Latest / Beyond the Pouch / Aimee on Living with a Urostomy | Beyond the Pouch S3 EP7

Transcript

Aimee on Living with a Urostomy | Beyond the Pouch S3 EP7 · Beyond the Pouch

• 0:00
  SPEAKER_01: So something with a condition I have, which is Fowler syndrome, is I don't get the sensation to wee.
• 0:06
  SPEAKER_01: So ultimately it led to urolostomy was probably my best option.
• 0:10
  SPEAKER_01: You know, it's not a curable condition, you can't ever get rid of it.
• 0:14
  SPEAKER_01: And kind of thinking that I'm gonna have a stoma for the rest of my life, it's it doesn't feel real.
• 0:19
  SPEAKER_01: So something that with a cafeteria you learn, you can't really use saunas, you can't go swimming because of risk of infection.
• 0:28
  SPEAKER_01: So with the stoma, I've been able to do those things again.
• 0:31
  SPEAKER_01: My journey is so up and down, and there are days I really love how I look, and there are days where I really hate everything to do with it.
• 0:38
  SPEAKER_01: And I think just not putting that pressure on myself to feel a certain way has been really freeing.
• 0:44
  SPEAKER_01: Yeah, it's not a one-size fits-all, and I don't think any stoma journey is a one-size fits all.
• 0:54
  SPEAKER_00: Welcome to episode seven of Beyond the Pouch, and today we are joined by Amy, noblder babe.
• 1:00
  SPEAKER_04: It's gonna be absolutely amazing.
• 1:02
  SPEAKER_04: So we she has a erostomy, and this is the first time we're actually gonna have someone with a erostomy on our podcast.
• 1:08
  SPEAKER_00: Yeah, yeah.
• 1:08
  SPEAKER_00: It's gonna be really exciting.
• 1:10
  SPEAKER_00: And we're gonna ask all the juicy questions, everything you wouldn't know, and it's very different to having an eileostomy or a colostomy, so it's just gonna be really lovely to shine a light on the forgotten ostomy.
• 1:20
  SPEAKER_04: Yeah.
• 1:21
  SPEAKER_04: Love that.
• 1:22
  SPEAKER_04: Right, let's get her in.
• 1:23
  SPEAKER_00: Come on, Amy.
• 1:29
  SPEAKER_00: Okay, we're here with episode seven of the season, and we have the lovely Amy, otherwise known as No Bladderbee.
• 1:35
  SPEAKER_00: Welcome to the city.
• 1:36
  SPEAKER_00: Welcome, Amy! Now, we are here to talk about all things your ostomy, which is something we haven't covered before.
• 1:43
  SPEAKER_00: You are the expert, you are the guru for the next hour, and we want to start getting to know you with some quick fire questions.
• 1:50
  SPEAKER_00: So, what is the biggest myth about stomas that you think needs busting?
• 1:55
  SPEAKER_00: That there's only one type of stoma.
• 1:56
  SPEAKER_00: Yes.
• 1:57
  SPEAKER_03: Yeah, big shout.
• 1:58
  SPEAKER_03: Yeah, big shout out.
• 2:00
  SPEAKER_03: Instantly.
• 2:00
  SPEAKER_00: Yeah.
• 2:02
  SPEAKER_00: And what's the most empowering moment you've had since having yours?
• 2:06
  SPEAKER_00: I think just having a lot more freedom.
• 2:09
  SPEAKER_00: I think that's freedom.
• 2:12
  SPEAKER_00: And one word to describe your relationship with your body right now.
• 2:16
  SPEAKER_00: A roller coaster.
• 2:17
  SPEAKER_00: A roller coaster, I think.
• 2:19
  SPEAKER_04: Yeah, that's fair.
• 2:20
  SPEAKER_00: And finally, a song or quote that always lifts your mood.
• 2:25
  SPEAKER_00: Um, Glorious by Macklemore.
• 2:27
  SPEAKER_01: That's amazing.
• 2:28
  SPEAKER_01: Oh, tune.
• 2:29
  SPEAKER_01: That is a tune.
• 2:29
  SPEAKER_01: Tune, tune, tune.
• 2:31
  SPEAKER_01: Love that.
• 2:31
  SPEAKER_01: It always makes me smile.
• 2:32
  SPEAKER_04: Oh, perfect.
• 2:33
  SPEAKER_04: Well, yeah, when all of our guests, when we we get on the podcast, we we'll ask them loads of questions, loads of bits and pieces.
• 2:39
  SPEAKER_04: But before we do any of that, I want to know a bit more about you.
• 2:42
  SPEAKER_04: Yes.
• 2:42
  SPEAKER_04: A bit more about your story, a bit about your diagnosis and all of those sorts of things.
• 2:46
  SPEAKER_01: Yes, so I've had my erostomy for about 18 months now.
• 2:51
  SPEAKER_01: Um so back in 2023, I woke up one day and I was going for a day trip to London, and I didn't feel quite right, and I couldn't go for my morning we.
• 3:03
  SPEAKER_01: Everyone wakes up in the morning, has a quick wee.
• 3:05
  SPEAKER_01: I couldn't do that and I didn't really think too much of it.
• 3:09
  SPEAKER_01: So went on my day, kept drinking more and more and more, and it wouldn't work.
• 3:16
  SPEAKER_01: And it got to probably about four o'clock in the afternoon.
• 3:19
  SPEAKER_01: I really wasn't feeling well, so I came home early and I'd kept drinking, thinking like, you know, at some point the seal's gonna break.
• 3:27
  SPEAKER_01: Like, you know, I can go straight.
• 3:29
  SPEAKER_01: Yeah, exactly.
• 3:30
  SPEAKER_01: Um, and that wasn't happening, so I'd gone home, I'd you know, tried running the tap and going for a hot shower and like a bath, nothing was happening.
• 3:40
  SPEAKER_01: And I've always had quite a lot of health issues, but I think I was a bit in denial that there was anything wrong.
• 3:47
  SPEAKER_01: Okay.
• 3:47
  SPEAKER_01: So family members kind of pushed me to you need to get this checked out.
• 3:51
  SPEAKER_01: Obviously, it's not very healthy.
• 3:53
  SPEAKER_01: Uh so I'd gone to AE and they'd asked if I was on any drugs, and I was like, no, definitely not.
• 4:00
  SPEAKER_01: Apparently, ketamine use is a very common problem among young people and bladder issues.
• 4:06
  SPEAKER_01: Um, but I am not a drug user, so it was like, no, nothing like that.
• 4:11
  SPEAKER_01: Um, I had a bladder scan and I had over a litre in my bladder of urine, um, bearing in mind a female bladder I believe should hold about 300 mil.
• 4:20
  SPEAKER_01: Yeah.
• 4:21
  SPEAKER_01: Cheese.
• 4:22
  SPEAKER_01: So it was a lot.
• 4:23
  SPEAKER_01: You must have been in agony.
• 4:25
  SPEAKER_01: Yeah, a lot of pain, a lot of pain.
• 4:27
  SPEAKER_01: I'd felt just really like lightheaded, a lot of like pelvic pain, back pain, it just wasn't very nice.
• 4:32
  SPEAKER_01: Um, and they'd fitted me with an indwelling catheter and just kind of sent me on my way.
• 4:37
  SPEAKER_04: What's an indwelling catheter?
• 4:39
  SPEAKER_01: Indwelling catheter is like kind of your bog standard cafeter that would go through your urethra, kind of how you'd imagine a catheter to be used.
• 4:48
  SPEAKER_01: So that was placed and they'd sent me home and just said, like, oh okay, the district nurses will follow you up.
• 4:55
  SPEAKER_01: No referral was sent.
• 4:57
  SPEAKER_01: I wasn't told how to deal with it on a day-to-day.
• 5:01
  SPEAKER_01: So when you have a cafeter or the urostomy, you connect to a night bag at night because you create quite a lot of urine.
• 5:09
  SPEAKER_02: Yeah, yeah.
• 5:09
  SPEAKER_01: Your leg bag, when you have a cafeter or you like urostomy, they usually probably hold up to like 500 mil.
• 5:15
  SPEAKER_02: Okay.
• 5:16
  SPEAKER_01: Overnight, you can be making like a litre, so you can't use that overnight.
• 5:20
  SPEAKER_01: You need to have a night bag.
• 5:21
  SPEAKER_01: But no one taught me this when I first had my cafeteria that's horrendous.
• 5:25
  SPEAKER_01: Yeah.
• 5:26
  SPEAKER_01: And because I was, you know, a young girl, I wasn't really under the same bracket as being under elderly care.
• 5:35
  SPEAKER_01: So they were kind of like, oh well, you're mobile and you're a young girl, so there's not really as much rush, which is how old were you at this point?
• 5:44
  SPEAKER_01: Um, I think it was a couple months after I turned 21.
• 5:48
  SPEAKER_01: Oh, I'm sorry.
• 5:49
  SPEAKER_01: So, and it was also it it's a very intimate place and something that's quite, you know, it's hard to open up to professionals about stuff like that.
• 5:59
  SPEAKER_01: So that'd happen, and then they'd referred me for more tests, and kind of long story short, after a couple months we'd done a um eurodynamics test, which is another quite invasive procedure.
• 6:13
  SPEAKER_01: They put a, I believe it's like a it's a wire up your urethra, one up your back passage, and they slowly fill your bladder, and basically they see how your bladder reacts and how much you can hold.
• 6:27
  SPEAKER_01: Okay.
• 6:27
  SPEAKER_01: So something with a condition I have, which is fowler syndrome, is I don't get the sensation to we.
• 6:34
  SPEAKER_01: So as my bladder would fill, I couldn't feel it.
• 6:38
  SPEAKER_01: So in my test, I believe they'd got me up to 670 mil.
• 6:43
  SPEAKER_01: I couldn't wee, I couldn't feel the sensation to we, and then I couldn't pass it.
• 6:48
  SPEAKER_01: So we'd found out that my detruser muscle, which is the muscle that kind of constricts your bladder, that had failed.
• 6:55
  SPEAKER_01: But then on the flip side, my urethra, that muscle was kind of in a spasm, it was in an overdrive, so that wouldn't relax and my bladder wouldn't constrict.
• 7:05
  SPEAKER_01: So when you go we, it'd be this happens and then this happens.
• 7:09
  SPEAKER_01: Um mine wouldn't do that.
• 7:11
  SPEAKER_01: So yeah, it was very difficult.
• 7:14
  SPEAKER_01: So that kept going on.
• 7:16
  SPEAKER_01: No one locally knew the condition because it is a rare condition, it's two in a million, so locally, no one really knew.
• 7:24
  SPEAKER_01: It was kind of a challenge even getting doctors who knew the condition, let alone how to treat it.
• 7:28
  SPEAKER_01: Yeah, yeah.
• 7:29
  SPEAKER_01: So I was very lucky that I'd been admitted in I was in retention, they did something, so you can do super uh sorry, self-catheterisation, which is they're like this size, and you pass them intermittently.
• 7:43
  SPEAKER_01: So whenever you'd need a wee, you'd pass a self-catheter.
• 7:46
  SPEAKER_01: So I passed a self-catheter and it would get stuck because of my Fowler syndrome.
• 7:51
  SPEAKER_01: Um and then I also couldn't then pass them because my urethra was in a spasm.
• 7:56
  SPEAKER_01: This led me to AE and I had two litres in my bladder.
• 8:00
  SPEAKER_03: Two litres.
• 8:01
  SPEAKER_01: Two litres in my bladder.
• 8:02
  SPEAKER_01: Um, so I was admitted because they were worried about risk of kidney damage.
• 8:07
  SPEAKER_04: But you must have been in agony as well.
• 8:09
  SPEAKER_04: I was in a loss of pain.
• 8:10
  SPEAKER_01: I couldn't stand very well, but I also couldn't sit down.
• 8:14
  SPEAKER_01: So I was kind of crouched over this bed in AE.
• 8:18
  SPEAKER_01: It's it's awful pain.
• 8:20
  SPEAKER_01: I don't think I felt much pain like it.
• 8:22
  SPEAKER_01: Um obviously I couldn't necessarily feel the urge to wee, but I'd felt the pain of that.
• 8:29
  SPEAKER_01: So I was admitted, and then this amazing doctor, he didn't really know much about fowlers, but he'd said, I can't leave you like this.
• 8:36
  SPEAKER_01: So I was placed with something called a suprapubic catheter.
• 8:40
  SPEAKER_02: Okay.
• 8:40
  SPEAKER_01: And this is a surgically placed catheter, and it goes through your belly in directly into your bladder.
• 8:46
  SPEAKER_01: Okay.
• 8:47
  SPEAKER_01: So I'd had this and that was my treatment for probably about 18 months.
• 8:52
  SPEAKER_04: So how does that work?
• 8:53
  SPEAKER_01: Is it just So it's a tube that goes straight through, so I mean it would it's an open wound basically, and then that would connect to the catheter bag.
• 9:03
  SPEAKER_01: Right, okay.
• 9:04
  SPEAKER_01: Um would you have to change the bag with that?
• 9:07
  SPEAKER_01: Well, you have to get the catheters changed.
• 9:09
  SPEAKER_01: Okay.
• 9:10
  SPEAKER_01: So a balloon holds it in place in your bladder.
• 9:14
  SPEAKER_01: Oh.
• 9:14
  SPEAKER_01: But every six weeks you'd need to have the catheter changed.
• 9:18
  SPEAKER_01: Yeah.
• 9:18
  SPEAKER_02: Yeah.
• 9:19
  SPEAKER_01: Because of how my bladder would react, they would get stuck.
• 9:23
  SPEAKER_02: Oh.
• 9:23
  SPEAKER_01: So it was very traumatic getting these changed.
• 9:27
  SPEAKER_01: I would have a a nurse like yanking on this catheter.
• 9:31
  SPEAKER_01: And I mean, you can understand kind of the anxiety with changes.
• 9:35
  SPEAKER_01: It would flare up my condition, and then by the time my flare up had gone down, I was then back to I need it changing again.
• 9:43
  SPEAKER_01: Um, and with this came a lot of infections, kind of wound infections, UTIs, and once I was referred to the specialist, we'd basically said, This can't continue.
• 9:56
  SPEAKER_01: My infections were starting to become resistant to antibiotics.
• 9:59
  SPEAKER_02: Oh gosh.
• 10:00
  SPEAKER_01: And that's not a game you really want to play with.
• 10:04
  SPEAKER_01: So there's a couple of different treatments for fouler syndrome.
• 10:08
  SPEAKER_01: There's something called an SNS, which is a sacral nerve stimulator, and that's placed in your back and is attached to the sacral nerve, and basically it can help with some people with fouler syndrome in being able to go to toilet.
• 10:20
  SPEAKER_01: I wasn't really eligible for this.
• 10:23
  SPEAKER_01: So that was off the cards.
• 10:26
  SPEAKER_01: They then can try Botox, which can some people do it into the bladder, some people do it into the retral neck.
• 10:32
  SPEAKER_01: I can't have any more Botox because I have that for another condition.
• 10:35
  SPEAKER_01: So that was off the cards.
• 10:38
  SPEAKER_01: There's then something called a Mitrophonoff, which is kind of the premise like the superpubic catheter.
• 10:45
  SPEAKER_01: However, it's a form of stoma, I believe, but you pass the catheter through this, so it's a channel that's made and then you can pass the catheter through that, but in the same kind of position as a superpubic.
• 10:57
  SPEAKER_01: I couldn't have this because my doctor had basically said because my bladder one struggled with catheterization and getting stuck and everything, if I couldn't pass a catheter, they wouldn't be able to pass it any other way, and then I could be in a really like emergency situation.
• 11:15
  SPEAKER_01: So ultimately it led to urostomy, was probably my best option.
• 11:21
  SPEAKER_01: So on the 12th of December 2024, I had a six-hour open surgery and it was a super trigonal cystectomy, so they removed I think it was like 80% of my bladder, it was the top half of my bladder.
• 11:35
  SPEAKER_01: And then a urostomy is formed, so it's your kidneys, and then you have your ureters, which are the tubes, and then they take a bit of your small intestine, connect that, and then that's your urostomy.
• 11:47
  SPEAKER_01: So and then yes, I've been recovering since then.
• 11:53
  SPEAKER_04: Look, thank you for sharing.
• 11:54
  SPEAKER_04: And like I I've literally I've never heard of like half of these procedures.
• 11:58
  SPEAKER_04: Like I didn't I don't really know much about this condition either.
• 12:01
  SPEAKER_04: So I really appreciate you sharing all of that.
• 12:03
  SPEAKER_04: And yeah, actually let us know what a urostomy is.
• 12:06
  SPEAKER_00: Yeah, and when you were going through all these di the diagnosis and all these things, were you actively trying to find people that were like yourself online, or was that just not in your I did.
• 12:18
  SPEAKER_01: So I connected with the Fowler Syndrome Charity and I ended up reaching out to them.
• 12:24
  SPEAKER_01: I'm now very good friends with the CEO, which is lovely.
• 12:27
  SPEAKER_01: Oh, and as I'd mentioned earlier to you guys, I've met the professor who founded Fowler Syndrome, Professor Fowler.
• 12:35
  SPEAKER_01: Um so when I first have in ha started having symptoms, I reached out to them just to kind of understand what was going on because when you get diagnosed with a rare condition, a lot of the time you need to have the information because the doctors don't have that information.
• 12:54
  SPEAKER_02: Yeah.
• 12:54
  SPEAKER_01: Which is just cruel in a way, isn't it?
• 12:57
  SPEAKER_01: Because it's horrible.
• 12:58
  SPEAKER_01: You'd get you'd go in front of doctors who were saying it was all in your head or it's anxiety, or you know, it's an age thing.
• 13:06
  SPEAKER_01: And you're young, how could it be an age thing?
• 13:08
  SPEAKER_01: A lot of people think that because you're young, it's just a young female thing.
• 13:13
  unknown: Ugh.
• 13:13
  SPEAKER_01: So it was very difficult because there'd be so many doctors who didn't know about it, didn't understand it, didn't believe it.
• 13:20
  SPEAKER_01: I mean, I saw one urologist which is under urology, and he'd said it was a throwabout term, it wasn't really a condition.
• 13:28
  SPEAKER_01: Oh and he was at a private hospital, so it was an NHS referral for my eurodynamics.
• 13:34
  SPEAKER_01: He did my urodynamics testing, and he was like, Oh, it's just a throwabout term, like you know, it's not really it's not a diagnosis, and it is a formal diagnosis.
• 13:45
  SPEAKER_00: Yeah.
• 13:45
  SPEAKER_01: So it's very concerning, but I needed to be very well educated on it because a lot of the time the doctors aren't aware.
• 13:53
  SPEAKER_02: Yeah.
• 13:53
  SPEAKER_00: And you and you sound like you've you you've really got that information yourself and you've educated yourself, and I suppose there are a lot of people that maybe wouldn't feel mentally strong enough at the time to do that.
• 14:05
  SPEAKER_00: I mean, how did you even get your head around it all and think to do that during such tough times?
• 14:11
  SPEAKER_01: I'm very much a person of I believe in fake it till you make it.
• 14:16
  SPEAKER_01: So like with my social media, a lot of the things I've posted, I would never post it and feel confident posting it.
• 14:25
  SPEAKER_01: But I act like I'm confident, and I think along the way that confidence has just kind of made itself apparent that it wasn't there, and I faked it and I've kind of fabricated it to some extent.
• 14:37
  SPEAKER_00: Yeah, it's like if you tell yourself something enough, you believe it, don't you?
• 14:40
  SPEAKER_00: And it's the same principle.
• 14:42
  SPEAKER_01: So kind of with all of this, it was so unbelievable.
• 14:47
  SPEAKER_01: I think I was just kind of like dazed going through all of it.
• 14:50
  SPEAKER_01: It didn't really feel real.
• 14:51
  SPEAKER_01: I think there are still times where it doesn't feel real and kind of getting in my head that you know it's not a curable condition, you can't ever get rid of it.
• 15:01
  SPEAKER_01: And kind of thinking that I'm gonna have a stoma for the rest of my life, it's it doesn't feel real.
• 15:06
  SPEAKER_02: Yeah.
• 15:06
  SPEAKER_01: Like I'm very well in my head now of I've got the stoma, I'm happy with it, but kind of picturing that when I'm like like a senior, it's it's a very different conversation.
• 15:16
  SPEAKER_04: You're like 18 months into your journey though, aren't you?
• 15:18
  SPEAKER_00: So it's still so fresh, isn't it?
• 15:21
  SPEAKER_00: And and what does day-to-day management of your uostomy look like?
• 15:26
  SPEAKER_00: Drinking a lot.
• 15:28
  SPEAKER_04: So what's uh what's a lot then?
• 15:29
  SPEAKER_04: Because like from a a ileostomy perspective, we have to drink a lot, but like is yours much more?
• 15:36
  SPEAKER_04: Because you're you're literally passing much more urine, I guess.
• 15:42
  SPEAKER_01: Okay.
• 15:43
  SPEAKER_01: Um but I think it kind of depends person to person.
• 15:46
  SPEAKER_01: Yeah.
• 15:47
  SPEAKER_01: I've also got pots, so I have to drink a lot a lot anyway.
• 15:50
  SPEAKER_01: So do you crave salt?
• 15:52
  SPEAKER_01: I don't like salt, which is very strange.
• 15:55
  SPEAKER_01: Interesting.
• 15:56
  SPEAKER_01: But I've been told to up my salt content, which I'm not enjoying too much.
• 16:00
  SPEAKER_01: Yeah.
• 16:01
  SPEAKER_01: But um no, it's upping how much I'm drinking.
• 16:04
  SPEAKER_01: It is quite difficult because adapting your life to that, obviously, as you know, with a stoma it's always working.
• 16:12
  SPEAKER_00: Yeah, yeah.
• 16:13
  SPEAKER_01: But when you wee, you can wee like very quickly.
• 16:16
  SPEAKER_01: So sometimes I'll if I drink a lot, I could be emptying every like 30 minutes to an hour.
• 16:21
  SPEAKER_01: Yeah.
• 16:21
  SPEAKER_01: And sometimes that isn't sustainable when you've got things planned.
• 16:25
  SPEAKER_01: So it's kind of adapting how you're drinking around your day.
• 16:28
  SPEAKER_01: Because if you know you can't empty, you like I don't want it to burst or leak or anything.
• 16:35
  SPEAKER_01: So, I mean, that is one thing kind of I always keep in mind, but obviously staying on top of liquids is very important, and because I don't have my bladder, I need to keep flushing my kidneys because that's very important.
• 16:47
  SPEAKER_01: Yeah, yeah.
• 16:48
  SPEAKER_01: Realistically, it's just dealing with the stoma day to day.
• 16:52
  SPEAKER_01: It's very I'd I'd be I'd imagine quite similar.
• 16:56
  SPEAKER_01: Um, realistically, obviously I don't really have to avoid foods as much.
• 17:00
  SPEAKER_01: I know is the different types of stomas, the food kind of intake's different.
• 17:04
  SPEAKER_01: I don't really have to worry about that, which is quite nice.
• 17:06
  SPEAKER_00: Yeah.
• 17:07
  SPEAKER_01: Um but a night bag is something that is obviously very different.
• 17:11
  SPEAKER_01: So with the erostomy, you connect to your night bag every night.
• 17:14
  SPEAKER_01: Okay.
• 17:15
  SPEAKER_01: That is so irritating.
• 17:18
  SPEAKER_01: What if you fall asleep?
• 17:20
  SPEAKER_01: What if you I suppose you've got to be really regimental with it?
• 17:23
  SPEAKER_00: So I sleep with it.
• 17:24
  SPEAKER_01: So it's part of my nighttime routine.
• 17:26
  SPEAKER_01: When I'm getting ready for bed, I attach to my night bag.
• 17:29
  SPEAKER_01: Um, but I'm a regular in bed, so when I turn, the wire kind of comes with me.
• 17:35
  SPEAKER_01: So it's quite a long, like it's it's a long wire.
• 17:38
  SPEAKER_01: Yeah.
• 17:39
  SPEAKER_01: So it would kind of reach the bottom of your bed if that's kind of and obviously from where your stoma is.
• 17:44
  SPEAKER_01: Yeah.
• 17:44
  SPEAKER_01: Um, so when you turn, you can get tangled and you can get kind of stands to go next to your bed.
• 17:51
  SPEAKER_01: Okay.
• 17:51
  SPEAKER_01: But also when you turn a lot, you're pulling it.
• 17:54
  SPEAKER_01: Yeah, yeah.
• 17:56
  SPEAKER_04: It's kind of adapting to how that works and so like you said there's not a lot of drinks or anything like that they have to avoid, but is there like do you notice any difference?
• 18:05
  SPEAKER_04: So, like, my assumption is if you're gonna have alcohol or coffee, that'll dehydrate you quicker.
• 18:10
  SPEAKER_04: Do you notice things a bit more like that?
• 18:12
  SPEAKER_04: So you wouldn't go near a couple of things.
• 18:14
  SPEAKER_01: I have noticed the smell.
• 18:17
  SPEAKER_01: So interesting.
• 18:18
  SPEAKER_01: With my urine, it smells a lot different from pre-surgery.
• 18:22
  SPEAKER_01: Really?
• 18:23
  SPEAKER_01: It's very strong, but also like I can tell from a mile off when I have an infection.
• 18:28
  SPEAKER_01: Like you could smell it in the room.
• 18:30
  SPEAKER_01: Like sometimes it's very strong.
• 18:32
  SPEAKER_01: Like if when I have my nightbag attached, it'll get to the point my partner will be like, You have an infection.
• 18:37
  SPEAKER_01: I can smell it.
• 18:38
  SPEAKER_02: Wow.
• 18:38
  SPEAKER_01: It can be really strong.
• 18:40
  SPEAKER_01: Um with alcohol, it just it fills up very quickly.
• 18:44
  SPEAKER_01: I don't really drink too often, but when I do, you know, you have a few cocktails and my bag fills very quickly, very, very quickly.
• 18:51
  SPEAKER_01: So it'll be constantly up and down, up and down to the toilet.
• 18:55
  SPEAKER_01: So what's the capacity of the bag you wear in the day then?
• 18:58
  SPEAKER_01: It's probably about 500 mil, I think.
• 19:00
  SPEAKER_00: Okay.
• 19:01
  SPEAKER_00: So And when it when it fills up, how much is it like I I know like we've both got earlyosteries haven't we?
• 19:07
  SPEAKER_00: It's like a like a drippy tap you can't turn off, kind of.
• 19:10
  SPEAKER_00: What about you?
• 19:11
  SPEAKER_00: Is it just gushes of a lot of the time or is it drips or it it depends.
• 19:17
  SPEAKER_01: So you're obviously not constantly producing lots and lots of urine, but it's still constantly working.
• 19:23
  SPEAKER_01: So I mean when I first had my surgery, there's a video that I took and it is on my Instagram, and I was changing my bag and I think I I think I watched it, yeah, yeah, yeah.
• 19:32
  SPEAKER_01: It just spurted out very far, but my partner was stood in front of it, which you can't see on the video.
• 19:38
  SPEAKER_01: So he was in the firing line, and yeah, sometimes it's you just can't stop it.
• 19:44
  SPEAKER_01: I mean, when you change your bag and your stoma won't stop, like and it's very it's very liquid, so as soon as you clean it and then you're covered again, so but it moves so quickly, like sometimes I'll clean and then it'll be I'm covered in we because I haven't caught it in time.
• 20:00
  SPEAKER_02: Yeah.
• 20:01
  SPEAKER_01: But realistically, it's just it it can be quite slow and sometimes it's just it's constantly working.
• 20:08
  SPEAKER_01: Obviously, it just depends on if you've drank a lot, then it's constantly working.
• 20:14
  SPEAKER_04: Well, one thing we were chatting about out before we came in was um you've been to on holidays recently.
• 20:19
  SPEAKER_04: I think one of your photos we'll talk about later is it was um also abroad.
• 20:22
  SPEAKER_04: So how is it different when you're traveling then?
• 20:24
  SPEAKER_04: Because like for my our side it's more bags, etc.
• 20:28
  SPEAKER_04: You've got to navigate, you know, probably so much more than we would probably take for granted.
• 20:32
  SPEAKER_04: So what's it like for you travelling?
• 20:34
  SPEAKER_01: Realistically, it's very similar with extra bags, just being precautious with your like with your supplies.
• 20:41
  SPEAKER_01: Um for airplanes, when I've done longer haul flights, I can connect my night bag.
• 20:49
  SPEAKER_01: Oh, that's a good idea.
• 20:50
  SPEAKER_01: Yeah, yeah, yeah.
• 20:51
  SPEAKER_01: Good idea.
• 20:52
  SPEAKER_01: It's a little bit of a it's like a little G code.
• 20:55
  SPEAKER_04: Yeah, yeah.
• 20:55
  SPEAKER_04: Um so Look at everyone else getting up to stand up all the time, you guys.
• 21:00
  SPEAKER_01: Yeah, yeah.
• 21:01
  SPEAKER_01: Uh so no, I mean it I'd like to say it's a little bit of silver lining.
• 21:05
  SPEAKER_00: Yeah, because I mean you've got to look for them if you're gonna do it.
• 21:08
  SPEAKER_01: Exactly.
• 21:09
  SPEAKER_01: So I normally do that, I'll take a like the blue disposable bags for when you change.
• 21:14
  SPEAKER_01: I usually take one of them with my night bag and I'll take a hand luggage with me, pop it in there, and then at the end of the flight I'll disconnect, tie the end off, and then either empty it in the airplane toilet or get into the actual terminal and then empty the bag then.
• 21:30
  SPEAKER_01: But it's a bit of it when you go through uh the scanners, it always it always goes off because it's liquid.
• 21:38
  SPEAKER_02: Yeah, cool.
• 21:38
  SPEAKER_01: And then trying to navigate a language barrier with that, yeah.
• 21:41
  SPEAKER_01: It's never too fun because not everyone understands.
• 21:43
  SPEAKER_01: Yeah.
• 21:43
  SPEAKER_00: Have you ever got into any I don't say sticky, that's the wrong word.
• 21:48
  SPEAKER_00: Awkward situations with in different airports trying to explain things, or has it been okay?
• 21:55
  SPEAKER_00: Sometimes.
• 21:56
  SPEAKER_01: I think as well because of my age, it It's less I think people understand it less.
• 22:02
  SPEAKER_01: So when I'm like, oh, I've got a disability, they look at me like you're in the wrong line.
• 22:08
  SPEAKER_01: They say I'm not, like, I have got I have got a disability.
• 22:11
  SPEAKER_01: Um but I think sometimes there's just they'll there'll always be a language barrier, and I don't think you can really help it.
• 22:20
  SPEAKER_01: I've not had too many bad experiences, thankfully.
• 22:23
  SPEAKER_04: But I don't know about you, but I've I've like I feel like it is getting much better with airport security now.
• 22:29
  SPEAKER_04: Like there's less qu questions asked.
• 22:32
  SPEAKER_04: It's more stand here, please.
• 22:34
  SPEAKER_04: Okay, cool.
• 22:35
  SPEAKER_04: It's just more of a making sure it's positive.
• 22:36
  SPEAKER_04: There's been a lot of training in this country.
• 22:38
  SPEAKER_04: So that is positive at least.
• 22:39
  SPEAKER_01: Which is I think my biggest problems have been in the UK airports.
• 22:43
  SPEAKER_01: Really?
• 22:44
  SPEAKER_01: She said.
• 22:45
  SPEAKER_03: Well done.
• 22:46
  SPEAKER_03: Well, clearly we need more training.
• 22:48
  SPEAKER_01: Yeah, well clearly.
• 22:49
  SPEAKER_01: It's not a good thing.
• 22:50
  SPEAKER_03: Never say those airports, but we will go and educate them.
• 22:52
  SPEAKER_03: We'll do a podcast in their offices.
• 22:55
  SPEAKER_01: I will say Luton Airport's been amazing.
• 22:57
  SPEAKER_03: Yeah.
• 22:57
  SPEAKER_01: Luton Airport.
• 22:58
  SPEAKER_01: I I there was a woman uh um through the scanners and she said to me, like, Oh, my father has a stoma, so she was like, Oh, I know all about it, how are you finding it?
• 23:07
  SPEAKER_01: So you do find some gems.
• 23:08
  SPEAKER_04: Oh, I bet that was really like heartwarming for you as well.
• 23:12
  SPEAKER_00: It makes such a difference, doesn't it?
• 23:13
  SPEAKER_00: When you know, and that leads us nicely into that.
• 23:16
  SPEAKER_00: The next thing I was gonna ask you in representation, because it's thank you.
• 23:21
  SPEAKER_00: It's I mean, for I think it's it's not the same realm, but I I see stomas and I see I B D.
• 23:28
  SPEAKER_00: Yeah.
• 23:28
  SPEAKER_00: I don't have I B D.
• 23:30
  SPEAKER_00: So for me, I've always felt a bit like a black sheep in it all.
• 23:34
  SPEAKER_00: For yourself with a uurostomy, I you must relate to that even more.
• 23:39
  SPEAKER_00: I mean, how do you feel about that space?
• 23:41
  SPEAKER_00: And because you you have a presence online and you share so much, which is so valuable to people that will be in your position, but how did you feel when you first started trying to see people like you, trying to find that?
• 23:54
  SPEAKER_01: There's I would say two areas to that, and that is being a urolostomate and then being a young female with a urology condition.
• 24:03
  SPEAKER_01: So when you look at being a young female with a urology condition, whenever you get the leaflets, whether that's been about catheters, urology procedures, even my urostomy, nothing on there is about young women.
• 24:16
  SPEAKER_02: Yeah.
• 24:16
  SPEAKER_01: When I had my urolostomy surgery, the leaflet that I saw, it mentioned about male sex.
• 24:23
  SPEAKER_01: So when you have sex as a male, how it can affect that, nothing for women.
• 24:28
  SPEAKER_01: Absolutely nothing.
• 24:29
  SPEAKER_01: Wow.
• 24:30
  SPEAKER_01: Even when you look up medical documents, you can find a medical document about men after surgery for urostomies.
• 24:39
  SPEAKER_01: You can't for women.
• 24:41
  SPEAKER_01: So that is a very big It's a huge lack of representation.
• 24:44
  SPEAKER_04: It's a very lack of okay.
• 24:45
  SPEAKER_04: That's not okay.
• 24:46
  SPEAKER_01: And whenever you look at catheters and like the leaflets that come along with them, they are usually elderly people.
• 24:54
  SPEAKER_01: You don't see young people, and especially not young women.
• 24:58
  SPEAKER_01: So it's been very difficult because that lack of representation, it doesn't cover like bless her, my sister asked about what happens with periods and catheters, and I was like, it's it's different holes, but I think for some people that is still a thought that goes through their mind, regardless of you know, I knew I uh that wasn't something I really had to think about, but for some people who don't necessarily know, those are questions that are very hard to bring up to your doctor, but you should be able to access that information easily.
• 25:28
  SPEAKER_02: Yeah, 100%.
• 25:29
  SPEAKER_01: There's nothing, there's nothing about it, there's nothing to do with about when you have sex with a cafeteria or what about when you have your period, or there's nothing.
• 25:37
  SPEAKER_01: And it's very concerning, I would say, when you look at that.
• 25:41
  SPEAKER_01: But with yourostomies, a lot of stoma companies don't really offer the same amount of support for urostomies as they do for the other stomas.
• 25:52
  SPEAKER_01: So for one, I've noticed with a lot more stomas, there's kind of the options now of having like a black bag or a white bag, and they're, you know, opaque.
• 26:02
  SPEAKER_01: Not many companies offer that for urostomies and the options of different types of, you know, designs, there's a lot more limited in urostomies, and this is across a lot of the big companies.
• 26:17
  SPEAKER_01: So kind of when they speak about, you know, you need to feel confident in your bag and things like that, it's not really touched on as much with uurostomies when I think it's 10% of Eurostomies, uh Stomas is a Eurostomy, I believe the statistic is, I'm not necessarily too sure, but I believe it's like that.
• 26:35
  SPEAKER_01: And I don't see why there shouldn't be that focus.
• 26:39
  SPEAKER_02: Yeah, I can I completely agree.
• 26:41
  SPEAKER_01: When you know I know so many people with erostomies and it is so difficult to find products that are really suitable.
• 26:50
  SPEAKER_01: So I need convex bags for me because when I have leaks, my stoma goes flush, because as a as a rule, you don't really have as big of a stoma for urostomy.
• 27:00
  SPEAKER_01: They usually make them quite small.
• 27:01
  SPEAKER_01: Mine goes flush to my skin, and then I kind of get an air bubble where the urine kind of sits and it always ends up kind of going pop.
• 27:09
  SPEAKER_01: Yeah.
• 27:10
  SPEAKER_01: Um but when it comes to the options, there's not really a deep convex, even with the bags that I use, and I love it, is they still don't offer deep convex, they offer just a soft convex, which is what I use.
• 27:24
  SPEAKER_01: Realistically, I would much prefer a deep convex, but there's just not as many options, and it's really disheartening when you hear about you know ostomy awareness, which is great to have, but it's so limited when it comes to stomas.
• 27:39
  SPEAKER_01: Yeah, 100% and eurostomies.
• 27:42
  SPEAKER_01: I mean, when you see on the TV there's been the recent This Morning episode with I don't believe he touched on that there are urostomies.
• 27:51
  SPEAKER_00: Okay.
• 27:51
  SPEAKER_01: And when you want awareness, it is so important.
• 27:54
  SPEAKER_01: But at the same time, I've had doctors tell me that urostomies aren't a thing.
• 27:58
  SPEAKER_01: And these are doctors.
• 27:59
  SPEAKER_04: What how?
• 28:00
  SPEAKER_01: They'll go, oh so you have a ca have a catheter, and I say, No, I have a urostomy.
• 28:05
  SPEAKER_04: Look.
• 28:06
  SPEAKER_01: Yeah, and he's like so frustrating.
• 28:08
  SPEAKER_01: He's like, so you still go toilet normally?
• 28:09
  SPEAKER_01: And I was like, I don't have a bladder.
• 28:11
  SPEAKER_01: So I can't go toilet normally.
• 28:13
  SPEAKER_01: This is what my stoma is.
• 28:16
  SPEAKER_01: And even then sometimes they don't understand it.
• 28:19
  SPEAKER_01: So when you say about a lack of representation, I mean even when it comes to medical fields, not a lot of people know what they are.
• 28:25
  SPEAKER_04: Gosh, it even crosses over to the It's it sounds like it's a forgotten stoma sort of thing.
• 28:30
  SPEAKER_04: Do you know what I mean?
• 28:30
  SPEAKER_01: And I'd like to That's the term that's coined, it's the forgotten stoma.
• 28:34
  SPEAKER_04: And I'm like, look, you know, that's the f the fact that you're here telling your story, you know, having your presence on social media only help raise awareness and for for it.
• 28:43
  SPEAKER_01: I mean everyone knows about trolls online.
• 28:45
  SPEAKER_01: I've had so many people comment on my post saying, like, you're lying about it because you can only have, you know, an ileostomy or colostomy.
• 28:52
  SPEAKER_01: I'm like, no, I have a uuromy.
• 28:54
  SPEAKER_01: Like you're lying.
• 28:55
  SPEAKER_01: You can't have that.
• 28:56
  SPEAKER_01: Horrendous.
• 28:58
  SPEAKER_01: Wow.
• 28:58
  SPEAKER_01: I don't know.
• 28:59
  SPEAKER_01: It's mind-boggling some of the stuff you see and you hear, and like the comments I've had on my page because basically like, well, that doesn't exist.
• 29:07
  SPEAKER_01: But I've lived it.
• 29:08
  SPEAKER_01: You're living it.
• 29:09
  SPEAKER_01: Yeah.
• 29:10
  SPEAKER_01: You're living it.
• 29:10
  SPEAKER_04: You're living proof.
• 29:11
  SPEAKER_01: And people can have it right in front of them and they still just don't get it.
• 29:15
  SPEAKER_01: Well, that's ignorance, isn't it?
• 29:16
  SPEAKER_04: Oh, 100%.
• 29:17
  SPEAKER_00: So I'm so sorry you've gone through that.
• 29:18
  SPEAKER_00: Yeah.
• 29:19
  SPEAKER_04: There's one thing I was going to ask around this, because obviously you said about your partner, and your partner was there when you know change your bag and stuff like how has everything been like in a relationship sense with having a a erostomy and all those sorts of things?
• 29:31
  SPEAKER_04: Because I imagine that must have been challenging to navigate as well.
• 29:34
  SPEAKER_01: Lucky that my partner is so open-minded.
• 29:38
  SPEAKER_01: He's very much just he he's always like, Oh, you're different, and I like different, so he's very supportive.
• 29:45
  SPEAKER_00: That's such a lovely winter.
• 29:48
  SPEAKER_01: Yeah, he's not really he's not really squeamish.
• 29:51
  SPEAKER_01: So with all my appointments, he's been there.
• 29:53
  SPEAKER_01: And when I first got with him, I mean we've been together almost seven years now.
• 29:57
  SPEAKER_01: So he's been the whole way through my journey.
• 30:00
  SPEAKER_01: He was with me and I see you when I woke up from surgery.
• 30:03
  SPEAKER_01: He's very much just been it is what it is.
• 30:07
  SPEAKER_01: We just need to learn how to get on with it.
• 30:09
  SPEAKER_01: Um, and when I've been upset about it, he's like, but you're still beautiful, so like you know.
• 30:14
  SPEAKER_01: Yes, you are.
• 30:15
  SPEAKER_01: Thank you.
• 30:16
  SPEAKER_01: Oh, what's his name?
• 30:18
  SPEAKER_01: Jack.
• 30:18
  SPEAKER_04: Shout out to Jack.
• 30:19
  SPEAKER_04: Lovely Jack.
• 30:22
  SPEAKER_01: So no, it's been it's been really great.
• 30:25
  SPEAKER_01: I mean, there's obviously not without challenges.
• 30:28
  SPEAKER_01: Yeah.
• 30:28
  SPEAKER_00: Yeah.
• 30:28
  SPEAKER_01: But I mean, you look at intimacy, that's a very complete different world when you have a stoma.
• 30:34
  SPEAKER_01: And I've heard that with other stomas you can flip it up and kind of some of them you can have it so they both grow up.
• 30:40
  SPEAKER_01: Oh, like the bags, yeah.
• 30:41
  SPEAKER_01: That doesn't happen with uurostomies, so we don't have that option.
• 30:45
  SPEAKER_04: So there's a lot of different things and so like I imagine you had no guidance in that as well when you were with your doctors and things.
• 30:53
  SPEAKER_04: So Yeah, gosh.
• 30:56
  SPEAKER_01: I wasn't told this and so I didn't have a full bladder removal.
• 31:01
  SPEAKER_01: However, however, with your bladder, it backs onto your vagina as a female.
• 31:06
  SPEAKER_01: So when they do a bladder removal, you can risk them basically cutting into your vagina and shortening your vagina.
• 31:13
  SPEAKER_01: And for some women who have had complete removals, it's shortened their vagina and basically they can't then have penetration because of this surgery.
• 31:24
  SPEAKER_01: And I mean, I have noticed a difference with my partner.
• 31:27
  SPEAKER_01: We've said that there's been a change, and for a lot of people they aren't told this risk.
• 31:34
  SPEAKER_01: So I wasn't told about this at all.
• 31:37
  SPEAKER_01: They'd said to me they didn't want to remove my urethra because of basically sex, and I think that's a completely different mindfield on its own.
• 31:47
  SPEAKER_01: Um, but they didn't really say much about how it could affect you.
• 31:53
  SPEAKER_01: And I know so many people who have had it, and then they live with the repercussions because they weren't told.
• 31:59
  SPEAKER_01: And even though the surgery is needed, I still think you need to be prepared.
• 32:03
  SPEAKER_01: Yes.
• 32:04
  SPEAKER_01: And that preparation is just never there.
• 32:07
  SPEAKER_01: No.
• 32:07
  SPEAKER_04: 100% needs it.
• 32:09
  SPEAKER_04: It's so like honestly, hearing all your story, you've gone through so much and just like it sounds like like not ignorance and negligence from people as well in the medical field who should be like, This is what you need, etc.
• 32:21
  SPEAKER_04: But I'm gonna change it ever so slightly because you know, you're here today, you're talking about your things.
• 32:25
  SPEAKER_04: How have you managed to build your own confidence to speak up and you know, start your page, like and even get more confident in your in yourself and your body?
• 32:35
  SPEAKER_01: I think when I first had my catheter, I'd had so many comments of you shouldn't wear this because your catheter's showing.
• 32:42
  SPEAKER_01: Or like, I love to wear dresses and things like that, and the leg bag would kind of finish at your knee or just below your knee when you wore a shorter one.
• 32:52
  SPEAKER_01: You can get long ones, but when I wore a shorter one, it would still end at my knee because I'm quite a short person.
• 32:57
  SPEAKER_01: I'm only like five foot three, so it always ends quite long on me.
• 33:00
  SPEAKER_01: So if I wore a dress, my kafata would show, and I had a lot of people say to me, like, Oh, you shouldn't wear that, and I didn't want to change who I was because of my kaffata or my issues, so yeah, too right.
• 33:13
  SPEAKER_01: Yeah, so I started posting it because it was kind of like, Well, I've got to deal with it, so might as well post it.
• 33:19
  SPEAKER_01: And I started getting a lot of comments from people saying, like, you've really helped me, and oh, amazing.
• 33:25
  SPEAKER_01: Because it's a rare condition, a lot of people have these symptoms and don't know what's causing it.
• 33:32
  SPEAKER_01: So I've had so many people kind of reach out and say, I've been having this symptom and I'd never heard of Fowler syndrome, and I've now mentioned it to my doctor, and they didn't know about Fowler syndrome, and they're now looking into it for me, and now I'm getting the help I need.
• 33:48
  SPEAKER_01: And I've seen some people from messaging me a couple years ago, and now they've got stomas or they've got, you know, treatment plans that have really worked helped, and I've seen them from kind of this initial stage to now kind of a lot further in their own journey.
• 34:02
  SPEAKER_01: So I think just seeing stuff like that really confirmed that actually it's worth talking about because it's helped other people.
• 34:09
  SPEAKER_01: 100%.
• 34:10
  SPEAKER_01: And it's kind of like it's not a great situation, but if there can be a positive out of it, then that's amazing.
• 34:16
  SPEAKER_00: So And it's such it's so lovely that you've got that mindset.
• 34:20
  SPEAKER_00: But have have you always had that mindset or have you had to work hard to get to this point?
• 34:25
  SPEAKER_01: I've always had health issues, so I think it's kind of it's not necessarily surprising.
• 34:32
  SPEAKER_01: I don't know how to word it.
• 34:33
  SPEAKER_01: I kind of have been used to having those challenges, so me adapting to it's maybe not been as hard as if someone who'd had no prior issues.
• 34:44
  SPEAKER_01: Um, but I mean I can't say it's without its challenges, and there's days where I would just cry and it's like not the like almost like why me, like, you know, why has this happened or how could I have prevented it?
• 34:57
  SPEAKER_01: And there's no way I could have prevented it.
• 34:59
  SPEAKER_01: But I still think you kind of question those things, but like uh I'm very much fake it till you make it.
• 35:05
  SPEAKER_01: I want to be confident, so even if I don't feel confident, I'll try and fake it, and then hopefully along the way it'll kind of build up.
• 35:13
  SPEAKER_00: So yeah, definitely.
• 35:15
  SPEAKER_00: 100% when you get messages from people through your socials, what is one of the most common things you're asked?
• 35:22
  SPEAKER_01: I think it's just a generic kind of stoma questions.
• 35:25
  SPEAKER_01: I think a lot of people ask about does it hurt?
• 35:28
  SPEAKER_01: Does it move?
• 35:29
  SPEAKER_01: Does it act in the same way?
• 35:30
  SPEAKER_01: And all those questions are yes, so it still wriggles like a normal stoma.
• 35:34
  SPEAKER_01: Yeah.
• 35:35
  SPEAKER_01: Um I think it's just realistically how different is it?
• 35:41
  SPEAKER_01: I think a lot of the people I've spoken to have had catheters, and it's kind of like how different is it in comparison to that.
• 35:49
  SPEAKER_01: I would say kind of on with that I'd adapted so much better, I think, because I'd had my catheter.
• 35:56
  SPEAKER_01: Oh, okay.
• 35:57
  SPEAKER_01: So I was very used to handling a medical device because of the catheter, so the adaptation to it wasn't actually as shocking as kind of you'd think it would be.
• 36:10
  SPEAKER_01: But I mean, personally, I prefer my stoma compared to my catheter.
• 36:16
  SPEAKER_01: Just because my catheter was very unpredictable.
• 36:20
  SPEAKER_01: I'd have so many leaks.
• 36:22
  SPEAKER_01: Yeah.
• 36:22
  SPEAKER_01: Because a catheter's it's like a plug, you'd you'd attach it to a night bag and then you'd change or your day bag, sorry, and then your day bag you'd change once a week.
• 36:32
  SPEAKER_01: And it'd always pop off from the catheter, and then I'd wake up to a bed completely soaked.
• 36:38
  SPEAKER_00: Oh god.
• 36:38
  SPEAKER_01: Which bear in mind my partner lived through that as well.
• 36:41
  SPEAKER_01: So it'd be two o'clock in the morning, we'd both be getting showers because we are covered in wee, the bed's covered in we've having to get like the mattress protectors and the waterproof ones because and it was happening so often, and I mean touch wood, my stoma hasn't leaked in the night.
• 36:57
  SPEAKER_01: I think it's leaked once in 18 months.
• 37:00
  SPEAKER_01: So that's that's really I can't really complain.
• 37:03
  SPEAKER_00: Yeah, and do you do you have to use seals or any extra things, or is it literally just the bag?
• 37:11
  SPEAKER_00: I use a paste.
• 37:12
  SPEAKER_00: Ah, okay.
• 37:13
  SPEAKER_01: Because my stoma goes quite flat, I have to use a paste to help with that, and the urine breaks it down quite quickly.
• 37:20
  SPEAKER_01: So I changed my bag.
• 37:23
  SPEAKER_01: It was it every every day, and I've got it to roughly every two or three days now if I'm being lazy.
• 37:28
  SPEAKER_01: Wow, that's brilliant.
• 37:29
  SPEAKER_00: That's really good.
• 37:30
  SPEAKER_01: Yeah, I have to change every day.
• 37:32
  SPEAKER_01: Yeah.
• 37:32
  SPEAKER_01: So that's it was every day.
• 37:34
  SPEAKER_01: I got it to roughly every two days, but I'm having to use extenders and things like that, and that's normally a bit better.
• 37:38
  SPEAKER_01: But I get quite sensitive skin, so the more I change, it just breaks down so badly.
• 37:44
  SPEAKER_00: So brilliant.
• 37:46
  SPEAKER_00: Well, one thing that we ask all our guests is to bring a photo in of something that means to them.
• 37:52
  SPEAKER_00: So let's have a look at yours.
• 37:53
  SPEAKER_01: So this is my photo.
• 37:56
  SPEAKER_00: We know what this is, don't we?
• 37:57
  SPEAKER_00: And we've seen this.
• 37:59
  SPEAKER_01: So this is from my trip to China.
• 38:03
  SPEAKER_01: The trip was amazing.
• 38:05
  SPEAKER_01: It was definitely something that it was a struggle with my health.
• 38:10
  SPEAKER_01: It was very hard, it was a lot of hard work.
• 38:12
  SPEAKER_01: However, getting there and experience in it was so amazing.
• 38:18
  SPEAKER_02: Worth it.
• 38:18
  SPEAKER_01: So with my stoma, I feel like travel has become a little bit more accessible.
• 38:24
  SPEAKER_01: Okay.
• 38:25
  SPEAKER_01: Whereas some people might think it's gonna stop them.
• 38:27
  SPEAKER_01: Yes.
• 38:28
  SPEAKER_01: So something that with a cafeteria you learn you can't really use saunas, you can't go swimming because of risk of infection.
• 38:37
  SPEAKER_01: So with the superpubic cafeter, because it was an open wound, I couldn't go swimming.
• 38:43
  SPEAKER_01: So I couldn't go into the sea, I couldn't go into saunas, so anything kind of like that, I had to be so careful and it just couldn't be a part of my travel.
• 38:54
  SPEAKER_01: So with the stoma, I've been able to do those things again.
• 38:57
  SPEAKER_01: So with travelling, I've been able to see a lot more places and have a lot more experiences because of it.
• 39:03
  SPEAKER_01: Yeah.
• 39:04
  SPEAKER_01: Fantastic.
• 39:06
  SPEAKER_04: Speaking of travelling, any nice plans coming up then for s for more holidays this year?
• 39:11
  SPEAKER_01: None guaranteed.
• 39:12
  SPEAKER_01: I really want to go to Japan.
• 39:14
  SPEAKER_01: So I'm fingers crossed for that for the end of the year for my birthday.
• 39:17
  SPEAKER_04: But oh well, we'll keep our fingers crossed if you can get out there.
• 39:22
  SPEAKER_04: And then the final thing we tend to ask all everyone really is like, what advice would you give somebody who's like newly adjusting to life with a erostomy?
• 39:31
  SPEAKER_01: I think it's realistically just don't put any pressure on yourself.
• 39:35
  SPEAKER_01: At the beginning, when I first had my surgery, I'd wanted to be out of bed within a certain amount of time, and I kind of pictured recovery in a certain way, and it definitely wasn't that way.
• 39:46
  SPEAKER_01: No, it wasn't that way.
• 39:48
  SPEAKER_01: They told me I'd be admitted for five days and one night in ICU.
• 39:51
  SPEAKER_01: I had five nights in ICU and a two-week admission, okay, and then readmitted on Christmas Day.
• 39:58
  SPEAKER_01: So it definitely wasn't a plan, and I think that was the wake-up call of I can't I can't make it look a certain way.
• 40:06
  SPEAKER_01: And realistically, even obviously 18 months isn't necessarily a long amount of time, but my journey is so up and down, and there are days I really love how I look, and there are days where I really hate everything to do with it.
• 40:20
  SPEAKER_01: And I think just not putting that pressure on myself to feel a certain way has been really freeing.
• 40:26
  SPEAKER_02: Yeah.
• 40:26
  SPEAKER_01: I think a lot of people either tell you to get on with it or you expect your journey to look a certain way, and it can't.
• 40:33
  SPEAKER_01: You can't put barriers on those things.
• 40:35
  SPEAKER_01: And I think when you remove those barriers, it makes you feel a lot better than what you think you would have.
• 40:41
  SPEAKER_04: Yeah.
• 40:41
  SPEAKER_04: It's a really good shout.
• 40:42
  SPEAKER_04: So And everyone's journey is different as well.
• 40:45
  SPEAKER_04: And it's so unique to you and what you need, so you can't you can't compare it.
• 40:49
  SPEAKER_01: I think I'd had so many thoughts of like, oh, I won't have infections and I'll get back on my feet.
• 40:55
  SPEAKER_01: And to begin with, I didn't.
• 40:57
  SPEAKER_01: Now I'm having infections every few weeks, and it's just kind of part of having the stoma.
• 41:02
  SPEAKER_01: But yeah, it's not a one-size-fits-all, and I don't think any stoma journey is a one-size-fits-all.
• 41:07
  SPEAKER_01: No.
• 41:08
  SPEAKER_04: Would you recommend people reaching out to if they've got fouler syndrome, reaching out to the the organisation as well?
• 41:14
  SPEAKER_01: Yes, they're a very amazing charity.
• 41:16
  SPEAKER_01: They don't they've now got a nurse helpline, I believe, so you can bring up that was the first worldwide, I believe.
• 41:24
  SPEAKER_01: Um and they're the first worldwide charity to be doing what they're doing as well.
• 41:27
  SPEAKER_01: So I'd always recommend it.
• 41:29
  SPEAKER_01: I mean, next week I'm going down to London with them and they're doing a meetup.
• 41:33
  SPEAKER_01: So they're always doing some amazing things and a lot of awareness.
• 41:37
  SPEAKER_01: They have just done a first-time conference for teaching professionals about Fowler syndrome.
• 41:43
  SPEAKER_01: Finally.
• 41:44
  SPEAKER_01: Finally.
• 41:45
  SPEAKER_01: So there was professionals flying in from all over the world.
• 41:49
  SPEAKER_01: Yeah.
• 41:50
  SPEAKER_01: I believe it was at UCLH, and they're teaching people about what Fowlers is and really educating people.
• 41:57
  SPEAKER_01: So I'm hoping that the stuff they're doing, they're doing research, is all going in the right way.
• 42:03
  SPEAKER_01: So definitely reach out for them.
• 42:04
  SPEAKER_00: Well, thank you so much for coming here and shining a light on all this because there's so much to take from this.
• 42:11
  SPEAKER_00: So I hope you know how proud you should be for yourself.
• 42:15
  SPEAKER_00: Thank you.
• 42:16
  SPEAKER_00: It's brilliant.
• 42:16
  SPEAKER_00: Keep sharing and doing what you're doing.
• 42:18
  SPEAKER_00: Thank you.
• 42:18
  SPEAKER_00: Yeah, keep reading from the front.
• 42:19
  SPEAKER_00: There you go.
• 42:20
  SPEAKER_00: Thank you, Amy.
• 42:23
  SPEAKER_02: Thank you.