love you for who you are, this isn't gonna change anything.
32:19
SPEAKER_00: And I just think I was so shocked at his reaction.
32:21
SPEAKER_00: I was like, wow, like maybe, like, maybe I still do have a chance.
32:25
SPEAKER_00: Like, you know, honestly, I can't even explain like how I felt in that moment, but yeah, I just feel so lucky.
32:30
SPEAKER_00: Like, even I know at the time, like the doctors and all had said about possibly having Lakes for the night, and I was like, if that's gonna annoy you, like I'm so sorry, like we had bought like mattress protectors, that sort of thing.
32:41
SPEAKER_00: Um, but he's always been so understanding and like there's been times that I don't know if he's experienced this, but sometimes if I get a shower, I'm about to step out the shower and my bag just bricks.
32:50
SPEAKER_00: It just like, yeah.
32:52
SPEAKER_00: And I'm just like, oh my goodness, then I'll have to go in for like a second shower and then I'll maybe like call him to be like, Can you bring me in supplies?
32:57
SPEAKER_00: Like that sort of thing.
32:58
SPEAKER_00: But I feel like he just rides the waves like as much as I do, and he's never like I just don't feel like he's ever looked at me differently.
33:04
SPEAKER_00: Or and then even whenever we got engaged, I was like, You do remember I have a stomach bag, like if you're I was like, if you're putting a ring on it, like you know, and we're gonna get more, like this is forever, like I'm gonna have children while having a stomach bag as well.
33:17
SPEAKER_00: Like, um, but yeah, and he's just like plays wise up, like he's like, it's not it's not even worth talking about, and I'm like, oh wow, like that is just so yeah, I don't I just think I'm in awe of his reaction, which I think probably does give me more confidence and makes me yeah just makes the whole journey easier, like the journey of acceptance.
33:33
SPEAKER_02: Yeah, and I and it does affect your partner, yeah.
33:36
SPEAKER_02: I mean, not physically the way it affects you, but they are part of it and they've got to live it with you.
33:42
SPEAKER_02: So it is important to have then discussions.
33:44
SPEAKER_02: How did you breach those conversations?
33:47
SPEAKER_03: Um Warren, my husband, was just super reassuring through the whole thing, and I'm so grateful for that.
33:55
SPEAKER_03: It was the the challenge was with me more than it was with him, or at least that's how it felt to me, which was good.
34:00
SPEAKER_03: Um so yeah, he was very keen to make sure that I felt still wanted and that he was very supportive, very reassuring about everything.
34:11
SPEAKER_03: Did things to make sure that I kind of felt comfortable and um you know checked in and that kind of thing.
34:16
SPEAKER_03: So you know it was for me, I found it harder, I found it really difficult.
34:23
SPEAKER_03: Um but but he he was a really good support through all of that for me, which was which was amazing.
34:30
SPEAKER_04: Yeah, how about you, Shaq?
34:32
SPEAKER_04: Yeah, I feel like when I was listening to you then, Aisha, it was it he was amazing.
34:37
SPEAKER_04: He was it was very similar though.
34:38
SPEAKER_04: I remember saying to my mum, oh my god, I think he's gonna leave me, he's gonna leave me.
34:43
SPEAKER_04: And we'd just bought a house as well, and we were renovating it.
34:47
SPEAKER_04: And then I just the whole process, he was just there every step of the way.
34:52
SPEAKER_04: And even when I used to say, What do you think of me now with a stoma bag?
34:58
SPEAKER_04: He still to this day says, I love you even more because of your stoma bag because it's made you you again.
35:04
SPEAKER_04: You're we're able to do all the things that we love because of your stoma bag.
35:08
SPEAKER_04: You're still here because of your stoma bag.
35:09
SPEAKER_04: I'd never hate something that kept you alive.
35:12
SPEAKER_04: Um, but I do get so many messages asking about when I've got a new boyfriend, when should I tell them?
35:19
SPEAKER_04: And I I will admit I struggle answering them because I had such an amazing support there.
35:25
SPEAKER_04: But one piece of advice I do give is I found the transition into living with a stoma bag with Zach easier because of the openness and the conversations.
35:37
SPEAKER_04: I chose to have those conversations and I brought it up a lot and it became normal very quickly.
35:44
SPEAKER_04: And so my one piece of advice for someone who has a new partner is to be open and honest and talk about it.
35:52
SPEAKER_04: I'd say from the get-go, because you don't want it to feel like something that you're hiding.
35:57
SPEAKER_04: It shouldn't feel like that, it shouldn't feel like a hidden, embarrassed secret.
36:02
SPEAKER_04: It should just feel it's you, it's your normal, and anyone who is the right person won't even bat an eyelid at it.
36:09
SPEAKER_02: Yeah, but unfortunately as well, I think when you do have something life-changing like this, it can also highlight people that aren't the right person.
36:18
SPEAKER_02: And you know, I've talked about I was married before, and that it showed that that person wasn't the right person, and I won't go into too much detail, but I credit my stoma for shining a light on that and getting me to where I am now with someone who is what sounds like your people.
36:38
SPEAKER_02: But I was I did date with a stoma as a single mum, and I I did find that a bit how do I do this?
36:47
SPEAKER_02: Do I the apps, my god, the apps?
36:49
SPEAKER_01: I mean, did you guys ever you know?
36:51
SPEAKER_01: You went to the apps, didn't you?
36:53
SPEAKER_01: No, you were you got to skip past that.
36:56
SPEAKER_02: My god.
36:56
SPEAKER_02: Thank goodness the apps.
36:57
SPEAKER_02: And for when I felt way too old to be on the apps, and then when you're a single mum, you feel like, oh my god, no one's gonna want to bat an eyelid.
37:05
SPEAKER_02: But luckily I met Luke in work, so it was fine.
37:08
SPEAKER_02: But I did dip my toe in the apps, and if for people that, you know, people were saying about dating and stuff, and they've asked me before, I said, just put it on your profile.
37:17
SPEAKER_02: You know, if you it's so it's such uh a daunting thing to potentially want to tell someone new.
37:25
SPEAKER_02: And if you put it on your profile, you've done it.
37:28
SPEAKER_02: You you you know, they can talk to you about it if you're open to doing it.
37:32
SPEAKER_02: And I think I even put my Instagram handle on it and just said, look, I'm an ostomate, this is my page.
37:39
SPEAKER_02: That's it, you know.
37:40
SPEAKER_02: And if people didn't want to know or it wasn't their thing, bye-bye.
37:43
SPEAKER_02: And it kind it really does sort out the frogs.
37:46
SPEAKER_02: Yeah, yeah, it really does.
37:48
SPEAKER_02: Um now I'm gonna go over to intimacy, and for the men's specials, they really did, you know, share a lot and they were quite vulnerable with it.
37:58
SPEAKER_02: But I suppose as a woman, we have different tools to work with, so we're not gonna have the same things going on, but that first time you're intimate with your partner after surgery, oh, just you know, the things that are going through your mind and how you navigate that.
38:13
SPEAKER_02: I mean, what advice would you have?
38:15
SPEAKER_02: That's a massive, massive question, I know, but I was terrified.
38:21
SPEAKER_04: Absolutely terrified.
38:22
SPEAKER_04: Um I think there was the mental aspect where I still didn't feel like me.
38:29
SPEAKER_04: I didn't ever think I'd be able to feel sexy again because I had a bag of poo attached to my tummy.
38:34
SPEAKER_04: And then there was the physical side where I didn't know if I was gonna hurt myself because I hadn't had the conversation with any professional that said, look, you can you can become intimate after six weeks.
38:48
SPEAKER_04: So I kind of went on the fact that I wasn't allowed to drive a car for six weeks.
38:53
SPEAKER_04: So I feel like that told me like they're on a drive again.
39:00
SPEAKER_04: I shouldn't have sex if I can't drive a car for six weeks, then I shouldn't have sex for six weeks.
39:04
SPEAKER_04: Um and I just remember thinking, I don't I don't know if I enjoy I wouldn't say I enjoyed the first time I did it after surgery because there was so much going on in my head.
39:14
SPEAKER_04: But yeah, I did just the one piece of advice I would say is like like I was so open about how I was feeling with Zach.
39:22
SPEAKER_04: And we we were like having conversations throughout the whole thing, and we were like giggling at certain points, and I just think that like it's it's a human normal thing to do.
39:31
SPEAKER_04: Yeah.
39:32
SPEAKER_04: But you've got all these added bits, and just to be really like open and honest about how you're feeling.
39:37
SPEAKER_02: Yeah, what about you, Jo?
39:39
SPEAKER_03: I think for me, I'd been quite poorly um for quite a while beforehand, and so that brought its own challenges anyway.
39:48
SPEAKER_03: And so when I had the stoma, having a bag was a different challenge, you know, which I had all sorts of feelings about in all sorts of different ways, you know, your relationship with food and your body image, your body confidence.
40:03
SPEAKER_03: Um so it was another thing, it was another kind of challenge to get over.
40:08
SPEAKER_03: But it was just a sort of different challenge to the challenge that I'd had, we'd had for the several months leading up to that, where I'd just been really poorly.
40:16
SPEAKER_03: So it it it was a different, a slightly different thing to navigate.
40:19
SPEAKER_03: Um but again, just being open, I found it difficult to talk about, I found it difficult to approach.
40:27
SPEAKER_03: Warren was really good at approaching it and um and how he raised it and would would help and support me.
40:34
SPEAKER_03: So that just made such a difference.
40:36
SPEAKER_03: But it it's daunting, like you say, you're not sure what's gonna hurt.
40:40
SPEAKER_03: I think the nervousness, the anxiety about what might hurt makes it more likely that it does then.
40:45
SPEAKER_03: Um and um yeah, so so kind of finding a way through that, but it just you know, we'd been together for quite a long time, we were already married, um, we had that really close bond.
40:58
SPEAKER_03: We you know, we were able to be quite open with each other and that really made a difference.
41:02
SPEAKER_03: Yeah.
41:02
SPEAKER_03: And he'd seen me really poorly in the lead up, so he's like just quite grateful that I had the bag that was gonna make me.
41:07
SPEAKER_00: So similar thing, yeah, yeah.
41:09
SPEAKER_00: What about you guys?
41:10
SPEAKER_00: Um, I just feel like after my surgery, like mentally, I just was in a bit of a negative place.
41:15
SPEAKER_00: So like I was like, you know what?
41:16
SPEAKER_00: Like I have zero sex drive, like no ambition to do that whatsoever.
41:21
SPEAKER_00: Um, but kind of like yourself, like I was like, I'll just give it a few weeks.
41:25
SPEAKER_00: And I think initially, like when you think about it, you're like, what if it's sore?
41:30
SPEAKER_00: Like, what if something happened to my bag during it?
41:32
SPEAKER_00: Like, but again, like me and my fiance, like, we were open about all this and had plenty of conversations.
41:36
SPEAKER_00: But then I got into my own head too, where I was like, I just think I look so weird with a stomach.
41:43
SPEAKER_00: So I was like, what if he finds me like really unattractive?
41:46
SPEAKER_00: And I was definitely in my own head more than like I should have been.
41:51
SPEAKER_02: But perfectly normal and understandable, and it will it takes people such a different amount of time to get to a place where they're ready to have sex.
42:00
SPEAKER_02: And if you're really tense and you're really nervous, it's gonna make it not as enjoyable at all.
42:06
SPEAKER_02: It might hurt.
42:07
SPEAKER_02: It you your body's your body needs to be ready and wanting mentally as well for it to be a pleasurable experience.
42:15
SPEAKER_03: So uh yeah, I mean And while you're still recovering from the surgery, you're still tired, you're still sore, you're still getting on all of that as well.
42:22
SPEAKER_02: You're just I mean, you're not up for a marathon, are you?
42:24
SPEAKER_02: No, I mean you're not like come on, let's go.
42:26
SPEAKER_02: Here we go.
42:27
SPEAKER_02: We got some time.
42:28
SPEAKER_02: Let's sort yeah, it's not gonna work like that, is it?
42:30
SPEAKER_02: And it's I think um one of our fellow ambassadors said before in a podcast that one advice they were given was to wear um crotchless underwear.
42:41
SPEAKER_02: So if you don't want your bag out and you want it concealed and supported, but you you don't want to have to deal with moving underwear and trying to navigate all that, I think it's a brilliant tip.
42:53
SPEAKER_02: It's a great idea to be able to have access, have your bag secure.
42:57
SPEAKER_02: I mean, I thought that was a golden tip.
42:59
SPEAKER_02: So uh she knows who she is, and um, I won't say her name, but yes, that was a diamond tip.
43:04
SPEAKER_02: Um, and I mean, what about lingerie or support wear or anything like that?
43:09
SPEAKER_02: Or I know for me, I have my bag folded and tucked up all the time.
43:15
SPEAKER_02: So yeah, I I don't like the feeling of it down anywhere, or you know, I've had two C-sections as well, so it ain't flush down there in terms of there's a lot of bumping going on.
43:25
SPEAKER_02: So yeah, I just I don't want my bag added to that, so I I keep it in half.
43:29
SPEAKER_02: So with intimacy, it's kind of I think for me, I don't tend to think about it as much because it's not I it's weird, I can't feel it as much because it's where the base plate is.
43:39
SPEAKER_02: Where so do you guys, you know, is lingerie a big part of that, or do you wear support wear, or are you like go with the wind?
43:47
SPEAKER_04: I'd say the only thing that I'm really conscious about now is if my bag is full.
43:53
SPEAKER_04: Yeah.
43:53
SPEAKER_04: So if I feel anything in filling up at all, quick dash to the toilet.
43:59
SPEAKER_04: Yeah.
44:00
SPEAKER_04: And then I'm ready to go.
44:01
SPEAKER_04: Yeah.
44:01
SPEAKER_04: Yeah.
44:01
SPEAKER_04: That's the one thing for me because I don't like the way my bag looks if it is full.
44:06
SPEAKER_04: I only like the way I will only ever post a photo of it online when it's empty.
44:11
SPEAKER_04: Yeah.
44:11
SPEAKER_04: Um, but I am honest about that online because I I don't like the way that it looks when it's full on me.
44:17
SPEAKER_04: Um so that's something that I'm still conscious about.
44:20
SPEAKER_04: So if it if something happens spontaneously, it's always like a quick tap, maybe a quick dash, and then I'm back.
44:26
SPEAKER_02: Yeah, yeah.
44:27
SPEAKER_02: And if you've had that open conversation with your partner, then they're gonna know that's a part of it, and that's that's all good, you know.
44:34
SPEAKER_02: I suppose if you if you I don't know, if you were new and to dating and you were seeing someone and then it that intimacy became a thing and it was all new and you they were suddenly seeing you go off and all this, it would be quite, you know, it would really put a dampener on things, wouldn't you?
44:50
SPEAKER_02: So that conversation is so important.
44:53
SPEAKER_02: What about you guys?
44:55
SPEAKER_00: Um I don't really think I wear, like I don't enjoy wearing like support wear or even like I know I should when I'm in the gym or running.
45:03
SPEAKER_00: I don't really like wearing a support belt.
45:04
SPEAKER_00: I just find it makes me itchy if I sweat more.
45:07
SPEAKER_00: It just gets it.
45:08
SPEAKER_02: Yeah, and yeah, it does for some people.
45:10
SPEAKER_02: And I think when you're on social media and you see these adverts for waistbands and you see people posting with them, you could assume you have to wear one, but you don't.
45:20
SPEAKER_02: And you know, it's it you you don't.
45:22
SPEAKER_02: There's no law, there's no whatever.
45:24
SPEAKER_02: There might be some advice for certain exercises that it would help to, but you know your body.
45:30
SPEAKER_05: Yeah.
45:30
SPEAKER_02: And yeah, it's it's all relative to the person, isn't it?
45:33
SPEAKER_02: What about you?
45:34
SPEAKER_02: Because you I mean, you're you came onto Instagram with a stoma, but with fitness in mind.
45:40
SPEAKER_02: So how about you with all that?
45:43
SPEAKER_03: So for me, I much prefer my bag not moving too much, and if it does fill up during the day, there being some kind of pressure on it that stops it from from getting too large or looking too large under my clothes.
45:56
SPEAKER_03: So um when I'm working out, I do always wear support wear.
46:00
SPEAKER_03: Um when I first had my surgery, I used to wear it all the time.
46:03
SPEAKER_03: The high pants or the bands?
46:04
SPEAKER_03: The high pants.
46:05
SPEAKER_03: So the bands I felt just were never in the right place.
46:09
SPEAKER_03: I put them on in the right place and they'd move up or they'd move down and they would they just didn't stay where they ought to be.
46:13
SPEAKER_03: So that felt like a faff.
46:15
SPEAKER_03: Um but the pants uh I found really helpful.
46:18
SPEAKER_03: So it gave me confidence moving, you know, w when I first had the surgery, uh, but now I only use them in the gym.
46:27
SPEAKER_03: But I do generally prefer to have, you know, something that holds clamp it down.
46:32
SPEAKER_02: Clamp it down.
46:33
SPEAKER_05: Exactly.
46:33
SPEAKER_02: Right, so as we've already said, um Joe, you're already married, but we've got brides to be here.
46:39
SPEAKER_02: Exciting to this year, which is very exciting, and we can't not have this women's episode without talking about being a bride with a stoma bag because you know, not everyone shares about that.
46:50
SPEAKER_02: And I know Poppy, you've shared a lot on your stories about the process of choosing a dress and how you've gone about that, but so you've choked you've chosen your dress.
47:00
SPEAKER_02: I have.
47:01
SPEAKER_02: How did you navigate that and how much did your stoma bag influence your dress?
47:06
SPEAKER_04: So the day that I was going wedding dress shopping, I was an emotional mess because I felt like an idea of myself in a wedding dress pre-surgery was completely different to what I thought that I would have to pick now because of my stoma bag.
47:24
SPEAKER_04: I think that I would have picked something very different, maybe a different style, a different material.
47:31
SPEAKER_04: But I'm I was aware that on one of the most important days of my life I didn't want my stoma bag to be a main part of it.
47:39
SPEAKER_04: Having said that, once I got to the wedding dress shop, all those worries and anxieties and decisions that I thought I'd have to make, they just disappeared because I was just so in the moment and I was picking things out, and I kind of thought, no, go on, try it on.
47:57
SPEAKER_04: And I I was trying things on, and then in the end, I didn't really even give my stoma bag a second thought.
48:03
SPEAKER_04: I put the dress on, I felt amazing in it, and then I think it was either my sister or my mum was like, Well, is it okay around Bruce?
48:10
SPEAKER_04: We called the stoma Bruce.
48:12
SPEAKER_04: Is Brucey Boy okay in that dress?
48:14
SPEAKER_04: And I was like, Oh god, yeah, uh, yeah, it's fine.
48:17
SPEAKER_04: And then I thought, oh my god, thank goodness my stoma, I don't want to say didn't ruin it, but didn't take over because before I went, I felt like, oh, I'm not gonna pick a dress that I would like because of my stoma bag.
48:29
SPEAKER_04: Yeah.
48:29
SPEAKER_04: But it didn't happen like that at all.
48:31
SPEAKER_04: And I feel like it was just a really lovely moment.
48:34
SPEAKER_04: And again, because of how far I've come with my confidence in my stoma, it wasn't something that was at the forefront of my mind.
48:40
SPEAKER_02: Yeah, and there's a it at the moment it seems to just be a trend everywhere that people are having two, three dresses, you know, for each section of the day.
48:48
SPEAKER_02: Are you guys having more than one dress?
48:51
SPEAKER_00: I think I maybe will in the evening time.
48:53
SPEAKER_00: Um the dress I've picked, I I don't know.
48:57
SPEAKER_00: Like I had gone to a few different dress shops, and then the last one where I picked my dress, I went for a style that I could have seen myself in before surgery.
49:06
SPEAKER_00: Um, and the girls in the shop, like I said, like I love this dress, but I have a stoma, and she was like, You need to stop that.
49:12
SPEAKER_00: She was like, There was a girl on this morning who has a stoma bag and went for a dress she never thought she'd be able to go for because of her bag, and I was like, Oh wow.
49:19
SPEAKER_00: And then she actually knew another girl that I know from home who has a stoma bag, and she was just so understanding, so helpful, so caring, and I was like, you know what, like this is my dress.
49:30
SPEAKER_00: Um, and it was just a lovely experience.
49:31
SPEAKER_00: And I actually think myself and Poppy must have been looking around dresses at the same time because I had messaged Poppy and I was like, Are you letting your stomach dictate the style you're going for?
49:39
SPEAKER_00: And she was like, You just you'll know when you know.
49:42
SPEAKER_00: Um and that was like really good advice.
49:44
SPEAKER_05: Yeah.
49:44
SPEAKER_00: Um so luckily, like the previous shops I would have probably gone for a dress that I thought I would have had to go for Jade in my bag, but the shop that I picked my dress in is exactly what I want it.
49:55
SPEAKER_00: And I'm not as worried about my bag because like Poppy, um, my mum was like, Is it comfortable?
49:59
SPEAKER_00: And I was like, Yeah.
50:01
SPEAKER_00: Um, like you know, you kind of forget it's there, which is good.
50:04
SPEAKER_02: Yeah.
50:04
SPEAKER_02: And that's what you want, isn't it?
50:06
SPEAKER_02: How about emptying throughout the day?
50:09
SPEAKER_02: Have we thought about that?
50:11
SPEAKER_04: My sister, my maid of honour, she's doing the job of emptying.
50:17
SPEAKER_04: So we think we're just gonna hitch the dress up, lean over the toilet, she's gonna empty it and you're gonna lean.
50:23
SPEAKER_02: So are we on about straddling and going like in that way, or are we how are we?
50:29
SPEAKER_02: I think we're just gonna go whatever feels right.
50:31
SPEAKER_02: Whatever.
50:32
SPEAKER_02: I'm just gonna make sure it doesn't put on the dress.
50:33
SPEAKER_02: Yeah.
50:34
SPEAKER_02: Dress you have at the bottom.
50:36
SPEAKER_02: Obviously, you can't say because Zach will probably be watching this and you want it to be a surprise.
50:40
SPEAKER_04: But she's gonna take one for the team and she's gonna do it.
50:43
SPEAKER_02: Yes.
50:43
SPEAKER_02: Yes.
50:44
SPEAKER_02: So her and Bruce are gonna be besties by the end of the day.
50:46
SPEAKER_02: Yeah.
50:47
SPEAKER_02: Um, I suppose I I suppose because of the colour of it, that gives me a bit of anxiety.
50:55
SPEAKER_02: And I wear the Black Moda V and I feel really confident with the Black Moda V.
51:00
SPEAKER_02: And I know as soon as I put on a beige colour bag, I feel completely different.
51:05
SPEAKER_02: I don't have that confidence.
51:07
SPEAKER_02: It feels very medical to me, and that that's just my opinion.
51:10
SPEAKER_02: Because when they came out with the the black colourway, I was, oh my god, it really changed everything for me.
51:17
SPEAKER_02: My confidence, the way I felt in myself.
51:19
SPEAKER_02: I was part of the trials for it, and I remember doing the the videos for it, and I was really emotional on the videos because I was like, oh my god, I don't feel I don't feel horrible, I don't feel as self-conscious.
51:30
SPEAKER_02: And I'm thinking, can I can I still wear that with a wedding dress?
51:34
SPEAKER_02: But then I suppose, what what colour do you wear?
51:37
SPEAKER_04: What I always wear a black bag because I feel more confident in it.
51:41
SPEAKER_04: And I I didn't even think about it going wedding dress shopping, and I kept a black bag on.
51:45
SPEAKER_04: And I remember as I was trying dresses on, I said to the woman, I really didn't think this through.
51:49
SPEAKER_04: Like I've got beige underwear on and with a massive black stoma bag.
51:53
SPEAKER_04: And she was like, I think it's a good thing because you'll be able to see where your stoma is placed in the dresses.
51:59
SPEAKER_04: And if I'm honest, you can't you couldn't even see it.
52:02
SPEAKER_04: No, on the day will I wear a black one?
52:04
SPEAKER_04: Probably not, just so I don't know, just so I know that you can't, if any flashes or anything.
52:10
SPEAKER_04: Do you know what I mean?
52:10
SPEAKER_04: Like with a black bag underneath.
52:12
SPEAKER_04: But yeah, I think it was actually a good idea to go wedding dress off and with a black bag on because you could see it through, you could see where it was, where it where the lumps and bumps would show, and yeah.
52:23
SPEAKER_02: I suppose one thing I thought of for myself is should I go with a half full bag or something just to see how it feels?
52:33
SPEAKER_02: You did.
52:33
SPEAKER_02: I did.
52:34
SPEAKER_04: Yeah, it wasn't full full, but I didn't.
52:36
SPEAKER_04: We had lunch before, and I remember thinking, well, I'm gonna eat on the wedding day.
52:40
SPEAKER_02: So I'm just gonna let how you're gonna last till the evening and you're dancing, you need to yeah.
52:46
SPEAKER_04: Um, but I thought it's gonna full up, full up on my wedding day, so let's just leave it.
52:50
SPEAKER_04: And again, I felt so embarrassed in front of the lady changing because I hate the way my stoma bag looks like that.
52:57
SPEAKER_04: But then again, you couldn't really it didn't matter.
53:01
SPEAKER_02: Yeah, that's such great advice, though, to go when your bag's not flat because I think psychologically you think it needs to be flat to try on a wedding dress, but actually that's not the point of it all, is it?
53:12
SPEAKER_02: You need to allow it to fill up and you need to still be comfortable.
53:16
SPEAKER_02: What about you with yours?
53:17
SPEAKER_02: Like, what's your game plan for emptying and navigating that day with your bag?
53:22
SPEAKER_00: I feel like like anytime I'm out or I'm anywhere like socializing, I literally empty my bag nearly every time I pee.
53:28
SPEAKER_01: Yeah, so yeah, that's what I do.
53:30
SPEAKER_01: Yeah, you do that as well.
53:31
SPEAKER_00: Yeah, I just feel like it's you feel more confident doing that.
53:33
SPEAKER_00: So I probably will try and do that as much as I can on the wedding day.
53:37
SPEAKER_00: But yeah, I'm probably gonna have to have someone to be nominated um bag empty or that day as well.
53:42
SPEAKER_00: It's gonna be a bit hard doing it yourself while trying to hold a wedding dress and not, you know, maybe get like makeup around your dress as well as in the bag.
53:50
SPEAKER_00: Yeah.
53:51
SPEAKER_02: Oh god, so many things to navigate so many things about that one.
53:56
SPEAKER_02: Sorry.
53:57
SPEAKER_02: Um You'll be fine.
53:58
SPEAKER_02: Um I mean, in terms of alcohol, because alcohol can be a big part of weddings, and I'll ask you this as well, Joe.
54:06
SPEAKER_02: For that it's a long day, I can I can imagine it be, I don't know what happened at yours, but I doubt you're thinking about hydration as much as you normally would because you're so immersed in the day and it's your day, and there's so many people and all that.
54:22
SPEAKER_02: And I mean, yeah, did you were you suitably hydrated?
54:26
SPEAKER_03: Oh well, I didn't when I got married, I didn't have my stoma and I wasn't poorly.
54:30
SPEAKER_03: So um I was suitably hydrated for the state that I was in.
54:35
SPEAKER_03: I was I had a lovely day, hydrating quite a lot, but with all the wrong things.
54:40
SPEAKER_03: Um so yeah, not that wasn't really a thing for me, but I think now I would have to be more aware of it.
54:46
SPEAKER_03: I don't find that alcohol necessarily makes a massive impact for me.
54:51
SPEAKER_03: Um so so it it wouldn't worry me overly.
54:55
SPEAKER_03: You want to be able to enjoy yourself, don't you?
54:57
SPEAKER_03: So it's whatever you need to do to enjoy yourself and feel comfortable.
55:00
SPEAKER_03: For some people that might mean cutting down or avoiding the alcohol because actually I'll feel more comfortable because I won't have the consequence.
55:06
SPEAKER_03: For me, there would be less consequence.
55:07
SPEAKER_02: And I don't know about because we're older than the girls, but my hangovers are terrible, man.
55:12
SPEAKER_02: Yes, exactly.
55:13
SPEAKER_02: They are way worse now I'm older.
55:15
SPEAKER_02: They're days long.
55:16
SPEAKER_02: I mean, what about you two, if you've had a tipple?
55:19
SPEAKER_02: Anxiety for me.
55:21
SPEAKER_04: It's the anxiety the day after.
55:23
SPEAKER_04: Even if I've had like a couple of glasses of wine, it's not worth it.
55:25
SPEAKER_04: So I actually think on the wedding day, I don't I don't think I will drink very much.
55:30
SPEAKER_04: A, because I want to remember it all.
55:32
SPEAKER_02: There is that.
55:33
SPEAKER_02: You've paid for it, so you want to give a lot of money.
55:36
SPEAKER_04: And yeah, and B, I I don't want to wake up having a tiny, any sort of anxiety.
55:40
SPEAKER_04: I just want to wake up and think, oh my goodness, I'm married.
55:42
SPEAKER_04: I had the best day ever.
55:44
SPEAKER_04: Yes.
55:44
SPEAKER_00: So what about you?
55:46
SPEAKER_00: I don't know.
55:47
SPEAKER_00: I feel like since getting my stomach back, I don't know if it's because I've most of my colon removed, but I feel like I get drunk a lot quicker.
55:54
SPEAKER_00: Ooh, yes.
55:55
SPEAKER_00: I don't know if my body just can't absorb at the same, but I do feel like alcohol does go to my head.
55:59
SPEAKER_02: That's gonna save you money.
56:00
SPEAKER_02: And um you'll be on your merry way much faster.
56:03
SPEAKER_02: But I mean, I think like normally the advice would be like try and have a glass of water in between each drink.
56:09
SPEAKER_02: Yeah.
56:09
SPEAKER_02: Um, have your electrolytes.
56:10
SPEAKER_02: I mean, who here has electrolytes?
56:12
SPEAKER_02: I do have electrolytes.
56:14
SPEAKER_02: You have electrolytes.
56:15
SPEAKER_02: I do have electrolytes.
56:16
SPEAKER_03: I do I don't know if it makes a difference, to be honest, but I do it because I know it's a good thing to do.
56:21
SPEAKER_02: And I just can't bear trying a million different ones and the flavours and the that again, I find that overwhelming because there's so many different ones.
56:33
SPEAKER_02: I pfft yeah, I pop diorolites.
56:36
SPEAKER_04: Um I've seen it.
56:38
SPEAKER_04: Yeah, I don't know if it's the way that you should do it.
56:41
SPEAKER_04: I'm pretty sure it's not, but I just yeah, I just try and do it quickly so that because I don't want to re-like the taste of electrolytes.
56:47
SPEAKER_04: Um so yeah, I just try, but again, I am very aware, like if I go out for a glass of wine, I will have either a glass of water or I'll put diorolite in some water, or even like a full-fat Coke, just to like boost the sugar levels.
56:59
SPEAKER_04: Um yeah, just I think being aware of it and knowing if your body is feeling a little dehydrated.
57:06
SPEAKER_03: I actually found on my wedding day there's so much going on as well that actually drinking and eating and stuff.
57:11
SPEAKER_03: I th I just was too busy to worry too much about that, so I think I did less of it than I might have done if it was someone else's wedding that I was at.
57:18
SPEAKER_03: Yes.
57:18
SPEAKER_02: I saw the one thing I'm worried about is that I because I don't think about my bag unless it's very full, or if I'm going for a wee and I'll empty at the same time, that sometimes I'm so distracted by the kids and what I'm doing, sometimes I leave it too late and then it's past the point of no return, and I have had leaks because of that, and that's human error.
57:39
SPEAKER_02: And I suppose I'm worried about on my wedding day that I feel like I need to have alarms or I need like you've got designated people, be like, Can you remind me to check my bag?
57:49
SPEAKER_02: Because I feel like I'm not gonna remember.
57:51
SPEAKER_04: I feel like that is like your bridesmaid's maids of honours job on the day.
57:55
SPEAKER_04: Like you are the main event.
57:58
SPEAKER_02: So if they need to come and remind you to have a reason why How do you feel about being the bride?
58:04
SPEAKER_02: Are you buzzing for it or are you like, oh god?
58:06
SPEAKER_00: No, I am, I'm so excited.
58:08
SPEAKER_02: Bring it on and the queen for the day.
58:11
SPEAKER_02: Oh gosh, no, exciting stuff.
58:14
SPEAKER_02: Now, one thing we've got on the table is we've got Joe who's had Barbie butt surgery, and then we've got you guys which have had certain conversations with your surgeons and how that might impact you on the future.
58:25
SPEAKER_02: But your recovery, and and it goes without saying that it's completely different for everyone.
58:31
SPEAKER_02: Um some people really struggle, some people it's manageable, but what was your what was your experience?
58:39
SPEAKER_03: Um so I had the surgery and and about a week later um it became clear that my wound wasn't reconnecting properly, it wasn't healing properly.
58:51
SPEAKER_03: Um because of where it is, it's a very difficult place to keep still and not put pressure on.
58:57
SPEAKER_03: And so so my uh my wound just just kind of came apart and then I had various infections and things along the way, so I had to have a picopump um to drain it, and it turned out to be quite a quite a long process of um I became f very, very friendly with the nurses who I saw every day for quite a few months um because they were dressing and packing my wound for a long time.
59:22
SPEAKER_03: It was every day, and that was quite exhausting.
59:26
SPEAKER_03: So um it it was visiting the GP surgery in the morning during the week, which was absolutely fine, but at weekends, potentially going to the hospital if there was a space, but often it was waiting for the district nurses to arrive, um who are all lovely, but but they would arrive anytime between 8am and 8 pm and so you end up spending all of your weekend waiting for the nurse to arrive.
59:50
SPEAKER_03: Realistically, I knew I was probably going to be quite far far down their list because there'd be other people who needed help getting out of bed, getting fed, all that kind of thing.
59:58
SPEAKER_03: But they could never just tell me we won't be there till the afternoon, you know.
1:00:02
SPEAKER_03: So it just felt like a lot of waiting around.
1:00:05
SPEAKER_03: You couldn't go anywhere for the weekend.
1:00:06
SPEAKER_03: I was desperate to go and visit my dad, you know.
1:00:09
SPEAKER_03: Um but you just couldn't, I couldn't be that far away.
1:00:13
SPEAKER_03: So so that was, you know, it was a it was a really challenging time, the recovery from that.
1:00:18
SPEAKER_03: Despite that, I'm still really glad that I had it.
1:00:21
SPEAKER_03: Now that I have recovered from all of that, I feel so much better.
1:00:24
SPEAKER_03: I don't get the sort of phantom pains anymore.
1:00:27
SPEAKER_03: I obviously don't have any discharge, and it's it feels like all the things that were inside that I had to worry about are now dealt with.
1:00:35
SPEAKER_03: It just was a bit of a longer process to get to that point than I was hoping that it was gonna be.
1:00:40
SPEAKER_03: And I wasn't really prepared for that.
1:00:41
SPEAKER_02: And how was your mental health during that time?
1:00:43
SPEAKER_02: Because it was a year, wasn't it, that you had to have that wound dressing readen every day.
1:00:49
SPEAKER_02: That's a long time.
1:00:51
SPEAKER_03: Yeah, it was a long time.
1:00:52
SPEAKER_03: And I think my mental health would have been worse if I'd known that what was what it was likely to be.
1:00:57
SPEAKER_05: Oh, okay.
1:00:58
SPEAKER_03: But fortunately nobody told me.
1:01:00
SPEAKER_03: Um so I think there were various people.
1:01:03
SPEAKER_03: My auntie, actually, my auntie's a nurse, and she looked after me in the first week after my surgery, and it was her that first noticed that there was something not right.
1:01:11
SPEAKER_03: Um, and she really supported me to get seen quite quickly, otherwise it I would have taken a lot longer to go and see anybody about it.
1:01:18
SPEAKER_05: Yeah.
1:01:19
SPEAKER_03: And I think she had a really good idea that it was going to be quite a long time before I was healed.
1:01:23
SPEAKER_03: But not knowing that you're just dealing with the day in, day out, you know, I I looking back, um it was really challenging.
1:01:32
SPEAKER_03: There were definitely days where I was done, you know, I was tired and um fed up and feeling a bit sorry for myself of you know, why do I have to keep doing this?
1:01:43
SPEAKER_03: Um but you know, I I generally quite a positive person, and I think that's kind of helped me to deal with a lot of it.
1:01:52
SPEAKER_03: But but yeah, definitely some really challenging times.
1:01:54
SPEAKER_03: I remember you know, turning up at the GP surgery and just bursting into tears, and you know, the nurses giving me a hug and then occasionally sending me off to the hospital as well.
1:02:04
SPEAKER_03: I remember arriving at the hospital for the third time in a couple of weeks, and one of the staff just came and immediately gave me a hug as soon as I walked in.
1:02:11
SPEAKER_03: They're like, I can't believe you're back again.
1:02:14
SPEAKER_03: Um and that was lovely, but also made me think, oh, crikey, they think this is really bad.
1:02:19
SPEAKER_03: I think when you're in it, you kind of don't appreciate.
1:02:22
SPEAKER_03: You normalise things so quickly.
1:02:24
SPEAKER_03: Yes, you do.
1:02:25
SPEAKER_03: Through all of it.
1:02:26
SPEAKER_02: Yeah, and actually, if you were telling all this to someone who didn't even know what any of this was, they'd find it shocking, probably, and wonder how on earth you are so positive.
1:02:36
SPEAKER_03: I remember that one of the nurses saying to me, the only reason that you're carrying on, because I was back at work and you know, I can't believe you worked through and all that as well.
1:02:45
SPEAKER_03: That blows my mind.
1:02:46
SPEAKER_03: It was it but but I had no concept of it.
1:02:49
SPEAKER_03: I couldn't see it.
1:02:50
SPEAKER_03: So you don't really Do you think that helped?
1:02:52
SPEAKER_03: I think it did, because she said to me, if this was on your leg and you could see it, the the nurse said to me, if it's on a leg and you could see it, you wouldn't expect yourself to be doing all the things you're doing now, and neither would anybody else.
1:03:03
SPEAKER_03: But because you can't see it, you just feel like you should keep kid ki can and should keep going.
1:03:08
SPEAKER_03: Did you ever like get a mirror and I it was covered.
1:03:13
SPEAKER_03: It was covered the whole time with a massive dressing, so I uh So you didn't really No idea at all.
1:03:18
SPEAKER_03: The nurse did once kind of use her hands to show me the size of it, which was quite alarming because I'd absolutely no idea.
1:03:24
SPEAKER_05: Yeah.
1:03:25
SPEAKER_03: Um but yeah, I d I just I didn't didn't have any concept of it at all.
1:03:30
SPEAKER_02: Gosh.
1:03:30
SPEAKER_02: And I mean you've had some conversations about, you know, family planning and things like that, and everyone's got different experiences, like we've already said, but Barbie butt surgery i it is on the cards for you, isn't it?
1:03:43
SPEAKER_00: Yeah.
1:03:44
SPEAKER_00: And I do feel like the more I think about it, the more terrified I feel.
1:03:47
SPEAKER_00: Um I just feel like it's always gonna be a long process um for recovery once you get it.
1:03:54
SPEAKER_00: But yeah, so my surgeon's basically said to get married, have children, and then um start thinking about that next surgery because it it can affect fertility um in so many cases.
1:04:05
SPEAKER_00: And I have been told as well if I do fall pregnant, I will be getting a C-section just due to having the stoma.
1:04:11
SPEAKER_00: Um it it's more they just say it's better to do that so that I can keep a closer eye and there'll be more checks, that sort of thing.
1:04:18
SPEAKER_00: But yeah, it's a lot to think about.
1:04:19
SPEAKER_00: Um and you'd be consultant led.
1:04:22
SPEAKER_00: Yeah.
1:04:22
SPEAKER_02: Because I know for me I didn't have a stoma with my first child, but I had one with my second.
1:04:28
SPEAKER_02: But because of surgeries as a as a baby, I was told you can't give birth naturally.
1:04:34
SPEAKER_02: And it's funny, because I think some people might assume, oh, that's great, because you don't have to go through childbirth, but you're like, well, actually that that hurts because I've that's been taken away from me.
1:04:46
SPEAKER_02: And maybe I would have liked to have the option.
1:04:49
SPEAKER_02: And maybe so that that was quite that made me quite feel very sad, to be honest, and that whole, you know, there's only one way this kid's coming out, and what if that goes wrong?
1:04:59
SPEAKER_02: And then what happens then?
1:05:01
SPEAKER_02: And when our insights are the way they are, it's um it's very daunting.
1:05:06
SPEAKER_02: I found the whole thing quite daunting, especially when I knew how many surgeries I'd had, and that there's this poor little baby that's growing in amongst all of this chaos and this scar tissue and the adhesions, and I had a lot of adhesion pain during my pregnancy in the first trimester, and it was like sharp stabbing pains in my belly, and I was petrified because, oh my god, I'm losing the baby, there's something wrong.
1:05:29
SPEAKER_02: But then it was the stoma nurses actually that I called, which sounds a bit daft, but I thought if I ring a midwife or someone, they're not gonna have a clue because they're not that it's not their expertise having a woman who's had bat lots of bowel surgery, who's having a C section, who's got Hirschbrung's disease, who's got a stoma.
1:05:47
SPEAKER_02: And it was the stoma nurses that said, you know, when we see people with stomas that are pregnant, they that is normal.
1:05:54
SPEAKER_02: But then I was never told that when I went for the scans and when I went down the pregnancy.
1:06:00
SPEAKER_02: care route, you know, you're not told all these things, so it's it's a lot, isn't it?
1:06:04
SPEAKER_02: Yeah.
1:06:06
SPEAKER_02: Yeah.
1:06:06
SPEAKER_04: What about you?
1:06:08
SPEAKER_04: Uh yeah, um I don't know if I will have to have Barbie butt surgery.
1:06:12
SPEAKER_04: I've been told that it potentially is something that could happen in the future.
1:06:16
SPEAKER_04: But my surgeon has said that I he is not performing any surgeries on me until I have started a family.
1:06:23
SPEAKER_04: And I feel like that now has added a little bit of pressure because there's that extra pressure on the tick and time bomb of the okay, what if the symptoms get really bad again and then it's something out of my control.
1:06:36
SPEAKER_04: I think I just hate the feeling that it's again something that's out of my control because it was out of my control to have my stoma.
1:06:44
SPEAKER_04: Then it could be out of my control something next.
1:06:46
SPEAKER_04: And I remember my consultant saying because I said what what do people do when they have when they're pregnant with a stoma?
1:06:53
SPEAKER_04: Do they give birth naturally?
1:06:54
SPEAKER_04: Do you have a C-section?
1:06:55
SPEAKER_04: And he he's kind of like well you just see how you go and then the surgeon will probably decide what's best for your body because he has opened it up.
1:07:04
SPEAKER_04: He's the one that's been there.
1:07:05
SPEAKER_04: And then I thought again, again it's out of my control.
1:07:08
SPEAKER_04: Yes.
1:07:09
SPEAKER_04: But I guess in the long run, as long as that baby comes out healthy and happy and I'm still healthy and happy whatever's best for my body then I'll just be grateful.
1:07:20
SPEAKER_04: But I won't lie and if I I'd be lying if I said that fertility and getting pregnant with a stoma is not something that I worry about on the daily.
1:07:32
SPEAKER_04: And then I think that that anxiety then contributes to like flares in my rectum because I am overly anxious.
1:07:40
SPEAKER_04: And then then I sit back and if I look back and I think this is like a vicious circle I need to just I do need to just chill and just trust that my body will carry me through.
1:07:51
SPEAKER_04: Yeah.
1:07:52
SPEAKER_02: And unfortunately as women we are we are built with these ticking time bombs aren't we?
1:07:58
SPEAKER_02: Do you think is do men have this thought?
1:08:02
SPEAKER_02: Do they think oh I'm getting to that age now do you think I should worry about getting pregnant or worry about my fertility or do they I mean we've got rock star men that are in their 70s and you know that are having babies with these really young women and are they worrying about that?
1:08:18
SPEAKER_04: Are they I dunno is it men or women or is it just like society that are putting the pressure on us and we're more susceptible to having the pressure as women put on us and it kind of goes over men's heads.
1:08:35
SPEAKER_04: I'm I'm not sure but I just think that I think that I see other people online who are younger than me having a baby and then what why do I automatically go to I'm behind.
1:08:45
SPEAKER_04: No.
1:08:45
SPEAKER_04: Why am I behind?
1:08:46
SPEAKER_04: Yes.
1:08:47
SPEAKER_04: Whereas maybe men don't think like that because there isn't that pressure.
1:08:52
SPEAKER_04: I don't know.
1:08:53
SPEAKER_02: Well that may be one where we need half men, half women could we can we need a bit of a rally yeah definitely definitely I mean we've covered most of the questions that our followers sent in but I suppose the last thing I want to finish with with you all is what advice would you give to women that are going into stoma surgery and are thinking about all these things oh my gosh how's it going to affect XYZ is there anything you wish you'd been told or anything you wish you'd driently?
1:09:26
SPEAKER_03: Jo, I'll start with you.
1:09:29
SPEAKER_03: So I think that for me the most important message is to allow yourself time and that your amount of time will be different to everybody else's amount of time.
1:09:41
SPEAKER_03: And to just have trust and have faith in the fact that you know you will get there you will get to a position of being more comfortable being more confident it all starts to feel so normal really relatively quickly and you know I'm in a place now where majority of the time I'm I'm not aware of my bag, I'm not aware of my stoma, I don't really feel it but I remember at the very beginning being super sensitive to every movement, every little feeling and it's just not something that comes into my mind for most of the day anymore.
1:10:15
SPEAKER_03: So just being aware to kind of give yourself time around that.
1:10:19
SPEAKER_03: And in terms of the fertility and the pregnancy as well I think pregnancy is such a complicated daunting time for everybody.
1:10:27
SPEAKER_03: I had my children before before I had colitis before I had my stoma but it's it's a complicated difficult time for lots of women with lots of complications having the stoma and having the surgeries will add another layer of complication to that but it's it's kind of not to give yourself too much of a hard time around that because everybody else is facing facing some level of challenge too and finds it a difficult process.
1:10:50
SPEAKER_00: Yeah yeah what about you?
1:10:52
SPEAKER_00: I just think it's important to definitely allow yourself to feel all the emotions that you want to feel like post surgery I would have been so hard on myself if I like got myself into like a negative slump I would have been like I should be happier like I should be more grateful that I'm still here but it's definitely just a journey of like accepting your new body and accepting the new norm.
1:11:13
SPEAKER_00: But yes the best thing I've done definitely was share my story online.
1:11:17
SPEAKER_00: I feel like the best advice you get is from other people who have stoma bags or who've been through it.
1:11:23
SPEAKER_00: Like there's definitely not enough advice from doctors, nurses, stoma nurses.
1:11:28
SPEAKER_00: I don't think you fully understand it until you experience it yourself.
1:11:34
SPEAKER_00: But yeah I'm looking back now I'm so glad with how far I've came and but it would have been nicer at the time to have more advice.
1:11:42
SPEAKER_00: But I have said before that I'm lucky to have known two girls locally who have stoma bags so I literally reached out to them straight away and they literally kept me going.
1:11:50
SPEAKER_00: But yeah it's nice to be able to speak to people who relate to exactly everything you're going through.
1:11:56
SPEAKER_02: Yeah it's the power of connection isn't it and and I do do any of you know anyone in your immediate life that's had a bag or knew what one was?
1:12:04
SPEAKER_03: No.
1:12:04
SPEAKER_03: No first time I chatted about it properly was with you a couple of weeks ago and now you're on a pocket challenge.
1:12:12
SPEAKER_02: And what about you, Poffy?
1:12:13
SPEAKER_04: I'd say that the a quote that I always stick by is recovery is not linear.
1:12:19
SPEAKER_04: So for me I sometimes do give myself a hard time because I think you've you've done so well for so long why are you feeling upset now?
1:12:28
SPEAKER_04: And I've really noticed it with like the next transitions in life like getting married and thinking about starting a family.
1:12:35
SPEAKER_04: Those are those are huge life decisions for anyone and I think just to give myself that acknowledgement like it's okay to get upset still.
1:12:44
SPEAKER_04: Like you're four years on but you've been through a heck of a lot and I yeah it's not linear it's going to be a roller coaster but having a support system around you and just being able to chat things through is the best.
1:12:56
SPEAKER_02: Yeah and and it's changing all the time isn't it yeah and like you might switch one problem out for something else but like I think yeah and it there's a lot of power in trying to tell yourself that the person stood next to you that probably you know might not have a bag they they will they'll have something going on might not be the same thing but they will.
1:13:16
SPEAKER_02: Well ladies it has been an absolute pleasure thank you so much for this time together we've covered so so much and yeah thank you so much it's been invaluable and I hope you've had the best time.
1:13:29
SPEAKER_02: Thank you