Latest / Beyond the Pouch / Lucy on Common Stoma Problems from a Clinical Perspective - International Nurse's Day | Beyond the Pouch S3 E2

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Lucy on Common Stoma Problems from a Clinical Perspective - International Nurse's Day | Beyond the Pouch S3 E2 · Beyond the Pouch

• 0:00
  SPEAKER_00: You look down, you see this bag.
• 0:02
  SPEAKER_00: I think for a lot of people it's panic, it's you're scared, you don't you you just so many things going through your head, and you're the people that walk in and go, let me show you, let me help you, and yeah.
• 0:13
  SPEAKER_01: For me, it just m it it's so lovely to know that you're making a difference.
• 0:17
  SPEAKER_03: We're gonna talk about some like common stoma issues.
• 0:20
  SPEAKER_03: So lots of um people who speak to me worry about like sore skin.
• 0:23
  SPEAKER_03: There's lots of people that get um like bleeding around their stoma.
• 0:27
  SPEAKER_01: It's that cycle of you have a leak, skin gets sore, there has to be something changed on it, but you don't know what it is.
• 0:34
  SPEAKER_01: You put the bag back on, but then you've got sore skin on top of that, and that's gonna continue that cycle until you break it.
• 0:40
  SPEAKER_00: Now, hernias is something that is a huge topic.
• 0:44
  SPEAKER_01: But there is ways to reduce it, and with a hernia, prevention is always better than cure.
• 0:49
  SPEAKER_01: I I've had patients who woke up with a stoma and didn't even know what a stoma was before.
• 0:55
  SPEAKER_01: Imagine what that must feel like.
• 0:57
  SPEAKER_01: It's just important to be kind to yourself and all of that, and as you're going through that journey.
• 1:07
  SPEAKER_00: Okay, welcome to episode two, guys.
• 1:09
  SPEAKER_00: Back with Beyond the Pouch in our lovely new setting.
• 1:13
  SPEAKER_00: I'm back with Ant.
• 1:14
  SPEAKER_03: Hello, hello.
• 1:15
  SPEAKER_03: How are we?
• 1:16
  SPEAKER_00: Good, good, good.
• 1:17
  SPEAKER_00: Now we have got a very, I would say this episode is going to be something that people are really keen to listen to.
• 1:22
  SPEAKER_03: So honestly, I'm so excited for this.
• 1:24
  SPEAKER_00: Now we are celebrating International Nurses Day.
• 1:28
  SPEAKER_00: Now, the nurse is someone, the stoma nurse, that the first person, one of the first people we see when we wake up and have had stoma surgery.
• 1:36
  SPEAKER_00: And for a lot of people, it's the first person that sees you with your bag.
• 1:40
  SPEAKER_00: And I don't think that ever leaves you.
• 1:42
  SPEAKER_03: No, it doesn't.
• 1:43
  SPEAKER_03: And you can have like really strong relationships with your stoma nurses, and I hopefully all of you like regularly see your stoma nurses and genuinely like uh get on with them.
• 1:51
  SPEAKER_03: Like I know when I had my stoma for the first time, uh, my stoma nurse team were incredible.
• 1:56
  SPEAKER_03: They were so helpful, they answered all of my questions, and today we're gonna be answering so many more questions to the wonderful Lucy, who is gonna be a former stoma nurse and a clinical advisor for Ekin.
• 2:07
  SPEAKER_03: I can't wait to get her on and just get to know more about her and um and these topics.
• 2:12
  SPEAKER_00: We're gonna be covering things like ballooning, pancaking, hernia, odor, blockages, the work.
• 2:19
  SPEAKER_00: So if you have that kind of thing going on and you want to hear from an expert, then this is the episode for you.
• 2:25
  SPEAKER_03: Let's get right into it.
• 2:26
  SPEAKER_03: Let's do it.
• 2:27
  SPEAKER_03: So, second episode of Beyond the Pouch Podcast, we have the lovely Lucy with us today that's come all the way over from Ireland, and I'm so excited to have you on.
• 2:36
  SPEAKER_03: Um, we're gonna talk lots of things today around Stoner's like the nursing side of things, because we're gonna have a lot of listeners, it'll be really key.
• 2:43
  SPEAKER_00: This is gonna be a good one.
• 2:44
  SPEAKER_03: Oh, it's gonna be exceptional.
• 2:46
  SPEAKER_03: But before we start, can we just have a little bit about you, how you got into like your field, your pairs of expertise, stuff aren't that?
• 2:53
  SPEAKER_01: Absolutely, and I just want to say it's an absolute privilege to be here and to join today's.
• 2:59
  SPEAKER_01: So much for having me here today.
• 3:01
  SPEAKER_01: Um, so I have to be completely honest, when I started nursing, I didn't know what a stoma was.
• 3:06
  SPEAKER_01: I still remember the first time I seen a stoma and I thought, had all the thoughts, is it painful?
• 3:11
  SPEAKER_01: Can it get infected?
• 3:12
  SPEAKER_01: All of those questions, and it was just really interesting to learn about it.
• 3:17
  SPEAKER_01: Then I spent again as a student nurse, I spent a day in the outpatient's department with patients coming in who are out in the community with their stomas, and I just remember that day feeling so good going home because I just thought that it was so lovely to be able to support patients that are a lot of the time maybe are just after finishing their chemotherapy journey, if they've had a cancer diagnosis, or with IBD and finding this new lease of life now that they've had a stoma.
• 3:46
  SPEAKER_01: So that's really where I'd uh piqued my interest in wanting to work in stomach care.
• 3:51
  SPEAKER_01: And then in 2014 I started working in stomach care and in along with that, then I really wanted to understand from a psychological point of view how I could support patients a little bit more.
• 4:03
  SPEAKER_01: So I think it was 2018 then I started a degree and another degree in counselling and psychotherapy.
• 4:12
  SPEAKER_01: So I'm also an accredited counsellor and psychotherapist as well.
• 4:18
  SPEAKER_01: Um and so I work in both at the moment.
• 4:20
  SPEAKER_01: And it's coming up to my year anniversary now, um, working as a clinical advisor with Eakin, which I absolutely love.
• 4:27
  SPEAKER_01: Fantastic.
• 4:28
  SPEAKER_03: So is that like more uh forgive me, things like CBT and stuff like that?
• 4:33
  SPEAKER_03: My psychotherapy, is it?
• 4:34
  SPEAKER_01: Yeah.
• 4:34
  SPEAKER_01: So it is um when I didn't know what I was gonna do, and like everything in life, it's not a one-size-fits-all for us all.
• 4:42
  SPEAKER_01: So I my degree was in an integrated, so what we did was humanistic, which is very much just speaking, just allowing the pay the client to discover where they want to go with it.
• 4:55
  SPEAKER_01: Um psychodynamics is very much looking at childhood and how that would have shaped us, and also CBT was an element in the um in my undergraduate.
• 5:03
  SPEAKER_01: It's absolutely interesting.
• 5:04
  SPEAKER_01: Um and now I'm currently doing a master's in CBT just to improve that as well.
• 5:08
  SPEAKER_01: So um I absolutely love CBT and the power of our mind just fascinates me.
• 5:13
  SPEAKER_00: So if anyone's got you as a stoma nurse, they are winning.
• 5:15
  SPEAKER_00: Yeah.
• 5:16
  SPEAKER_00: And they've got like that.
• 5:19
  SPEAKER_01: And to a certain extent, actually, probably I thought it would change me an awful lot more as a stomach care nurse, but I am very good at setting those boundaries.
• 5:29
  SPEAKER_01: I don't think that you can be a stomach care nurse and a psychotherapist to the same person.
• 5:33
  SPEAKER_01: So I'm very aware that in my role I'm a stomach care nurse and in another role.
• 5:38
  SPEAKER_01: And I have worked with a lot of people um in my psychotherapy journey who have stomas, but I wouldn't be their nurse as well.
• 5:44
  SPEAKER_01: So I do think it's important that I keep those boundaries.
• 5:47
  SPEAKER_01: Has it helped you though?
• 5:48
  SPEAKER_00: Has it made you see things different, or do you strictly keep there is no crossover at all?
• 5:52
  SPEAKER_01: Well it's definitely helped me just understanding even the mind-body connection.
• 5:57
  SPEAKER_01: Um, you know, our thoughts impact so much on the body.
• 6:03
  SPEAKER_01: Um when we're anxious, we tense up, and that's uh a huge part of it.
• 6:08
  SPEAKER_01: Um so it's definitely helped me and give me a much better understanding.
• 6:12
  SPEAKER_01: But do you know what it's really really given me appreciation for is how amazing nurses are.
• 6:19
  SPEAKER_01: So it's just it's helped me with that as well.
• 6:22
  SPEAKER_01: And the more I do in it, the more it's such a privilege to be a nurse as well.
• 6:27
  SPEAKER_01: What a journey.
• 6:27
  SPEAKER_03: What a story.
• 6:29
  SPEAKER_03: It's incredible.
• 6:31
  SPEAKER_03: So you started your career not really knowing much about stomachs, then like you fell in love with it, like helping.
• 6:36
  SPEAKER_03: I've got to be brutally honest.
• 6:38
  SPEAKER_03: I can't I can't thank you.
• 6:40
  SPEAKER_03: And all the stoma nurses out there enough.
• 6:42
  SPEAKER_03: It is a probably a thankless task.
• 6:44
  SPEAKER_03: You probably don't get a lot of people saying thank you for everything you do, but genuinely, bottom of my heart, we'd be nowhere without stomachs.
• 6:50
  SPEAKER_02: Oh yeah.
• 6:51
  SPEAKER_03: I'd have absolutely no idea.
• 6:52
  SPEAKER_03: Like I wouldn't know how to well, I I'd figure out putting a bag on, but knowing me, I wouldn't know if it was a big thing.
• 6:57
  SPEAKER_00: Well you're the first people when we wake up, you don't your surgeon doesn't come and see you, do they?
• 7:01
  SPEAKER_00: It's your stominus normally.
• 7:04
  SPEAKER_00: And you look down, you see this bag.
• 7:06
  SPEAKER_00: I think for a lot of people it's panic, it's you're scared, you don't you you just so many things go in through your head, and you're the people that walk in and go, let me show you, let me help you, and yeah.
• 7:17
  SPEAKER_01: And it might sound corny, but I just think that's such an honour.
• 7:20
  SPEAKER_01: It's so lovely to be able to go and support patients when they wake up on that journey.
• 7:27
  SPEAKER_01: So I don't see uh and I have to say I think patients are really, really s really appreciative of it.
• 7:33
  SPEAKER_01: Yeah, and we do hear it quite a lot, and it is lovely to hear, but it for me it just m it it's so lovely to know that you're making a difference to people's lives.
• 7:42
  SPEAKER_01: Massively.
• 7:42
  SPEAKER_01: We can't always get it right, we're not perfect, but it's just doing our best with it as well.
• 7:46
  SPEAKER_00: And it's having someone there, isn't it?
• 7:48
  SPEAKER_00: Just a human that you know knows about it.
• 7:51
  SPEAKER_00: Because some people, they might not even it might have been an emergency, they might have not even planned it.
• 7:56
  SPEAKER_00: So for you to come in and go, right, I am a stoma nurse, I can help you.
• 8:00
  SPEAKER_00: It's massive, massive, huge, huge.
• 8:04
  SPEAKER_01: And I suppose I'm so conscious, we do it all day.
• 8:07
  SPEAKER_01: Every day I might see uh uh I don't know how many stomas a day.
• 8:12
  SPEAKER_01: But every person that I'm going to is only seeing their stoma.
• 8:15
  SPEAKER_01: And that's you know, so I I'm always mindful that to me I don't give it a second thought.
• 8:21
  SPEAKER_01: But for someone who's newly getting a stoma, it is it's a it takes up a lot of of space in their in their thought process.
• 8:29
  SPEAKER_03: 100%.
• 8:29
  SPEAKER_03: And also like from a patient's perspective, you're the person with all the experience, and like my own experience with stoma nurse has been have always been good.
• 8:37
  SPEAKER_03: I know some people don't, but like hearing that you're so caring, you want to help people, like honestly is really refreshing.
• 8:43
  SPEAKER_03: And also just like it's genuine.
• 8:44
  SPEAKER_03: Like do you know what I mean?
• 8:45
  SPEAKER_03: There's so many people that won't get that connection.
• 8:48
  SPEAKER_03: And part today Good segue again.
• 8:50
  SPEAKER_03: Is we're gonna talk about some like common stoma issues.
• 8:53
  SPEAKER_03: Now you've been how long have you been a stoma nurse for again?
• 8:56
  SPEAKER_01: I've been a stoma nurse since 2014.
• 8:58
  SPEAKER_01: Wow.
• 8:58
  SPEAKER_01: So I started then.
• 9:00
  SPEAKER_01: Oh, the things you must have seen.
• 9:02
  SPEAKER_00: It's a shame you didn't bring videos and photos and you couldn't show us visuals.
• 9:05
  SPEAKER_00: So you're gonna have to describe stuff for us.
• 9:07
  SPEAKER_01: Yeah, well, I I suppose it's very much just general talking today because everybody's so different.
• 9:12
  SPEAKER_01: So it's just very general overview um and some advice.
• 9:16
  SPEAKER_01: Some will work for people, some won't.
• 9:19
  SPEAKER_01: And it's just I don't know how you feel when I say this, but I do think sometimes it's trial and error.
• 9:24
  SPEAKER_00: Oh, massively.
• 9:26
  SPEAKER_00: Because there's no there's no one answer fix-all, is there?
• 9:29
  SPEAKER_00: No.
• 9:29
  SPEAKER_00: And everyone's stoma is different, everyone's stoma behaves differently.
• 9:33
  SPEAKER_00: I had stoma surgery for the second time in 2020, and then I had it refashioned five weeks later.
• 9:40
  SPEAKER_00: So I've had three stomas, and not one of them was the same, not one of them was managed the same, and it's for you to be able to, you know, help everyone with their different stomas, the knowledge and the experience you must have accumulated over that time is massive.
• 9:53
  SPEAKER_00: So let's get into it.
• 9:54
  SPEAKER_03: Let's get into it.
• 9:55
  SPEAKER_03: One thing, now I don't really experience this, I don't know if you do.
• 9:58
  SPEAKER_03: No.
• 9:58
  SPEAKER_03: But I hear ballooning a lot.
• 10:00
  SPEAKER_03: Like, what is that?
• 10:01
  SPEAKER_03: Like, does that mean my stomach's gonna take off?
• 10:03
  SPEAKER_03: Like, what is it?
• 10:04
  SPEAKER_01: So what that means is we are all passing wind.
• 10:07
  SPEAKER_01: It's natural parts of the digestive system, but it goes into the atmosphere and nobody notices unless there's a sound with it.
• 10:14
  SPEAKER_01: But nor so what happens when you have a storm is we're still passing wind, but now it's going into a bag where it's going to be contained.
• 10:22
  SPEAKER_01: Now there is filters, and filters have come on so much in the last few years, and they're continu yeah, they're continuously improving.
• 10:29
  SPEAKER_01: Um, but they can only manage so much wind.
• 10:32
  SPEAKER_01: So if for some reason you're producing more wind than you would have before, or if something's changed, there's nowhere for that wind to go while it's waiting to escape out through that filter.
• 10:42
  SPEAKER_01: So that's when you get the ballooning around it.
• 10:44
  SPEAKER_03: Ah, I see.
• 10:44
  SPEAKER_03: So it's nothing to do with like air getting in from like outside the bag, it's just you know that we expect.
• 10:51
  SPEAKER_03: So then like are there certain types of food or like dietary things that can help reduce wind output and ballooning?
• 10:58
  SPEAKER_01: Dietary, absolutely.
• 10:59
  SPEAKER_01: And I do I tend not to go into specifics around diet because everybody is different.
• 11:03
  SPEAKER_01: I could recommend one to one person and they could say, Oh no, that causes me a lot of ballooning and something else to some and so everybody is different.
• 11:10
  SPEAKER_01: But what I would say is even trying a natural yogurt that can be good for the to promote healthy bacteria in the gut, yeah, and that can improve it as well.
• 11:20
  SPEAKER_01: Um, as we're talking, we're swallowing air.
• 11:22
  SPEAKER_01: When we're eating, we're swallowing air.
• 11:24
  SPEAKER_01: So there's little tips, even try and have your main meals throughout the day.
• 11:29
  SPEAKER_01: Um, take your time when you're eating as well.
• 11:31
  SPEAKER_01: Yeah, 100%.
• 11:33
  SPEAKER_01: And I still I was only talking about it the other day.
• 11:35
  SPEAKER_01: I still, when I'm eating from working on the wards, I still eat so fast.
• 11:42
  SPEAKER_01: I need to be more mindful about my eating as well and just slowing it down as well.
• 11:46
  SPEAKER_01: Um what a lot of people find as well is in the morning there's more air in their bag than normal.
• 11:52
  SPEAKER_01: And I suppose there's a lot of um there is a lot of time where it hasn't been emptied.
• 11:58
  SPEAKER_01: Yeah.
• 11:58
  SPEAKER_01: Um and you relax when you're sleeping.
• 12:00
  SPEAKER_01: And well, it's an extra long clock for me.
• 12:03
  SPEAKER_01: Yeah.
• 12:03
  SPEAKER_01: Wakes me up at five.
• 12:06
  SPEAKER_01: And if you snore, or even if you just sleep with your mouth open, you're going to swallow more air as well.
• 12:11
  SPEAKER_01: So there's those little tips as well.
• 12:12
  SPEAKER_01: And that's hard because we don't know if how when we're asleep, we don't know what position our mouths are in.
• 12:18
  SPEAKER_01: No.
• 12:18
  SPEAKER_01: Um so there's all those little tips.
• 12:20
  SPEAKER_01: How to manage it.
• 12:21
  SPEAKER_01: If you have a drainable bag, just in the privacy of a toilet, just let some air out of it.
• 12:26
  SPEAKER_01: Yeah.
• 12:26
  SPEAKER_01: Um, if you have a closed bag, and it's often more common with colostomies, so if you have a closed bag, maybe just try a two-piece if it's a big problem.
• 12:34
  SPEAKER_01: And then you can let it out if you don't have to change the bag.
• 12:37
  SPEAKER_00: I suppose you don't have to keep changing your whole bag when you've got ways for air.
• 12:41
  SPEAKER_00: Yeah.
• 12:42
  SPEAKER_00: Um I know for me, one thing that I experienced was wind pain.
• 12:46
  SPEAKER_00: Okay.
• 12:47
  SPEAKER_00: Post surgery.
• 12:48
  SPEAKER_00: My God, it was all in my lower back up to my shoulders, and it was brutal.
• 12:53
  SPEAKER_00: Um, because we're on the topic of wind.
• 12:55
  SPEAKER_00: Yeah.
• 12:55
  SPEAKER_00: And is that something you see commonly after stoma surgery?
• 12:58
  SPEAKER_00: Because your bowels are being handled and Absolutely.
• 13:01
  SPEAKER_01: There is that adjustment phase after surgery, and it takes a good few weeks, and everybody's different.
• 13:08
  SPEAKER_01: But we normally say it takes about six weeks for all that to settle down even a little bit longer.
• 13:13
  SPEAKER_01: Um, so that's all very normal part of our of um getting a stoma in the first place.
• 13:19
  SPEAKER_01: Just your bowels are as you've just said it there, they're after being handled, they're after being moved around, so they need to just settle down.
• 13:26
  SPEAKER_01: Yeah.
• 13:27
  SPEAKER_00: I think peppermint tea was recommended by my stominers.
• 13:30
  SPEAKER_01: Peppermint tea, or if you don't like peppermint tea, peppermint capsules can be good as well.
• 13:35
  SPEAKER_01: Yeah.
• 13:35
  SPEAKER_01: Yeah.
• 13:36
  SPEAKER_01: Yeah.
• 13:36
  SPEAKER_01: So that's and that's for anyone who experiences wind.
• 13:39
  SPEAKER_01: Um you know, that's recommended for bloating and and winds, so that's can be helpful for anyone.
• 13:45
  SPEAKER_03: There's one thing that um I've started to notice actually more um after surgery was when I first got my stoma bag, trial and error to your point.
• 13:53
  SPEAKER_03: Yeah like finding the right bag that works for me.
• 13:55
  SPEAKER_03: Fortunately, obviously motive and the pelican bags and ekin bags at the time have massively helped.
• 13:59
  SPEAKER_03: But like lots of um people who speak to me worry about like sore skin.
• 14:04
  SPEAKER_03: Yeah.
• 14:04
  SPEAKER_03: And there's lots of people that get um like bleeding around their stoma, or like um it almost comes like little holes like some people see and things.
• 14:11
  SPEAKER_03: So have you got any practical tips or recommendations to help those patients?
• 14:16
  SPEAKER_01: Absolutely.
• 14:16
  SPEAKER_01: Going back to your point in those early few weeks after you have a stoma, um, there's gonna be a lot of odema and a lot of swelling around your stoma for the first while.
• 14:24
  SPEAKER_01: So it is just keeping an eye as that swelling is going down.
• 14:27
  SPEAKER_01: Um so it will drastically reduce in the first six weeks.
• 14:30
  SPEAKER_00: Oh, because you're constantly like uh like you know you wouldn't recommend having pre-cut bags, would you, for the first time?
• 14:37
  SPEAKER_01: Not in the first no, because it's going to change it's gonna change, yeah.
• 14:41
  SPEAKER_01: And through the lifetime of having a stoma, it's gonna change as well at different stages, but most dramatically.
• 14:47
  SPEAKER_01: So it is just keeping an eye to making sure that your template is cut because any exposed skin, the enzymes from the stool or the orine is going to irritate the skin and break those barriers down.
• 14:58
  SPEAKER_03: So is that okay, that makes more sense.
• 15:00
  SPEAKER_01: Yeah, yeah.
• 15:01
  SPEAKER_03: Uh I just thought it was irrit uh again, I just thought it's because you're if content gets onto onto your skin.
• 15:05
  SPEAKER_01: Yeah, but that's the enzymes in this that'll break down and change the pH of the skin.
• 15:09
  SPEAKER_01: See, this is why it's good to have a nerve nail.
• 15:11
  SPEAKER_01: And it's actually scientific information.
• 15:15
  SPEAKER_01: But that's just one of many.
• 15:16
  SPEAKER_01: I mean, you can get allergies as well, and you might have a bag for years and then all of a sudden you start developing an allergy around it.
• 15:23
  SPEAKER_01: And it's really strange.
• 15:25
  SPEAKER_01: And I don't know the answer why all of a sudden you'll develop an allergy.
• 15:29
  SPEAKER_01: But again, if it's an allergy, you'll often find it's in the shape of the stoma bag.
• 15:35
  SPEAKER_01: So that's a good indication of what it is.
• 15:37
  SPEAKER_01: Um, other reasons for sore skin is if you have a leak, and that's not just if the template isn't cut right, but if you um have put on weight or lost weight.
• 15:47
  SPEAKER_01: Pregnancy.
• 15:47
  SPEAKER_01: Pregnancy, absolutely.
• 15:49
  SPEAKER_01: Even just if you start to become more active, your needs are going to change.
• 15:53
  SPEAKER_01: So it's really important that if you are having leaks to link in with your stomach care nurse to get that reviewed.
• 15:59
  SPEAKER_01: Because what a lot of a lot of people will say to me, Oh, I only have a leak once a week or that, but that's still too much if you and no one has to live like that, do they?
• 16:08
  SPEAKER_00: And unfortunately, there are people out there that maybe whether it's confidence or convenience or whatever, they don't want to or feel ready to approach a stoma nurse because they can deal with it, but that doesn't mean they should.
• 16:21
  SPEAKER_01: Absolutely, yeah.
• 16:22
  SPEAKER_01: And the thing about the skin, it'll break down so quickly.
• 16:25
  SPEAKER_01: But once you get the right products on it, once you manage it correctly, it'll heal really, really quickly.
• 16:31
  SPEAKER_00: I do find that it can turn around as quick as it can come on.
• 16:34
  SPEAKER_00: I know when you're in that moment of sore skin, it can feel like all-consuming because you can feel it, you're aware of it, and it you can know as soon as you've got sore skin, the leaks are gonna come thick and fast because your bag's not gonna adhere to your skin.
• 16:48
  SPEAKER_00: And it's just so please contact your stomach.
• 16:51
  SPEAKER_01: It's that cycle of you have a leak, skin gets sore, there has to be something changed on it, but you don't know what it is.
• 16:58
  SPEAKER_01: You put the bag back on, but then you've got sore skin on top of that, and that's gonna continue that cycle until you break it.
• 17:04
  SPEAKER_01: Yeah.
• 17:05
  SPEAKER_03: That's so true.
• 17:06
  SPEAKER_03: Because I I remember when I started getting more active, I got more bag leaks.
• 17:10
  SPEAKER_03: But I spoke to my stoma nurse and they went, Well, why don't you try a two-piece?
• 17:14
  SPEAKER_03: Because it's a bigger base plate.
• 17:15
  SPEAKER_00: Yeah.
• 17:16
  SPEAKER_03: And it was ever so slightly stickier.
• 17:17
  SPEAKER_03: And then I got a a two-piece, and I was like, this is game changing.
• 17:20
  SPEAKER_03: Yeah.
• 17:21
  SPEAKER_03: But it was only because I had that conversation.
• 17:22
  SPEAKER_03: Absolutely otherwise I would have been like, no, bags don't work, I need to get a new bag, and that was never the case.
• 17:27
  SPEAKER_03: Like, do you know what I mean?
• 17:28
  SPEAKER_00: I think I think as well, it's uh it can be very overwhelming to see all the accessory products.
• 17:34
  SPEAKER_00: And if you've got a problem like sore skin, it's easy to go, I need a seal, I need a paste, I need a this, I need a that.
• 17:41
  SPEAKER_00: But y it might not be as complex as that.
• 17:44
  SPEAKER_00: It might just be a simple fix that again your stomachs can help you with.
• 17:49
  SPEAKER_01: I've seen it so often where it's just a resize of the template, um just a change like that, what you said, just a change on the channel.
• 17:57
  SPEAKER_01: And introducing something else to your routine.
• 18:00
  SPEAKER_01: My motto has always been less is more, and the more the less that we need to introduce, the better it's gonna be.
• 18:06
  SPEAKER_01: But having said that, there's always needs, there's so many different accessories out there, um, there's always a reason for them.
• 18:12
  SPEAKER_01: Yeah.
• 18:13
  SPEAKER_01: So it's just making sure that you're matching and you're you're when you're user introducing a supporting product or an accessory, that there's a reason for it as well, and that it's it's supporting ye who has your stoma.
• 18:24
  SPEAKER_01: I mean you want it to to fall into your normal day life as much as possible.
• 18:28
  SPEAKER_00: Yeah, yeah.
• 18:29
  SPEAKER_00: 100%.
• 18:30
  SPEAKER_00: Definitely.
• 18:30
  SPEAKER_00: Now, hernia's is something that is a huge topic, and I see it a lot on the support groups on Facebook where people again they don't want to reach out to anyone because they don't think it's a big deal, but they're clearly worried because they're voicing it online.
• 18:46
  SPEAKER_00: So when you're presented with a patient and they're saying, Look, I've got this bulge, I've got this, that, whatever, where do they go from there?
• 18:55
  SPEAKER_01: Um and not to play it down by saying it's not a big deal, it's important that it is looked at and that we review it, but there's no need to panic with it.
• 19:03
  SPEAKER_01: So it's getting that balance of it is important that you have it looked at.
• 19:07
  SPEAKER_01: Um I suppose the main concerns as a stomach care nurse that I would have if somebody has uh hernia is that the blood supply is still getting to the stoma, so it should be that good pinky-red y colour.
• 19:18
  SPEAKER_00: And it's the entire mouth is a good reference to that.
• 19:22
  SPEAKER_00: For the texture and the wetness and the colour.
• 19:24
  SPEAKER_01: Yeah, yeah, absolutely.
• 19:26
  SPEAKER_01: So that that's would be my main concern when somebody has a hernia.
• 19:30
  SPEAKER_01: Unfortunately, they are very common and it's the nature of the surgery.
• 19:35
  SPEAKER_01: Yeah.
• 19:36
  SPEAKER_01: So it's it always reminds me of if you have a top and there's a little hole in it, um, all the fabric around that hole is going to be a lot weaker.
• 19:44
  SPEAKER_01: So if anything is behind it pushing into it, it's going to cause more damage.
• 19:49
  SPEAKER_01: And it's very similar.
• 19:50
  SPEAKER_01: The surgeon and I've had to cut through our abdominal wall and put a little hole in it, so all that muscle around it is going to be a little bit weaker.
• 19:58
  SPEAKER_01: And our abdominal walls are fantastic, it holds so much, so many organs in there, but there's a lot of pressure.
• 20:04
  SPEAKER_01: So if there's any weakness in there, it can easily just push through.
• 20:08
  SPEAKER_01: It's going to look for for that weakness.
• 20:10
  SPEAKER_01: Um, and I'm always really conscious, but not if somebody gets a hernia, that not to say, oh, it's because of this or because of that.
• 20:19
  SPEAKER_01: You can do, I can give you all the advice in the world and you can follow it and you might still develop a hernia.
• 20:24
  SPEAKER_01: Um, but there is ways to reduce it.
• 20:26
  SPEAKER_01: And with a hernia, prevention is always better than cure.
• 20:29
  SPEAKER_03: So that's one thing I want to touch on because when I first got my um stoma, like I was always going to the gym, all those sorts of things, and I was so paranoid post-surgery, I'm not gonna be able to work out.
• 20:39
  SPEAKER_03: I was working out like, you know, six, seven times a week, if not more.
• 20:43
  SPEAKER_03: Like heavy weightlifting, all those sorts of things.
• 20:45
  SPEAKER_03: Then I got my stoma, spoke to my stoma nurse, and they were like, yeah, fine.
• 20:49
  SPEAKER_03: There's lots of different like advice, not wait until 12 weeks before you lift, don't lift more than a kettle, I've heard like a hundred times, and all these things.
• 20:56
  SPEAKER_03: Like, what's the best way for prevention?
• 20:58
  SPEAKER_03: Like tips, garments, what do you recommend?
• 21:02
  SPEAKER_01: And and that is such so aptly timed at the moment because just at ASCN, which is the stomachare the Association for Stomachare Nurses, um, back in October, there was a new um guidelines launched around exercises post-surgery.
• 21:18
  SPEAKER_01: So there that's really helped us to be able to confidently advise patients on exercise.
• 21:25
  SPEAKER_01: And what the guidelines would say is that we should be starting very straight away after surgery with even just abdominal exercises.
• 21:33
  SPEAKER_01: Um starting off with just some breathing exercises and then moving up and moving up.
• 21:38
  SPEAKER_01: And it's like it's like everything, it's not a one size fits all.
• 21:41
  SPEAKER_01: So it's important that it's adapted.
• 21:43
  SPEAKER_01: But it that myth around oh, nothing heavier than a kettle.
• 21:47
  SPEAKER_01: When I first started stomach care, I probably would have said that.
• 21:50
  SPEAKER_01: Um but it's not that's not true.
• 21:52
  SPEAKER_01: It's one it has to be tailored towards every individual.
• 21:56
  SPEAKER_01: And the fact that you were doing it beforehand probably meant.
• 22:00
  SPEAKER_01: Yeah, and but I'm not a physio and I'm always really conscious of that.
• 22:04
  SPEAKER_01: But um I think it's really helpful now that we have those guidelines which will streamline making sure that we're all giving the same advice.
• 22:11
  SPEAKER_01: Yeah.
• 22:12
  SPEAKER_03: That's amazing.
• 22:12
  SPEAKER_03: I mean I'm gonna segue a little bit.
• 22:14
  SPEAKER_03: When I had um uh my surgery, I had got um post-surgery ilias, where it is when your stoma falls asleep.
• 22:20
  SPEAKER_03: And the stoma nest can work out why I was doing it.
• 22:22
  SPEAKER_03: So she was like, Do you mind if I stick my finger into your stoma?
• 22:24
  SPEAKER_03: And I was like, sure.
• 22:26
  SPEAKER_03: But she went, gosh, you've got a really strong abdominal wall.
• 22:29
  SPEAKER_03: Like she was like, Wow, that's really strong.
• 22:30
  SPEAKER_03: And then she was like, Hey doctor, come and have a look at this.
• 22:32
  SPEAKER_03: Just put your finger in there.
• 22:33
  SPEAKER_03: And I was like, guys, guys, like, I'm still here.
• 22:36
  SPEAKER_03: I'm still here.
• 22:36
  SPEAKER_03: Like, but yeah, no, but it's it's it's so true.
• 22:39
  SPEAKER_03: She was like, You'll have no issues.
• 22:40
  SPEAKER_03: And I was like, Well, you know, I what if I'm worried about it?
• 22:43
  SPEAKER_03: She's like, No, no, you'll be fine.
• 22:44
  SPEAKER_03: You're you've got a strong abdominal wall already.
• 22:46
  SPEAKER_03: So you should you can get out and start running.
• 22:48
  SPEAKER_03: And then she was like, get off your chair, then.
• 22:50
  SPEAKER_03: I was like, it's day three.
• 22:51
  SPEAKER_03: She was like, get out, move, get moving.
• 22:53
  SPEAKER_03: And I was like, No, I don't want to do it.
• 22:55
  SPEAKER_00: Yeah, yeah.
• 22:56
  SPEAKER_00: It's quite scary when you first move your body, isn't it?
• 22:59
  SPEAKER_03: It's it's the it's Well, the the drugs wear off after surgery.
• 23:02
  SPEAKER_03: So you feel great straight after.
• 23:04
  SPEAKER_03: Yeah.
• 23:04
  SPEAKER_03: And then you're like, yeah, and then you get all the pains in your shoulders and your like all those bits, and the anesthesia wears off, and then you're groggy, and then you're walking around, you're like, Oh gosh.
• 23:13
  SPEAKER_03: I was running marathons or like training for it, and then I'm just gonna do four steps.
• 23:17
  SPEAKER_03: Yeah.
• 23:17
  SPEAKER_03: And then stops.
• 23:19
  SPEAKER_01: It's a big thing.
• 23:20
  SPEAKER_01: Yeah.
• 23:21
  SPEAKER_01: You have to start somewhere and just taking your time with it and starting as early as possible, and it's just movement, just getting out and moving.
• 23:28
  SPEAKER_00: One step at a time.
• 23:29
  SPEAKER_01: One step at a time, absolutely.
• 23:31
  SPEAKER_00: Now, the next topic we've got is blockages.
• 23:35
  SPEAKER_00: Oh yes.
• 23:37
  SPEAKER_00: I mean, I think is it fair to say that if you've had a stoma for a while, you've probably picked up what works for you in terms of blockages, so you may not get a lot of people coming to you for that.
• 23:48
  SPEAKER_00: But if you've uh fresh out of surgery and you do experience that, I'd imagine it's such a very panicky, vulnerable place to be.
• 23:57
  SPEAKER_01: And I suppose you can uh confirm it, but uh it's it's so painful when you have a blockage.
• 24:05
  SPEAKER_01: Yeah, and it's frightening as well.
• 24:07
  SPEAKER_01: Um so what I would say is try and relax as much as possible.
• 24:11
  SPEAKER_01: Our body and mind is all connected and like that, you're s you're scared.
• 24:16
  SPEAKER_01: You don't know what why this is happening.
• 24:18
  SPEAKER_01: And it's the tense and the anxiety a little bit.
• 24:22
  SPEAKER_03: And like you can just feel the pressure building, and you're like, come on, fart, do something, come on, and then I'll move a little bit.
• 24:28
  SPEAKER_03: And then sometimes like that release when it starts, and I'm like, oh thank God, thank God it's just like get ripped.
• 24:34
  SPEAKER_00: Because you see people online, we talk about a lot about online, because a lot of people share their stoma journeys now and share their experiences.
• 24:41
  SPEAKER_00: And the pain and the upset that it causes people is it's heartbreaking, it's it's horrible.
• 24:47
  SPEAKER_00: Um But yeah, what are your go-tos then when you have a patient with one?
• 24:51
  SPEAKER_01: The first thing I would say is try and relax.
• 24:53
  SPEAKER_01: I know it's so much easier said than done, but our body and mind is all connected.
• 24:57
  SPEAKER_01: So when we're anxious, our body tenses up.
• 25:00
  SPEAKER_01: So it is just trying to some breathing exercises or some grounding exercises just to try and relax the body a little bit.
• 25:06
  SPEAKER_01: You can also massage around the area as well, so just lightly massaging around the area.
• 25:11
  SPEAKER_01: Um and don't while you're having the blockage as well, try not to eat until it passes.
• 25:19
  SPEAKER_01: Um but do sip some water and keep your fluids up as well.
• 25:23
  SPEAKER_01: If it's not passing, I would go and seek medical attention.
• 25:26
  SPEAKER_03: Yeah, I've had it, I've had fuse where I've been.
• 25:28
  SPEAKER_01: You've been in AE with it, haven't you?
• 25:30
  SPEAKER_03: Yeah, like and I've been massaging, I like lie on my side because I sometimes find that helps for me a little bit.
• 25:35
  SPEAKER_03: Like and then yeah, it's not moved, and then I've had to have like um uh like catheters put in it, like drain it and all that sort of stuff, and it's just it's just waiting for that release.
• 25:45
  SPEAKER_03: And then I've also had because it because I'm not eating or whatever, then get worried like well, your kidney function's going down because you're not topping up fluids and all those sorts of things.
• 25:53
  SPEAKER_03: So like blockages are natural, they they may happen, so do exactly what Lucy's saying.
• 25:58
  SPEAKER_03: Like when you're like it's not moving, get to you know, doctors and and so and AE and stuff like that.
• 26:05
  SPEAKER_00: A lot of people say and they drink coke.
• 26:07
  SPEAKER_00: Yeah.
• 26:07
  SPEAKER_00: Or a fizzy drink.
• 26:08
  SPEAKER_03: Yeah, it's it removes grime off steel, so therefore it'll therefore get stone on the water.
• 26:15
  SPEAKER_01: I suppose it's the carbonated water which can cause it can cause a a lot of wind, and going back to the ballooning that it can also contribute to that.
• 26:25
  SPEAKER_01: But it might just put some pressure behind it just to move it along.
• 26:28
  SPEAKER_01: Um so yeah, I've heard of people doing that as well.
• 26:30
  SPEAKER_00: It's a bit like a burst pipe, isn't it?
• 26:32
  SPEAKER_00: Just like you just need to release that pressure and yeah, yeah.
• 26:36
  SPEAKER_00: I mean the feeling when you do whatever.
• 26:38
  SPEAKER_03: It's so good.
• 26:39
  SPEAKER_03: Oh my god.
• 26:40
  SPEAKER_03: Oh, honestly, when it just when it just explodes like but like because you've it's been so trapped, it's that it's that release of air, and you know, right, thank God, like I'm everything's okay.
• 26:51
  SPEAKER_03: It makes me feel sick.
• 26:52
  SPEAKER_03: Uh well.
• 26:52
  SPEAKER_00: Because my stomach's turning and like I don't know, make different for different people, isn't it?
• 26:57
  SPEAKER_00: Absolutely, yeah.
• 26:58
  SPEAKER_03: Well, it's true, that's 100%.
• 26:59
  SPEAKER_03: That's 100% true.
• 27:00
  SPEAKER_03: But then I don't I know I I know don't have a rectum well sorry, start again.
• 27:04
  SPEAKER_03: I don't have a full connecting pipes anymore, so I can't let a fart rip.
• 27:09
  SPEAKER_03: So that's my like do you know what I mean?
• 27:10
  SPEAKER_03: That's true.
• 27:11
  SPEAKER_00: Isn't it amazing how much you miss that?
• 27:13
  SPEAKER_03: So this is what I'm gonna go back to with this, because the next thing that I I I I get this, and I don't know if you do, is I get rectal discharge.
• 27:21
  SPEAKER_03: Like I get mucus that comes out of my bum.
• 27:23
  SPEAKER_03: So I will say to my wife, I've got to go for a sit-down toilet now, and she's like, what on earth you want about?
• 27:29
  SPEAKER_03: And I was like, I need to now just sit on a toilet and just let like the mucus fall out.
• 27:34
  SPEAKER_03: And it's the only real sensation I kind of have to go into the toilet like a normal person.
• 27:39
  SPEAKER_03: But for people who don't know what this is, because I don't think this is talked to panel.
• 27:42
  SPEAKER_00: No, could you describe what rectal this trap is?
• 27:45
  SPEAKER_01: Absolutely.
• 27:45
  SPEAKER_01: Well, the job of the large bowels is to produce mucus to help move move the stool along.
• 27:50
  SPEAKER_01: And then when you have a stoma, the bowel doesn't realise that that part of the bowel doesn't need to produce mucus anymore, and it continues to produce it.
• 27:58
  SPEAKER_01: So we would normally just in the past you would just pass it when you're doing a a stool, you just pass it in the toilet.
• 28:06
  SPEAKER_01: And you wouldn't even notice it.
• 28:07
  SPEAKER_01: But now it can it can build up and it it is a little bit scary for the first few months.
• 28:13
  SPEAKER_01: And the and also sometimes what people can find very panicky is you might even pass a little bit of stool um in those first few months if there was any old.
• 28:23
  SPEAKER_01: Five years later with mucus.
• 28:24
  SPEAKER_01: It's yeah.
• 28:25
  SPEAKER_00: I mean, I haven't had Barbie butt surgery, so yes.
• 28:28
  SPEAKER_00: And I've got a loop hileostomy.
• 28:29
  SPEAKER_02: Yeah.
• 28:30
  SPEAKER_00: So for those of you that don't know, you've got two, you've got an outlet where your poo comes out, but then you've also got another outlet where which goes back down and is still connected to your rectum.
• 28:38
  SPEAKER_00: So yeah, it's it's very possible that you can have it hopping from one to the other and you can still let out some stool, which is also something I didn't realise would be a thing.
• 28:48
  SPEAKER_00: Yeah.
• 28:48
  SPEAKER_03: Is there anything like for people that are worried about this, are there anything like not getting too much into the mucus side of things, but if there's things people should watch out for if they're worried, like when to come and speak to a stoma nurse?
• 28:59
  SPEAKER_01: Absolutely.
• 28:59
  SPEAKER_01: So it should be clear or yellowish in colour.
• 29:01
  SPEAKER_03: Okay, good.
• 29:01
  SPEAKER_01: If there's any blood staining in it or if there's any strong odour that uh from it, then I would always get that checked out because it can be a sign of infection.
• 29:09
  SPEAKER_01: Um but it just to be mindful, sometimes it's f food can cause it to um really to pass more mucus as well.
• 29:17
  SPEAKER_01: And I suppose maybe with spicy food, all of that you are activating the bowels a little bit more, so it is naturally going to produce more mucus against it.
• 29:25
  SPEAKER_01: That's a fair point, right?
• 29:26
  SPEAKER_03: Most we'll have a curry than more the day after.
• 29:28
  SPEAKER_03: We don't have to, but I guess that's that's probably gonna help.
• 29:31
  SPEAKER_00: With mucus, there are lots of things that can encourage it as can cause it more.
• 29:36
  SPEAKER_00: So I know when I was pregnant I experienced a lot more.
• 29:40
  SPEAKER_00: When I was more active I would experience it more.
• 29:44
  SPEAKER_00: But would it be safe to say that people should I suppose it shouldn't stop you doing these things, should it?
• 29:50
  SPEAKER_01: No, it shouldn't, but I think it's important to acknowledge that for some people it is a big issue.
• 29:56
  SPEAKER_01: And it's it's strange and I don't know the answer to it, but some people will experience a huge amount of rectal discharge and other people will experience very little.
• 30:04
  SPEAKER_01: So it's very much individualised, and I think it I'm always conscious that it's easy for me to sit here and say, don't worry about it and continue on with your day.
• 30:12
  SPEAKER_01: For some people it might be a big problem.
• 30:14
  SPEAKER_00: If you've had it checked, and I think I know for me and you it is just part of it, isn't it?
• 30:19
  SPEAKER_00: Unfortunately.
• 30:20
  SPEAKER_00: Um and I as a woman I know I can wear sanitary towels, and there are things you can you know, the they've got the pants now that you can wear on your period that can absorb and you can wear them.
• 30:30
  SPEAKER_00: As a man there's not a lot.
• 30:32
  SPEAKER_03: There's not, is there?
• 30:34
  SPEAKER_03: Mine doesn't like I know some people who speak to me like they have like constant discharge.
• 30:39
  SPEAKER_03: And I'm not in that bracket.
• 30:41
  SPEAKER_03: Yeah.
• 30:41
  SPEAKER_03: Mine has increased, like I know it has.
• 30:43
  SPEAKER_03: Like it would be once every few months, now it's every couple of days.
• 30:46
  SPEAKER_03: And even today I'm like, oh, I know like I'm getting this.
• 30:49
  SPEAKER_03: But also like phantom butt pain.
• 30:51
  SPEAKER_03: It's that.
• 30:51
  SPEAKER_03: Do you know what I mean?
• 30:52
  SPEAKER_03: It's those sorts of things.
• 30:53
  SPEAKER_03: But but yeah, it's just I don't know, I guess it's like just sort of listening to your body, looking at the signs of you set, and then if there's things that are changing, then go to speak to your stomachs.
• 31:02
  SPEAKER_01: Absolutely, like do speak to your stomach care nurse.
• 31:05
  SPEAKER_01: There's stuff that you can do proactively, like sit in the toilet.
• 31:08
  SPEAKER_01: Yes, um, I think it's the first thing.
• 31:10
  SPEAKER_01: Yeah, elevate your your feet, um, and then that helps naturally open the anus there.
• 31:16
  SPEAKER_01: And then it can be helpful just to wear a little pad or something to absorb it uh when you're out and about.
• 31:22
  SPEAKER_01: But I would say if there if it is a big problem, talk to your stomach care nurse or your colorectal surgeon if you're still in touch with them.
• 31:29
  SPEAKER_01: Um because there is other stuff that would need intervention and recommendations from somebody who's tailoring it towards each individual.
• 31:37
  SPEAKER_01: So if it is a big problem, do speak about it.
• 31:41
  SPEAKER_00: I think unfortunately it's like with all these things, there's not one there's not a fix for everything, is there?
• 31:46
  SPEAKER_00: And when you have stoma surgery, you c uh not everything can be fixed.
• 31:50
  SPEAKER_00: There are gonna be things that you do have to live with, and that's just the way it is, which I know sounds a bit brutal, but uh it's it's just being honest, really, isn't it?
• 32:00
  SPEAKER_01: It's and look, I'm always really conscious as well that there is stomas out there that might have been done in an emergency, they're not as um easy to manage as you would like, and that can be really, really challenging as well.
• 32:14
  SPEAKER_01: So even though we have all of these amazing products, sometimes it is just more challenging for people.
• 32:20
  SPEAKER_01: Yeah.
• 32:21
  SPEAKER_03: And I feel like we've I'm quite I'd like to say quite fortunate with mine.
• 32:24
  SPEAKER_03: I feel like you might be quite fortunate with yours.
• 32:26
  SPEAKER_03: Uh my care's been quite good, but but yeah, like for people out there who who do struggle, like go speak to your stoma nurses.
• 32:33
  SPEAKER_03: I've got something I do want to talk about.
• 32:35
  SPEAKER_03: Because again, this doesn't affect me.
• 32:36
  SPEAKER_03: I don't know if it affects you.
• 32:38
  SPEAKER_03: Pancaking.
• 32:39
  SPEAKER_03: Other than eating these delicious sweet treats on, you know, Shrove Tuesday or whatever it is in the middle of February.
• 32:44
  SPEAKER_03: What is it?
• 32:45
  SPEAKER_03: And that like why is it a big thing?
• 32:47
  SPEAKER_03: And if people are listening and they're worrying about it, what can they do to to help reduce this?
• 32:52
  SPEAKER_01: So with pancaking, it's the very opposite to ballooning.
• 32:55
  SPEAKER_01: So with ballooning, you've too much wind in the bag.
• 32:58
  SPEAKER_01: With pancaking, there's absolutely no wind in the bag.
• 33:01
  SPEAKER_01: It's more common with colostomies, but it can still happen with other types of stomas as well.
• 33:06
  SPEAKER_01: But what happens is when the stool leaves the stoma, it gets stuck at the top at the opening, and there's no room for it to fall down.
• 33:14
  SPEAKER_01: So it can then squeeze out.
• 33:15
  SPEAKER_01: It's going to look for wherever it can go and it can squeeze out under the bag then.
• 33:20
  SPEAKER_01: Um so it can be a big issue.
• 33:22
  SPEAKER_01: There's lots of little things that you can do to improve that.
• 33:26
  SPEAKER_01: Um, so you can cover up the filters on it.
• 33:28
  SPEAKER_01: So if the filter on the bag is too effective, most bags will come with little filter covers.
• 33:33
  SPEAKER_00: Yeah, yeah, they're the sheet in the box.
• 33:37
  SPEAKER_00: So my kid my kids would use it as stickers.
• 33:39
  SPEAKER_00: Like, oh, free stickers.
• 33:40
  SPEAKER_03: Well, no, they're a function.
• 33:41
  SPEAKER_03: I won't lie to you, like my stomachs, they may have said this.
• 33:44
  SPEAKER_03: I had no idea when I first got my bags, I was like, Why have I got these rubbish stickers?
• 33:47
  SPEAKER_03: And just I keep I threw them in the bin.
• 33:49
  SPEAKER_03: I was like, I don't know what they are.
• 33:51
  SPEAKER_03: Well I was like, why do I need them?
• 33:53
  SPEAKER_03: I thought they were additional, like in case the um like the the clip bits or whatever, if they don't work, you just put that on in case one of one of them fails.
• 34:02
  SPEAKER_03: Well that's what made sense to me.
• 34:03
  SPEAKER_03: Like a bag's got to sit and it's not doing it.
• 34:05
  SPEAKER_03: So that you use the sorry, use the stickers to cover the filter.
• 34:08
  SPEAKER_01: Filters to cover use the stickers to cover the filters.
• 34:11
  SPEAKER_01: Yeah, absolutely.
• 34:12
  SPEAKER_01: Now, be mindful if you are doing that just to keep an eye on it, because the there's no wind going to escape then.
• 34:18
  SPEAKER_01: So just keep an eye that it doesn't go then the balloon can happen.
• 34:22
  SPEAKER_01: So just to make sure to take it off again.
• 34:23
  SPEAKER_01: But you can also just make sure there you put air, so lift out the back of the bag and make sure there's air in it.
• 34:29
  SPEAKER_00: Again, then if you've got a closed bag.
• 34:32
  SPEAKER_00: Oh.
• 34:33
  SPEAKER_00: Isn't there this gel or stuff that you can put in before you attach your bag to help it slip and slide?
• 34:39
  SPEAKER_01: Yeah.
• 34:40
  SPEAKER_00: Away from the stomach.
• 34:41
  SPEAKER_01: No, you can use a lubricating gel in it.
• 34:45
  SPEAKER_01: Some people will I've heard of patients using olive oil or something like that.
• 34:49
  SPEAKER_02: Olive oil.
• 34:51
  SPEAKER_00: Yeah, olive or vegetable.
• 34:53
  SPEAKER_00: Any preference?
• 34:54
  SPEAKER_01: No, and I can't.
• 34:58
  SPEAKER_01: I'm telling that from an antidotal point of view because we don't have truffle oil to patients, I'm sure.
• 35:05
  SPEAKER_00: No, no, absolutely.
• 35:06
  SPEAKER_01: What I am recommending is, and I always will, to go for a lubrication gel.
• 35:11
  SPEAKER_01: Um just I suppose that's what is is it's designed for as well.
• 35:16
  SPEAKER_01: So to put that into into the back.
• 35:18
  SPEAKER_03: I think there's a niche we could try and get olive oil on the NHS inscriptions.
• 35:22
  SPEAKER_03: I need it for my bag.
• 35:24
  SPEAKER_00: Oh, I just eat food up, so I'd have no use for that.
• 35:27
  SPEAKER_00: But um, yeah, I mean we have covered a lot of the main things that people talk about.
• 35:33
  SPEAKER_00: Um but I want to move on to sexual health.
• 35:35
  SPEAKER_00: Yeah.
• 35:35
  SPEAKER_00: So this is something that at the ASCN, I was there with um I was there with my children's hospital and I experienced it as a patient and as someone that had a stand and it was incredible.
• 35:47
  SPEAKER_00: And I'm sure you nurses really gain so much from it when you go.
• 35:51
  SPEAKER_00: But sexual health was in a lot of the symposiums and it was the real buzzword for the event.
• 35:56
  SPEAKER_00: So in terms of patients with stomas and sexual health, what is it that's uh topical at the moment?
• 36:02
  SPEAKER_00: What is it that as stoma nurses you're uh being asked to consider now more than ever?
• 36:08
  SPEAKER_01: I think it's just opening the conversation, it's just having that conversation and without making assumptions, without making any predictions, it's just uh allowing your patients to know there's a safe space for them to talk about their if their concerns, if there is any.
• 36:24
  SPEAKER_01: But what research would say is that there is a it is a big element and especially if changes with body image and all of that as well.
• 36:34
  SPEAKER_01: Um so to communicate will be my most important thing and to talk about it.
• 36:38
  SPEAKER_01: Um but with your stomach care nurse, but if you have a partner, just to communicate with your partner as much as possible.
• 36:43
  SPEAKER_01: Um and for any future partners as well, just to feel confident that it's absolutely okay to talk about it.
• 36:51
  SPEAKER_01: And there is so many um there is so many supporting uh products there now to help enable and to empower people with stomas and it's to utilize those as much as possible and just to remember absolutely everybody uh it's a the World Health Organization will say it's a basic human right.
• 37:12
  SPEAKER_01: And it's really important that we talk about it and open up these conversations.
• 37:16
  SPEAKER_01: Um and for me, what I've found has been most of important to me in my role as a nurse is becoming confident about it, speaking about it in myself.
• 37:25
  SPEAKER_01: When I first started stomach care, if I mentioned sex, I would have gone tomato head, I would have gone so red, and it's now it's just the more I grow my confidence with it, the more I'm absolutely confident to talk to people about it.
• 37:38
  SPEAKER_01: I know it's it's absolutely fine to talk about it.
• 37:40
  SPEAKER_01: 100% and to open up to your stomach care nurse.
• 37:44
  SPEAKER_01: Um a lot of people will s will feel that stomach care nurses who they are feel more comfortable to talk to about it.
• 37:51
  SPEAKER_01: Um so just make sure to there is um there was a survey done recently that showed that not all stomach care nurses are talking about it and confident in talking about it.
• 38:02
  SPEAKER_01: So it is important that I think from where I feel from my role as a nurse is to make sure that I am opening up these conversations and that we're very much mindful that it is an important topic to have, both pre-operatively and post-operatively as well.
• 38:19
  SPEAKER_01: Um and I suppose because of the nature of the surgery, there often is going to be changes around the pelvic area.
• 38:26
  SPEAKER_02: Yeah.
• 38:26
  SPEAKER_01: So it's just important to to be aware of that as well, even if possible before surv it should really be discussed post-surgery if there's sorry, pre-surgery, if there is going to be changes there.
• 38:38
  SPEAKER_01: Um and it's just having those conversations and find there's so many solutions.
• 38:43
  SPEAKER_01: Actually, it was only yesterday I was at a a psychosexual talk and we were talking about um empowering patients, opening up the conversations and solutions that are available out there.
• 38:53
  SPEAKER_01: That's really hard.
• 38:54
  SPEAKER_00: What are the main things that people might come across to do with their sex life when they've had the stoma?
• 39:00
  SPEAKER_00: Obviously, there's the mental aspect of it, um, the confidence and the change in your body image.
• 39:05
  SPEAKER_00: But physically, what things can happen post-surgery that affects that?
• 39:11
  SPEAKER_01: That depends completely on the type of surgery.
• 39:13
  SPEAKER_01: So it's very much dependent on the type of surgery that you've had.
• 39:17
  SPEAKER_01: Um so I think it there's so many different ways different elements to it.
• 39:24
  SPEAKER_01: Um but I think that's where it's important that it's very much tailored to everybody as well.
• 39:29
  SPEAKER_01: Um what I would say is just being confident and opening up that conversation and discovering how it impacts on you individually and the impact that it can have on you.
• 39:40
  SPEAKER_01: Um often what we find is that we we mind-read what somebody else is thinking, or we think, well, the nurse didn't bring it up, so I don't feel comfortable to bring it up.
• 39:49
  SPEAKER_01: Yeah, my partner could have a problem with it and they have a problem with it, but actually we're not communicating and we're not saying, How do you feel about it?
• 39:57
  SPEAKER_01: And the research would say that most of the time partners don't have a problem with it.
• 40:02
  SPEAKER_01: It's just um but we can build these things up in our head if we're not told.
• 40:07
  SPEAKER_03: It's a real key point, because I remember like uh what during my surgeries, because I similarly had it refashioned as well, um my stoma nurse didn't really talk about it.
• 40:16
  SPEAKER_03: They were like, don't put anything in it was what I was told a lot of.
• 40:21
  SPEAKER_03: And I was like, but that was it.
• 40:22
  SPEAKER_00: But I thought that would be obvious.
• 40:24
  SPEAKER_00: Is it not obvious?
• 40:25
  SPEAKER_03: Well, again, I uh I laughed and I went, What do you mean?
• 40:28
  SPEAKER_03: She's like, well, we do get some people that will do XYZ because you're a male and like and I was like, right, okay.
• 40:34
  SPEAKER_03: That I guess that makes sense.
• 40:35
  SPEAKER_03: Thank you for at least broaching the the topic with me.
• 40:38
  SPEAKER_03: But the thing that I they talked more about for me was um what if I can get my rectum removed, nerve damage ending that could impact like essentially getting it up, things like that, which is a big worry for a lot of men.
• 40:50
  SPEAKER_00: Yeah.
• 40:51
  SPEAKER_03: So so maybe yeah, there's this thing.
• 40:52
  SPEAKER_00: Well you did a men's you've done a series of men's specials, so if you haven't listened to that already and you go back, you'll see there's a photo there of the guys you can see there.
• 41:01
  SPEAKER_00: Um and you guys covered that.
• 41:03
  SPEAKER_00: Yeah, we did that.
• 41:03
  SPEAKER_00: And you spoke about how your sex life was impacted with a stoma and post-surgery, and that was a such a brilliant episode.
• 41:11
  SPEAKER_00: So if you if you want to hear about that, then please go back and listen to them.
• 41:17
  SPEAKER_00: Yes, well.
• 41:18
  SPEAKER_00: Um we've got to ask you one final question, and that would be from a clinical perspective, what advice would you give to someone who is newly adjusted to stoma life?
• 41:27
  SPEAKER_01: Again, like everything, I think that's such a broad question because the reason why somebody has a stoma is going to play a part in it as well.
• 41:35
  SPEAKER_01: Um for example, if and um correct me if I'm wrong, but if you've an IBD journey, sometimes having a stoma can give you a completely new lease of life with that.
• 41:45
  SPEAKER_01: Um and if if you've been diagnosed with cancer, it can be a different journey because not only are you trying to get your head around cancer diagnosis, but now you also have stoma as well.
• 41:58
  SPEAKER_01: So it just depends for absolutely everybody and the reason why you have a stoma.
• 42:03
  SPEAKER_01: I also think it depends if it's elective or an emergency.
• 42:09
  SPEAKER_01: Um if it's somebody going for an elective surgery, I would say get as much information as possible when it comes to surgery.
• 42:16
  SPEAKER_01: Look after yourself as much as possible and be as healthy as you can going into the surgery because it will stand to you afterwards.
• 42:24
  SPEAKER_01: And also get as much information as you can around it so that you're prepared for it.
• 42:30
  SPEAKER_01: If it is an emergency, probably my biggest advice would be be kind to yourself.
• 42:34
  SPEAKER_01: It is going to take a huge amount of adjustment afterwards.
• 42:38
  SPEAKER_01: Um and I know I've had cli uh I've had patients who woke up with a stoma and didn't even know what a stoma was before imagine what that must feel like.
• 42:50
  SPEAKER_01: Yeah, and it is so it's take your time with it, it is going to get um it is going to take time to to readjust to this.
• 42:58
  SPEAKER_01: Um and there is also when you have a stoma, there's sometimes what we call a a hidden loss or a disenfranchised grief, is what it's called.
• 43:06
  SPEAKER_01: It's where you have you've experienced a loss, but it's not seen by society as a loss.
• 43:13
  SPEAKER_01: So you're going through all the processes, you're going through anxiety, anger, denial.
• 43:17
  SPEAKER_01: There's often so much of it.
• 43:19
  SPEAKER_01: Um and it's just important to be kind to yourself and all of that, and as you're going through that journey.
• 43:26
  SPEAKER_01: Um and I would probably say as well, just to try and become as self-caring as soon as possible as well, because it will give you so much more quality of life just being and so much no, I shouldn't say quality of life, so much more independence.
• 43:39
  SPEAKER_01: Yeah.
• 43:40
  SPEAKER_03: I think for people as well, like just that might resonate with that, like all of those feelings are normal, like you know, grief, the change in your body if it's if it's emergency, like lots of people are going to go through that process mentally, physically, looking at themselves like it is a normal process.
• 43:54
  SPEAKER_03: So yeah, be kind to yourself.
• 43:56
  SPEAKER_03: And then fundamentally, like, you know, hopefully things should improve for you as well.
• 44:00
  SPEAKER_01: I always ask the question, would you talk to a friend the way you talk to yourself?
• 44:04
  SPEAKER_03: I such a good point.
• 44:07
  SPEAKER_03: Gosh, honestly, what would you say to someone else?
• 44:09
  SPEAKER_01: Absolutely not.
• 44:09
  SPEAKER_01: God no, I'd be vile.
• 44:12
  SPEAKER_01: And the next question to that would be: would that friend want to be friends with you if you spoke to them the way you speak to yourself?
• 44:18
  SPEAKER_01: And probably not.
• 44:20
  SPEAKER_01: Yeah, absolutely.
• 44:21
  SPEAKER_01: But gosh, yeah.
• 44:22
  SPEAKER_01: So it is so important to be kind to yourself.
• 44:25
  SPEAKER_03: Yes, yeah, definitely.
• 44:27
  SPEAKER_01: Yeah.
• 44:27
  SPEAKER_01: And it's easier said than done, but self-compassion is so important.
• 44:32
  SPEAKER_03: That was such a lovely way to end the podcast.
• 44:34
  SPEAKER_03: Like, seriously, thank you so much for coming.
• 44:36
  SPEAKER_03: It's been an absolute pleasure having you here.
• 44:38
  SPEAKER_00: Thank you very much.
• 44:39
  SPEAKER_00: Thank you.
• 44:39
  SPEAKER_03: You've been an absolute dream and honestly so insightful, so many useful hints and tips as well.
• 44:44
  SPEAKER_03: It's gonna really help so many people.
• 44:46
  SPEAKER_01: Thank you so much for having me.
• 44:47
  SPEAKER_01: No problem.
• 44:48
  SPEAKER_03: I hope you enjoyed it, and then see all of you next time.
• 44:50
  SPEAKER_01: Bye.