Stoma video podcast

Video transcript

Hello and welcome to our stoma podcast. My name’s Sarah, I’m the lead stoma nurse in Leeds community and throughout this podcast series, we’re going to explore a range of topics, including how to live well with a stoma, hints and tips, troubleshooting, and discuss patient experiences.

For our first episode, we’re going to discuss what a stoma is, look at the three main types of stomas and the management for each of these. And today I’m joined by our nurse Vicky and our patient Martin. Hello, hello. And Vicky, we’re just going to get right in there. So what actually is a stoma? So a stoma is a surgical procedure where a piece of bowel is brought through to the abdomen and it’s created to divert the flow of wee or poo. Perfect. And we hear terms like colostomy, ileostomy, urostomy. Can you just briefly explain what these types of stomas are?

So a urostomy is where the bladder is either removed or bypassed and the tubes that come from the kidney are plumbed into a piece of bowel and then urine is sort of diverted through there. A colostomy is formed by a piece of bowel from the large bowel. And an ileostomy is formed with a piece of bowel from the small bowel. Perfect. And Martin, so you, I believe, have a colostomy. I do. So would you just briefly explain why you had your stoma?

I had to have it fitted. I was diagnosed with bowel cancer following a poo test. I left the poo test a bit longer than I should have, which is something that lots of blokes do and shouldn’t do. But I was then diagnosed, I had radiotherapy, it was decided I needed to have a full stoma fitted, a permanent stoma bag. And that was done about seven years ago now. Yeah, yeah, okay, thank you.

And Vicky, so would you briefly explain about the type of stomas, the output, that we would expect to kind of get?

So with the urostomy it’s urine, otherwise known as wee, that will come from urostomy. In terms of the output from an ileostomy and a colostomy, it’s stool, so poo. So with a colostomy, it sort of mimics a normal bowel, so the poo is quite a bit more formed softer in consistency, and in an ileostomy, it’s usually a little bit runnier, is the output. The aim is to get a nice porridge consistency, but at times patients may experience also quite a watery consistency there.

Yeah, thank you and Martin, would you kind of agree with that from the colostomy perspective?

Completely, I think the first two or three weeks after my operation, it was very runny, very watery. But as the weeks progressed, and the months progressed, it became much firmer, and now it’s just like normal poo.

Yeah, perfect. And I think that’s really important to acknowledge that it takes about three to six months after surgery for the bowel to settle down, and that kind of fits in with what your experience was. Yeah, and then in terms of the stomas then, Vicky, so how often would we expect to change, the frequency? What are the normal kind of frequency of changes?

So with a urostomy, we say every sort of two to three days to change the bag. That’s sort of similar with an ileostomy, so a patient can keep the bag on for up to every, can change the bag every two to three days as well. And a colostomy, it’s usually daily, so anywhere between sort of one to three times per day. But it’s also patient preference, and sort of depends on the activity of the stoma as well.

Yeah, perfect, thank you. And how often do you change yours Martin?
Yeah, I change mine probably two or three days, two or three times a day. Not necessarily because the bag’s full, but really just it’s, if I’m going out in the evening or something like that, it’s nice to have a fresh bag put on. So I always change it in the morning and at night. And then if I’m doing something during the day, I’ll put another one on then. Yeah, perfect, thank you. And Vicky, can you just kind of clear two topics up? So the like feeling of the stoma and bleeding. So are both of them kind of normal and what would we expect with the stoma?

So in terms of a stoma, there’s no nerves to the stoma, so patients can’t feel it when they’re cleaning it. So we always say, still be gentle, don’t be rough when cleaning the stoma. And if you do clean the stoma and you’re wiping the surface of it, and you do get a little bit of bleeding, that is normal. It’s a piece of bowel, it’s got a really good blood supply. So we wouldn’t stress or get panicked too much. It’s just, it’s all quite normal. Yeah, and did you, have you ever had any bleeding when you’ve cleaned your stoma Martin?

No, I haven’t. But I think that’s a very good point. I might have just had a little speck. Like a little spot, yeah. Just when you catch it. And to be told that’s normal, that’s really important, I think. Yeah, and was you told that in hospital? Was you told that you can’t feel anything? I’m not quite sure. I think by the fact there’s no feeling in the stoma, you actually also can’t feel when you’re having a poo. Yes, yes. And that took me a little bit by surprise. I bet that was a very strange sensation, really. Yeah, yeah. Yeah, well, thank you for sharing that. So that brings this episode to a close and we will see you on the next one. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Hi and welcome back to our Stoma podcast. My name’s Sarah, I’m the lead stoma nurse in Leeds community and today is going to be all about exploring what a healthy stoma looks like, the sort of products that you might come across and how to change your stoma pouch safely. We’re joined by Martin and Vicky again, so I think we should start with a demonstration. Yeah, definitely. Perfect, let’s go. Okay, where do you want me?

So usually what we recommend is getting all your supplies out ready before you start the process just to make sure you’ve got everything to hand. So if you’re okay are you all right just to lift your top for us Martin? Perfect. So we always use adhesive remover spray, it’s gold standard and so what we recommend is just peeling a little bit of the bag and then spraying the adhesive remover just letting that soak in for about a few seconds and then peeling the bag gently. So we use adhesive remover spray just to prevent any skin stripping or the skin getting sore as a result of people peeling the bags off. So we’re just going to spray leave for a few seconds and peel, spray and peel, spray and peel.

Now is that what you normally do Martin or would you would you would use more or do you ever use less? I think you’re going to tell me off because I think what I do and I spray it and you get it half off then I tend to pull it off and I know I’m not meant to do that. And that could be why there’s a little area around. I was going to say we’ve just got a little bit of area here of just a bit of redness and that could be a little bit of skin stripping. I’m sure it could.

So what we’re going to do is just give the stoma a bit of a clean. So we’re just going to clean the skin with dry wipe and some warm water. So healthy skin should look like the other side of the abdomen. Is that okay Martin? That’s absolutely fine yeah. Perfect. Fabulous so once we’ve given the area a good clean we give it a good dry just to make sure that that bag sticks really well. That’s perfect.

And I think what happens the more you do it yourself maybe you become a little bit complacent. You don’t pay enough attention to detail. Yeah, I see it’s like a five minute job. But is that right? Because yeah you’ve probably got a tiny bit of skin stripping and that’s exactly why we would always recommend the technique that Vicky’s showed today. And I’m just going to show another accessory that we might use in practice as well. So this is called a seal. Have you ever used one of these? I haven’t no.

Okay so we don’t always need to use accessories but this is a particular one that we might use and it might be there to help if you’ve got any sore skin any dips, creases or folds near the stoma because it just helps to fill those in. And so I’m just going to briefly show everyone how to apply that. So this is a technique that I use. And does everyone use one of them? Not necessarily no. So patients if they’ve got quite sore, excoriated skin it just helps to protect the skin. If you’ve got any folds or dips or creases around the stoma you might want to apply it just to help fill those and to reduce the risk of the bag leaking.

So there’s a couple of ways you can apply the seal. So I always cut it because I find it easier to mold it and stretch it that way but people prefer to stretch it. And you literally just want to pop it around the stoma. So do you leave skin showing or? No you want it as snug as you can around the stoma almost like a little scarf. And are they changed every time? So yeah the seal is changed every time the bag is changed. Lovely. And it just sits around the stoma and it’s fine for it to fold over like that. Lovely have you ever seen them? I’ve never seen one of these no but I’ve never had skin irritation or rashes. No that’s good. Perfect and then I’m just gonna remove that.

So what are you doing now Vicky? I’m just going to remove the seal and again use adhesive remover spray. So just peel, spray. And do you find that they’re quite tricky to get off or sometimes I think we have to use a bit more adhesive remover. Sometimes you might need to use a little bit more adhesive remover just in case because they are quite sticky. So why don’t we have a look at measuring the stoma? So Martin’s got a lovely little stoma and they come in all shapes and sizes as you can see on the measuring guide. So it’s not one size fits all is it Vicky? No it isn’t and there’s quite a few different ways you can measure the stoma so you can either apply it around the stoma like that so it’s quite circular or we can do what we call a side to side or top to bottom measurement where we fold the measuring guide and measure it that way.

Why do you, why Martin do you think it’d be good to get the right fit? Absolutely yes because too small it might snag on the stoma, too big it’s just clearly too big. Yeah and with your type of stoma obviously you’ve got a colostomy so it can get away with a little bit bigger but with an ileostomy where the output’s a bit runnier and looser we would definitely recommend getting a really good fit. Just to reduce any risk of leaks or sore skin there as well.

So we’re going to apply the new bag Martin if that’s okay with you. Yep. Perfect. So you always peel the backing off the bag. And some bags have little windows like this one so it’s easier for you to sort of see through and you just want to apply it. Thank you Martin. Around the stoma making sure there’s no creases or folds. Martin can you feel your stoma? No. No, and the reason that you can’t feel your stoma is because it’s a piece of bowel and the bowel has no nerve endings, so that’s the reason. So people can say it feels numb and a bit of a strange sensation for some people. It is odd because you look at it you think oh that looks a bit sore, a bit tender but there’s absolutely no feeling to it whatsoever. No it’s just surprising isn’t it. Just making sure that’s nicely got a good seal there. That’s it. Perfect and how does that feel Martin? Absolutely fine.

And we always recommend once the bag’s on if you just give it a little bit of a cuddle or a hug the heat from the hand helps it stick nicely, running your finger along the edge of the bag just to make sure it’s nicely stuck as well. Perfect. Thank you very much. You’re very welcome Martin. Well thank you for doing that Martin and Vicky. That’s a pleasure for me. No worries. Hopefully lots of people have found that really helpful and we will see you on the next one. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Hello and welcome back to another stoma podcast. My name is Sarah and I’m the lead stoma nurse in Leeds community and today we’re talking about some of the common problems that you might come across after your surgery and talking about some of the myths that you might hear and kind of doing some mythbusting. So I’m joined with Martin today and Vicky. So let’s start with Vicky, like what sort of problems would a patient experience in either the short term or a couple of months after surgery?

So post surgery patients might experience quite a few different problems and the common ones are things like ballooning, pancaking, leakages from the bags, sore skin, and parastomal hernias. Okay yeah and what was your kind of experience if you don’t mind me asking Martin? Did you have any problems or was you kind of told about problems that might have kind of come up?

I’m not sure I was told too many about these problems but I did experience quite a few of them early days. Ballooning definitely. A couple of times I thought goodness me my bag is absolutely full but it wasn’t. It was just full of air.
So that was something I thought well crikey. I’ve got to do something about that. Pancaking yes sometimes the poo doesn’t fall into the bottom of the bag and I kind of got used to that as well. And it’s all those type of things so everything you’ve mentioned, yes. I was struggling a bit at times with that.

And Vicky just briefly explain pancaking, Martin’s done a really good job of that and just explain maybe how we can address that. Yeah so pancaking is where the poo sort of gathers at the top of the bag and doesn’t sort of fall into the bag properly. So it’s quite a common thing with colostomies. So we usually use things like baby oil or olive oil in the bag just to help lubricate it, just to help sort of the poo glide into the bag better. And we always say just amending the diet as well just to see if we can soften the poo. Things like orange juice is a really good one just to help keep things a little bit softer or sometimes patients might require laxatives just to keep it a little bit softer too.

Yeah, perfect. Also, a couple of times all of a sudden the bag would fill very quickly with poo from nowhere and that took me a bit by surprise. Did it? And has that settled down? That’s calmed down. All these issues have calmed down. I don’t know after two or three months something like that. And that kind of fits with what we would normally say so wouldn’t we? We’d say it could take about three to six months after surgery for the bowel to kind of settle down because the bowel doesn’t like being touched so it’s a little bit in shock with what’s happened. And obviously you’re trying different diets and things so it can be very kind of normal and that fits with what you’re experience was. So thank you for that.

And then you mentioned ballooning Vicky. So what is that exactly? So ballooning is where the bag expands with wind. So in terms of managing ballooning what we would suggest is amending the diet potentially. So things like onions, garlic that can all cause a little bit of ballooning. So we would say maybe to avoid those types of foods or having things like peppermint that helps to settle wind and it just helps to reduce that as well. Correct me if I’m wrong Martin, some people produce more wind than others and I think we’re not going to get away from the fact that we pass wind.

Again it’s back to this thing of embarrassment. It’s embarrassing having the bag in the first place. We all wear baggy clothing now but if your bag’s full of air it’s quite, I think it’s very noticeable. Probably other people don’t notice it but again it’s something that you just got to get used to. I now eat far less spicy food than I used to. I used to like quite spicy food so I thought I’ve got to be sensible here. Did that used to irritate you? I think it did, yeah. That’s interesting. Thank you, and what about any other problems Vicky?

Yeah so patients may experience leakages from the bags so in that instance what we would do is maybe check the template size just to check that it’s not too big, the bag or it’s not too small. Maybe we might change a product just to see if that will improve or reduce the risk of leakages. Sore skin, it might be that patients need certain accessories just to help heal that sore skin for that short period of time and then they can just get back on with using their normal products. And did you have any leakages?

Yes I did, again in the first two or three months I had the leakages at night when I was asleep and I must have been filling the bag and maybe I’d been a bit careless and not stuck it down properly and I woke up and it wasn’t very pleasant. So a few maybe hiccups maybe paired with like activity like extra you know extra activity and obviously when you’re asleep you’re less likely to check it. I think it’s just a fairly sharp learning curve when you go home with it you are kind of on your own and you think goodness me. But you get used to it. I think three months in I felt loads more comfortable. My bag was way, way better and physically from my operation I was getting better from then as well.

Yeah and we already established that you have a colostomy. But you had a little bit of extra surgery as well if you wouldn’t mind discussing. I don’t know what the medical term is but I had to have my backside removed. Which turned out to be quite a substantial operation. So I’ve got a lot of scars in my bum. But when I got home again the first few months I was in a lot of discomfort. I could barely walk. I had quite a bit of bleeding from the scars and I did have to wear sanitary towels which again for a man is really quite embarrassing. It must be difficult, yeah. But that got better week on week and I could then start going for walks. I could go for a very light jog and then it got better. It’s like a lot of things isn’t it? If you’re going to have an operation of that size you’re bound to have issues like that.

So actually one kind of issue that a lot of patients experience is something called rectal mucus. What is that Vicky and why might it occur? So the bowel naturally has a mucus lining and if patients still have their rectum after surgery they may experience rectal mucus. It’s very common for patients to experience that and it’s nothing to be concerned about and it does generally settle over time. And what could be done if it kind of persisted after that three month period? So patients can use things like suppositories just to help sort of clear that mucus away.

Yeah, perfect. And Martin because of the nature of your surgery obviously you didn’t have that but you had a wound correct me if I’m wrong. I have yes. So there was obviously challenges in that aspect. Yeah there were. I think mine was much less of a problem. Mine was just a physical recovery from surgery. And I think it’s really hard because you know we see patients right after the surgery and you know we try and say it does get better. What would your advice be to someone who’s at the start of their journey?

It’s dead easy for me to say now, you’ve just got to be patient. It’s not going to be pleasant. Don’t think it’s going to be pleasant because it’s not. It’s very unpleasant. However the end result is a million times better than when you started. But to convince somebody that oh just be patient. It’s very difficult to do that. And were you told about the sort of problems that you might experience? I don’t think I was. Again at the time you didn’t really absorb too much information coming at you but I don’t think I was told about things like sanitary towels and leakages and stuff like that. I might have been but I don’t think I was. I think it would be really good to try and get that message across to people. So when you do go home I’m afraid you’ve got to get ready for this.

Yeah okay that’s good. Well hopefully this podcast will help with that. Absolutely. Thank you for sharing that. Pleasure. Yeah well thank you to you both. So thank you for tuning into the podcast today. Please join us on the next one. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Hello and welcome back to another stoma podcast. My name is Sarah and I’m the lead stoma nurse in Leeds community and today we’re talking about some of the common problems that you might come across after your surgery and talking about some of the myths that you might hear and kind of doing some mythbusting. So I’m joined with Martin today and Vicky. So let’s start with Vicky, like what sort of problems would a patient experience in either the short term or a couple of months after surgery? So post surgery patients might experience quite a few different problems and the common ones are things like ballooning, pancaking, leakages from the bags, sore skin, and parastomal hernias.

Okay yeah and what was your kind of experience if you don’t mind me asking Martin? Did you have any problems or was you kind of told about problems that might have kind of come up? I’m not sure I was told too many about these problems but I did experience quite a few of them early days. Ballooning definitely. A couple of times I thought goodness me my bag is absolutely full but it wasn’t. It was just full of air.

So that was something I thought well crikey. I’ve got to do something about that. Pancaking yes sometimes the poo doesn’t fall into the bottom of the bag and I kind of got used to that as well. And it’s all those type of things so everything you’ve mentioned, yes. I was struggling a bit at times with that. And Vicky just briefly explain pancaking, Martin’s done a really good job of that and just explain maybe how we can address that. Yeah so pancaking is where the poo sort of gathers at the top of the bag and doesn’t sort of fall into the bag properly. So it’s quite a common thing with colostomies.

So we usually use things like baby oil or olive oil in the bag just to help lubricate it, just to help sort of the poo glide into the bag better. And we always say just amending the diet as well just to see if we can soften the poo.

Things like orange juice is a really good one just to help keep things a little bit softer or sometimes patients might require laxatives just to keep it a little bit softer too. Yeah, perfect. Also, a couple of times all of a sudden the bag would fill very quickly with poo from nowhere and that took me a bit by surprise. Did it? And has that settled down? That’s calmed down. All these issues have calmed down. I don’t know after two or three months something like that. And that kind of fits with what we would normally say so wouldn’t we? We’d say it could take about three to six months after surgery for the bowel to kind of settle down because the bowel doesn’t like being touched so it’s a little bit in shock with what’s happened. And obviously you’re trying different diets and things so it can be very kind of normal and that fits with what you’re experience was.

So thank you for that. And then you mentioned ballooning Vicky. So what is that exactly? So ballooning is where the bag expands with wind. So in terms of managing ballooning what we would suggest is amending the diet potentially. So things like onions, garlic that can all cause a little bit of ballooning. So we would say maybe to avoid those types of foods or having things like peppermint that helps to settle wind and it just helps to reduce that as well. Correct me if I’m wrong Martin, some people produce more wind than others and I think we’re not going to get away from the fact that we pass wind. Again it’s back to this thing of embarrassment. It’s embarrassing having the bag in the first place. We all wear baggy clothing now but if your bag’s full of air it’s quite, I think it’s very noticeable. Probably other people don’t notice it but again it’s something that you just got to get used to. I now eat far less spicy food than I used to. I used to like quite spicy food so I thought I’ve got to be sensible here. Did that used to irritate you? I think it did, yeah. That’s interesting. Thank you, and what about any other problems Vicky?

Yeah so patients may experience leakages from the bags so in that instance what we would do is maybe check the template size just to check that it’s not too big, the bag or it’s not too small. Maybe we might change a product just to see if that will improve or reduce the risk of leakages. Sore skin, it might be that patients need certain accessories just to help heal that sore skin for that short period of time and then they can just get back on with using their normal products. And did you have any leakages? Yes I did, again in the first two or three months I had the leakages at night when I was asleep and I must have been filling the bag and maybe I’d been a bit careless and not stuck it down properly and I woke up and it wasn’t very pleasant.

So a few maybe hiccups maybe paired with like activity like extra you know extra activity and obviously when you’re asleep you’re less likely to check it. I think it’s just a fairly sharp learning curve when you go home with it you are kind of on your own and you think goodness me. But you get used to it. I think three months in I felt loads more comfortable. My bag was way, way better and physically from my operation I was getting better from then as well.

Yeah and we already established that you have a colostomy. But you had a little bit of extra surgery as well if you wouldn’t mind discussing. I don’t know what the medical term is but I had to have my backside removed. Which turned out to be quite a substantial operation. So I’ve got a lot of scars in my bum. But when I got home again the first few months I was in a lot of discomfort. I could barely walk. I had quite a bit of bleeding from the scars and I did have to wear sanitary towels which again for a man is really quite embarrassing. It must be difficult, yeah.

But that got better week on week and I could then start going for walks. I could go for a very light jog and then it got better. It’s like a lot of things isn’t it? If you’re going to have an operation of that size you’re bound to have issues like that. So actually one kind of issue that a lot of patients experience is something called rectal mucus. What is that Vicky and why might it occur? So the bowel naturally has a mucus lining and if patients still have their rectum after surgery they may experience rectal mucus. It’s very common for patients to experience that and it’s nothing to be concerned about and it does generally settle over time. And what could be done if it kind of persisted after that three month period?
So patients can use things like suppositories just to help sort of clear that mucus away. Yeah, perfect. And Martin because of the nature of your surgery obviously you didn’t have that but you had a wound correct me if I’m wrong. I have yes.

So there was obviously challenges in that aspect. Yeah there were. I think mine was much less of a problem. Mine was just a physical recovery from surgery. And I think it’s really hard because you know we see patients right after the surgery and you know we try and say it does get better. What would your advice be to someone who’s at the start of their journey? It’s dead easy for me to say now, you’ve just got to be patient. It’s not going to be pleasant. Don’t think it’s going to be pleasant because it’s not. It’s very unpleasant.

However the end result is a million times better than when you started. But to convince somebody that oh just be patient. It’s very difficult to do that. And were you told about the sort of problems that you might experience? I don’t think I was. Again at the time you didn’t really absorb too much information coming at you but I don’t think I was told about things like sanitary towels and leakages and stuff like that. I might have been but I don’t think I was. I think it would be really good to try and get that message across to people. So when you do go home I’m afraid you’ve got to get ready for this. Yeah okay that’s good. Well hopefully this podcast will help with that. Absolutely. Thank you for sharing that. Pleasure. Yeah well thank you to you both. So thank you for tuning into the podcast today. Please join us on the next one. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Hello, and welcome back to our stoma podcast. My name’s Sarah, I’m the lead stoma nurse within Leeds community, and today we’re talking about how we’re gonna adapt back to normal life after stoma surgery. So I’m joined today by Jasmine and Martin, and we’re just gonna have a little conversation. Yeah? So I’ll start with you Jasmine. Was you quite active before your surgery?

Yeah, so I absolutely love football. I played football before, and I’m back playing football now. I have been for the past couple of years now. I think after having a stoma I was a bit reluctant to play, just because I was a bit nervous about how I’d, how I’d get back into it. But I kinda started with light gym sessions just to see how my body would react, and I think that’s the most important thing. You don’t, you know, if you play sports and stuff, don’t go back full steam ahead, because it doesn’t work.

That’s a good tip. It’s the gradual build-up to it. So I started with light gym sessions, then I kind of involved myself in training again. Maybe play 20 minutes of a game, including the light gym session. You build yourself up. And yeah, I now play football full time again.

That’s brilliant. And was you given any, like advice before surgery, or after surgery, or both?

So I was told I could have, like, I think it’s specialist pants you could right, yeah which could be done on a prescription if you spoke to your stoma nurse. And then something called a guard, which is something, like a kind of a belt that you tie around your waist, just as a bit of extra protection. I preferably don’t like to wear either. But I always kinda make sure that my shorts are secure and stuff like that. I empty my bag before I start playing a game.

I think one important thing to mention is hydration. Definitely with an ileostomy, but I’m not it’s like with a colostomy. It’s a little bit different. But definitely a lot of Lucozade. A lot of isotonic drinks throughout the game, and sometimes I find just the odd blood sugar tablet maybe at half-time.

That’s really interesting, yeah. Just to keep my sugars going. Because I think if you’re having high output, your levels kinda drop, or that’s what I found for myself. My sugars would go a bit low or I’d feel a bit funny. And just introducing that into playing sports and stuff has really helped. Or as the alternative, I’ll drop a couple of electrolyte tablets into a, a big two litre bottle of water and carry on.

Perfect, yeah. Because with an ileostomy you just have to be careful, don’t you? Because it’s a kind of runnier output, you’re losing your goodness, so to speak, from your poo. Yeah. So you’ve got to replace that otherwise you’ll become dehydrated and quite poorly. And what about in terms of going back to exercise, did you have any leakages, or were you worried, and how did you kind of combat that?

Yeah, so I still do sometimes leak. And I find it’s when I’m hot and sweaty. Yeah. The bag kind of peels around it. So what I tend to do now is I’ll change it just before the game starts, so after the warmup. Yeah. And then I’ll kind of feel at half time if I think, “Okay, do I think it can last another 45 minutes?” Sometimes it, I feel it can, but just to be on the safe side I’ll kind of get a dry wipe, just wipe around the site to take any kind of sweat and moisture off, and stick another one back on and carrying on playing. Yeah. That’s good. Yeah. Perfect.

And if we go to you, Martin, then, so I know you’re quite an active gentleman. A gentleman. Yeah. It’s a fairly comparable story really. I did, I’ve always liked doing sport to a very low level. I’m no standard whatsoever, but I love doing it. But the operation stopped me doing that. It wasn’t the stoma that stopped me, it was my operation on my backside that stopped me. Just because I, I could barely walk to start with, and then I could walk very slowly, and it was very frustrating. And I was also a bit, I was quite embarrassed having the bag on, and I didn’t want to show people, so I didn’t want to get changed in public. But bit by bit it got better. I started going for very light jogs. I then started playing a bit of racket ball again, a bit of golf, and it turned out all right in the end. It was frustrating while I couldn’t do it.

I bet you were the same. Definitely. You’re sat there thinking, “Oh, God, what can I do.” I know. And I found also with not doing anything, you become lethargic. And your mindset’s a bit, You just get dull and fed up with things. Well, I did. So it’s, it’s really quite a nice boost when you can start playing sport again. You get back into it. And we were saying earlier, we both kind of feel we’re pretty damn good now. So it, it’s a nice feeling.

No, honestly, it’s so nice to hear, because we obviously get a lot of patients who are really worried, like yourselves. But some people might see something online where they, they shouldn’t or should you know, it can be quite confusing I bet. So hopefully this will demonstrate to people that you can absolutely live your life with a stoma. At the time, when we were both just got our stomas I certainly never felt I’d get back to playing proper sport. And I’m sure perhaps you didn’t either. But now that we’re there.

Definitely. I think there was some element in me that was like, I always knew I’d get there. Oh, did you? I’m just that type of person. What someone tells me I can’t do, I’ll want to do. But definitely, there was a bit of dread of, oh gosh this, like, this could genuinely be really it, and I couldn’t go back and stuff. Especially with, obviously, with an ileostomy and drinking lots of fluid, that also comes with higher output as well. So I was like, How am I gonna be able to this manage on the pitch? But you develop your own routines, and you find little ways and stuff that works for you. It might not work for you or somebody else with one. But you can definitely go there.

I think that’s really important that, like, everyone’s an individual, your recovery was different to yours and to another patient, and it’s not just like a linear straight line, is it? It’s up and down. You’re two really good examples of how you can absolutely live your life with a stoma. And then what about hernia prevention, was you advised about that?

I was, because I think I, I was told whenever I play sport, I have to wear this elasticated band. Okay, yes. Which is great. I just do that. I’m not sure I need it now, but I always put it on.

I wasn’t given any support. I actually do have a little hernia. It doesn’t really aggravate me when I play sports. It’s more with certain foods, like potatoes, if they’ve got skin on. White bread, it kind of irritates it, so. So you have to be a bit careful.

And just very briefly, so just for the viewers. So a hernia is, so basically, you have the surgery they create obviously an opening, they weaken the muscle of the abdominal wall. And as a result of that, things can protrude out. They’re not kind supported as much, and that’s essentially what a hernia is, it’s a weakness in the, the muscle wall, and it can kind of present as a bit of a swelling like a little golf ball. So you know it’s just something to consider.

What about when you go away travelling? What about when you go away, like traveling, you know, because it’s all about kind of getting back to normal, I suppose. What about traveling? The first time, was it a bit scary?

Definitely. Yeah. I went abroad probably three years ago now, and that’s the first time I’ve flown with an ileostomy bag and I didn’t know what to expect. I thought with the air pressure, is my bag going to burst everywhere? Like, all these little things. But it didn’t. I think as long as you’ve got a few supplies with you on the plane and stuff, you’re fine. Again, I’d just make sure you had, like, isotonic drinks you can buy out there, electrolyte tablets that you can take over from here yourself. And plenty of spray. Just because I find the air pressure takes it out. Yeah, that’s good. As long as you’re good with supplies you’re okay. Just being prepared, I suppose. Yeah, definitely. Yeah.

I think I was the same. My issue was, have I got enough bags with me to last this week or two weeks? Because if I’m, use two or three a day, I think, “Well, I better take five. Oh no, better add another couple in.” And if you’re not careful, you finish up with a suitcase just full of the damn things. Yeah. But it, on a serious note, I made sure I definitely had enough bags, enough sprays, everything.

So in summary then, so obviously you’re examples that you can live your life with a stoma and I suppose it’s just demonstrating that to people that, you definitely can. So thank you for sharing. Pleasure. So that brings this episode to a close. Please join us on the next one. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Welcome back to our stoma podcast. I’m Sarah. I’m the lead stoma nurse within Leeds community. And today we’re going to look at why someone might experience a leakage or have sore skin with their stoma. And I’m joined today by Vicky, our nurse, and Jasmine, our patient. So we’re gonna have a bit of a conversation around, around that topic. So Vicky, so why might someone have a leakage?

So patients may experience leakages depending on the consistency of the output. So if it’s quite watery, they might experience a leak due to that reason. The template size, so if the template’s too big, if it’s too small, they might get a leakage because of that reason as well. It could be a bit of user error. Are they applying the bag correctly? Are they in the correct position? So those, those are quite a few of the reasons why people get leaks.

Yeah. Perfect. And Jasmine, if you don’t mind so you’ve got an ileostomy. Yeah. So the ileostomy output is normally quite runnier compared to a colostomy. So ileostomy patients do tend to kind of experience more leakages. So can you talk me through, like was your output like quite watery, or is it watery, and has that kind of impacted on leaks? And have you had leaks?

Yeah, definitely so. I can definitely say I’ve had leaks. It kind of for me depends on what I eat, basically. So if, say if I’ve not eaten much during the day, that can actually increase my output. If I’ve had quite like a starchy meal to start the day off, and then I’m drinking lots of fluid and not really eating, that can obviously increase my output also. I definitely agree with increased output. I think if your site size changes as well so sometimes that can get bigger or sometimes it can get smaller and that can obviously affect the leaks. I think once you’ve got an ileostomy bag, one thing that’s important to note is that I think you can sense your leaks more than what you realise as well. So once you get used to the feeling of what a leak feels like, they’re less likely to be bigger.

That’s interesting.

Because you can feel, or that’s my personal experience of it definitely. If I’ve had quite a lot of veg and then, say, for tea and go to bed I often do leak then as well because of the, again, the high increase of output.

Yeah. Okay. And was you kind of explained about leaks in the hospital or, like, that this might happen, or was it quite, like, a shock when it did happen? Was you kind of prepared or not prepared?

It was definitely explained. It was very, like, generic, of, you know, you, you may have a leak from time to time depending on what you eat. I definitely wasn’t prepared for how much I would probably leak in the first probably month, I’d say. And again, that’s just about your diet. It’s about getting used to what triggers your ileostomy off, and what is kind of, you know, steady to have, and what can you do to combat it. So say, for example, if I had beans for breakfast, I want to at lunchtime be having, like, a sandwich for the carbohydrates to kind of thicken that up and combat the output.

Yeah, kind of balance it out.

Yeah, definitely.

And then Vicky, we’re talking about, like, the management, like what other products and accessories can we kind of use?

So in terms of output, you might want to try things like loperamide just help thicken the output. Obviously managing it with diet as well. Obviously if your patient’s getting a lot of leaks and they’ve got sort of like dips and folds and creases near the stoma, they might need accessories such as things like seals just to help fill the dip, just to try and reduce the risk of a leak there.

Yeah, so there’s quite a few tools. And what we would say if you’re experiencing, experiencing a leak or sore skin, definitely to get in touch with us because we’re here to help. You know we just want you leak-free. We want you to have perfect skin. And there’s all sorts of tools and different products and accessories that we can try. I think you agree, don’t you?

Yeah. Definitely.

Then going on to sore skin then. So why might someone get sore?

So they might get sore skin if they’re experiencing leaks. That can cause sore skin. If they’re not using the right product. Sometimes people have allergies, contact dermatitis to products. They can get sore skin for that reason as well. If they’re not using the products correctly in terms of removing the products they might get skin stripping if they’re not using enough adhesive remover. So some of those reasons.

Yeah. And I’m sure that you’ve probably had sore skin haven’t you, if you’ve had leakages? And how did you manage that, Jasmine?

So I tried a few things. I tried a little, I think it’s a seal that you kind of stick around your site and then apply your bag to it. I did try that. I’ve tried the solution which works really well, especially if you’re really struggling with it, because it kind of clears it up very quickly. What else have I tried? Gosh.

Did you try powder?

Yes. I’ve tried powder just to kind of dry it out.

In terms of the leaks then, I think we’ll agree, the sore skin rather, that the main thing is addressing the leak. So you could try, if the bag’s leaking, you could try the, the strongest bag in the world, or the best powder, but you, you need to address the leaks.

Yeah. Yeah, definitely.

There’s lots of different things that we can try. Yeah. Well, thank you. That’s perfect. So thank you for joining us on this episode today, and we will see you on the next one.

If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Welcome back to our stoma podcast. My name’s Sarah, I’m the lead stoma nurse in Leeds. And today we are talking about diet with a stoma and blockage advice. And today I’m joined by our nurse Vicky and patient Jasmine, and we’re gonna have a conversation around this topic. So Jasmine, you’ve got an ileostomy, is that right?

Yeah.

So what sort of diet advice, if you don’t mind me asking, was you given when you was discharged?

It was mainly no spicy food not too much fizzy sweets. What else was there? There was, oh gosh, fizzy drinks was another one. Just be careful around fibre, not too high in fibre. I think what I’ve kind of learned is you can have everything in moderation or a smaller amount of what you might have usually had. I think maybe it’s said as to avoid pancaking, to avoid leaks and stuff like that, but I fairly tend to be balanced throughout the day, or if I know I’m gonna be having something high in fibre at tea time, I’ll kind of have the carbs throughout the day so it’s not too bad.

Yeah. Perfect. And I think there can be quite a bit of scaremongering, particularly with an ileostomy. Let’s just kind of just simplify between colostomy and ileostomy again. I know people will have watched the first ones maybe. Just with diet Vicky, so colostomy and ileostomy.

So in terms of what they can eat? Is that right, Sarah? So with a colostomy we would say you can eat and drink as you would do normally. There’s no limitations to what you can and can’t eat. Just to have a healthy, balanced diet, fibre in the diet, just to reduce the risk of constipation there and it’s a little bit different with an ileostomy. So there’s foods we sort of suggest to avoid, just to reduce the risks of blockages. But we say to avoid things like seeds, pips, nuts, mushrooms, sweet corn.

Sweet corn, yeah.

Sort of skins on fruit and vegetables just because they can potentially block the stoma. So we just say you can avoid them. Patients do still eat them, and they are okay. But yeah.

And I think that’s really important to say because, you know, some people love corn on the cob, you know? And mushrooms. And we want you to kind of live your life as normal and enjoy what you would like to eat normally. So I guess it’s kind of adapting to that. Is there any particular foods that you thought that you couldn’t eat, that you’ve, like, managed to eat or?

I think it’s kind of talking about veg-wise, the sweet corn. I did love sweet corn before I had it done. And to be fair, I’ve had it in moderation and I think I got a little bit too brave with it, and it did end up causing me a blockage. Which was, it’s uncomfortable, it’s not a nice experience, and obviously the advice around that is to try and drink a bit of hot water and stuff like that. Unfortunately, I had to go to hospital because it got the better of me. And yeah and then they helped me there and it unblocked.

And I suppose then what other kind of, what’s the advice then that we’d give to kind of reduce the risk of a blockage?

So preventing the blockage, it’s food advice. So with an ileostomy it’s particularly of foods to particularly avoid, so things like nuts, seeds, pips, mushrooms, sweet corn skins on fruit and vegetables. Although patients do still eat those and they are okay. But we also say to chew foods really well. Cook them soft if you can, just so it’s easier to digest and to reduce the risk of a blockage there. If a patient ever contacts us and says “I think I’m, I’m experiencing a blockage, I’ve not had output for a certain amount of hours,” we always say to rest the bowel. So try and avoid foods, drinking clear fluids or fizzy drinks just to see if that will release the blockage there. A bit of gentle mobilising if they can do. Bit of a gentle walk or massaging around the stoma. Bit of heat from, like, a hot water bottle or a heat pack. That can generally sort of release a blockage there. But obviously if they start to get sort of severe abdominal pain, nausea, vomiting we say straight to A&E.

And you’ve obviously had that experience. So have you had, like, less severe blockages?

Definitely. Yeah, I think I’m a bit, definitely more cautious of it, and if I notice a particular food, like say for example, seeds and nuts and stuff like that, if I notice that it’s slowing my output down I kind of avoid that now and just not really tend to eat them kind of foods. I think when I even thought my output’s slowing down, and I’ve had this, again, like the hot baths, hot drinks, the massaging definitely just tries to help.

Perfect. And I think it’s just important just to say as well, there’s different types of blockages. So it can be caused by food. If you’re quite new after surgery it could just be scar tissue. Or sometimes there can be a little twist in the bowel. There’s different ones and I suppose, like Vicky’s just said, it depends on the severity. And then I suppose with diet, Jasmine so, like, if you think to how you were when you came out to how you are now is there a, a big difference? Or have you, do you feel like you’ve got a bit more confident?

Definitely, I think it is a trial and error, definitely at the start and I think as you get used to having one, you kind of get in a routine. I remember when I first came out I’d stick to the same food that I knew wouldn’t give me a high output because I hated it. I didn’t like it. Like a safe food. But again, I think as I’ve got the more knowledge and older and advice and stuff, I’ve just tested a little bit. If I’m trying a new food, I’ll always have a little bit to see how it reacts to my ileostomy, and then if I feel like it’s okay, just slowly increase it.

Yeah. No, that’s good. Lovely. Yeah. Well, thank you for sharing that. So that rounds up the end of today’s podcast, and we will see you on the next one. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net

Video transcript

Welcome back to our stoma podcast. My name’s Sarah, I’m the lead stoma nurse in Leeds community. And today we’re talking to two patients, Martin and Jasmine. And we’re going to have a discussion about their journey and how they find life with a stoma. So, to you, Martin, so did you know what a stoma was? Because there’s not you know, I don’t believe that there’s, it’s getting better, isn’t it, with the publicity? But, you know, lots of people don’t know what a stoma is.

I didn’t fully understand it really. I didn’t think enough through it. I know when I had my biopsy my consultant came down and said, “Look, I’m really sorry, Martin, I’ve got to tell you, it’s going to be a permanent bag.” And I’m thinking well, I’m not quite sure why that’s such bad news. I didn’t quite grasp what I was being told. And then it was explained to me. And even then I thought, “Well, does it really matter?” And quite a few people said to me, “Once you get used to having a stoma, it’s actually not that bad.”

And, like, when you first saw your stoma after that operation, how did you feel?

Dreadful. I remember while I was in hospital, I had to go, one of the nurses took me for a shower and I caught myself in a mirror. And I looked, I just felt awful because I looked, I had tubes coming out of me everywhere, and the stoma was there. And that was, that was probably one of my low points. But the nurse was very good and she told me, “I understand, but you’ve gotta be more positive.” But she was very good. And then I started getting better from there.

That’s good. That’s good. And what about yourself, Jasmine? So what, what type of stoma do you have and what did you have it for?

So I have an ileostomy bag so that’s connected to my small bowel. And I had it basically for chronic constipation. So I had a lot of medication given to me, and I just couldn’t go to the toilet, and it’s something that just got gradually worse. I think because I had it at 15, it’s such an age where you’re a teenager, you know, you’re transitioning through so many stages in your life, like there was high school, there was college and obviously university. It is a very different path to yours, Martin. And there’s a lot of emotions that come with it anyway without having something. So it was very difficult. I remember I didn’t want to tell my friends, and then I started being a bit more open in college, and I think that’s probably just the maturity of it all. I told a couple of friends in school and it was, “Err, what’s that?” Kind of, and I think that made me internally kind of shut down a little bit. But again, looking back on it, it was probably a maturity thing. In College it was well more received, I’d say.

I mean, I think there needs to be a little bit more education probably for college purposes and educational purposes. I remember my mum actually having to go into college before they’d let me go, just to, like, in on my own to explain what it was and stuff like that. And then I think obviously you get to 18, you want to start going out with your friends more and stuff. You want to drink alcohol and stuff like that. You know, and stuff, it’s part, you know, part of enjoyment. It is difficult. Yeah. I think it’s good to know the side effects of alcohol, the, the pancaking, the ballooning and stuff. You know, sometimes you might need to empty it on a night out and, you know, it can be a little bit embarrassing sometimes. And I’d find myself kind of waiting for, like, the toilets to be completely empty or going down a side street and emptying it. Because I just felt this almost embarrassment and anxiety about being in a toilet. And then obviously as you get older, you get into relationships and stuff, and it’s, having to explain you’ve got this ileostomy bag and dreading their reaction. And, you know, I’ve been quite lucky. It’s always been a positive reaction and stuff like that, which is good. But I, you know, from reading online, you can see sometimes the negative comments and how them reactions can affect someone and I, you know, I still remember a bad reaction from school, and it’s never left me, so.

Because that kind of stays with you, doesn’t it? Did you have any experience with that, Martin, or?

I think I’m an awful lot better off than yourself. You’ve been through a really tough time. It’s very easy to get inward-looking. I could think of myself thinking, “Oh, poor old me, I’ve got this stoma and I’ve had this operation.” But I haven’t gone through the emotional turmoil that you’ve gone through. I just feel sorry for myself. So I’ve a nice family support around me, and you kind of think, “Well, actually, I’m not that bad.” I look at myself now and think, “Mm, it wasn’t much fun when I had it.” But now. But yeah, I’m tons better now. And I didn’t have the pressure that you, you have, you were put under really.

And let’s talk about some of the practical, kind of, side of things. So, you know, like going out for the first time. Going on holiday. What about clothing? Because I have a lot of patients who are quite worried about what to wear and what’s both of your experience. Who wants to?

Well, from clothing it’s quite easy, unless you’re some hulk of a bloke and wants show his muscles off. You can, you get away with looser fitting tops. I hardly ever let my bag get full. I will change it perhaps a little bit more often than I need to, just so that it’s a bit flatter. I’m obsessed with, if I go out in the evening or go out anywhere, I’m obsessed with taking spare bags with me. I’ve got a little black bag over there. With bags in it and the spray. And nobody knows what’s in the bag. It just looks like a man bag or something, so. But I won’t leave the house without one. Just in case.

I’m very similar. I won’t go anywhere. It’s just, and sometimes I’d put the odd spare top in if I know I’m gonna be there a little bit longer, just in case. Or if I’m going out to a restaurant and I think, I don’t know if there’s something there that I could eat that would be suitable, if I have to eat something a bit different, at least I’ve got the spare change of clothes as well.

So what, is that advice that you’d definitely give to patients who are kind of starting the journey, to be prepared?

I think it relieves the anxiety. Like, at least if it goes wrong, you, you’ve got something there to cover you. Yeah, yeah. Beause I think, I don’t know how you found, but the first few times I went out, I was very nervous in case something went wrong. I felt people would notice I’d got this bag on. And people don’t notice. No. No. No, it’s just because you know. But I think they do. So therefore, that’s bothering me a lot. And you mentioned earlier that you wear a band. So does that kind of disguise? I do to play sport, that’s absolutely great. As I say, I don’t really know whether I need it now. But I put it on anyways, because I’m just so used to having it on. Yeah, yeah. That’s good.

And do you, do you have anything that kind of disguises it or keeps it more discreet?

I wouldn’t say anything that kind of disguises it. I think from my side, I think clothing’s an issue. I don’t know, I don’t know 100 percent why, but me personally, I don’t like wearing jeans. I find if I’m wearing jeans, I don’t know if it’s because of where my ileostomy is situated that it, I feel like even if it starts to fill slightly, it’s very uncomfortable. So I prefer to wear shorts, but then you go to work and you can’t wear shorts. So it is sometimes a struggle. But I think if you find the looser clothing that suits you, that’s suitable for different events, then you’re okay. And I’ve heard from some people that just have it, like sizing up or going up a couple of sizes. Braces instead of belts for men. Or women, to be honest.

There is one thing that has just come into my mind. Actually, if you’re going on holiday, how confident are you to actually show your bag off? If you’re sitting around a swimming pool are you confident enough to sit there in shorts or swimming trunks or a bikini or whatever and show your bag off? And that’s a, that was a big thing for me. I’ve done it a couple of times, but I’m still not very comfortable. Whereas other people are perhaps a lot more comfortable showing it off.

I’m, I think I’ve, because of how I am, I’m sort of private when it comes to, showing it and stuff, so I’d more wear, like, shorts. Like, I wouldn’t wear a bikini on holiday. I’d have probably, like, if it lipped over, the top of the bag, that’s fine, but I think if I had to have, like I say, a bikini on, for example I don’t think, I think me personally, I’m not ready for that kind of reception from people. Because you see, like, on social media, don’t you? All the girls in the bikinis and men in the trunks, which I love to see, but it’s not for everyone, is it? No. And I think that’s important to kind of say that it’s not just one size fits all. Definitely.

And are there any other kind of topics that you think might be helpful for anyone?

I’m not sure for me. I think as we said earlier, I think if you manage to get a positive mindset, which is a kind of bit of a cliché. And it’s, I’ve got a fairly positive mindset now. I don’t think I had it five or six years ago. Exactly how you get somebody to have a positive mindset when you’re at the stage of just having your bag fitted, I’m not sure. But if you could, that would help enormously. But, yeah. So that’s, like, in hindsight in what helped, yeah.

I’d definitely like to bring up the fact maybe for that teenage group that are kind of even because I was 15, and obviously at 16 you transition to adults in the NHS and stuff. So I don’t know if there could be more of a something in between that could support, because the children go through obviously different life stages, like I’ve explained. And even for families as well, like, I feel like as much as your care and ileostomy is very much about you, there’s still these other people that want to help but sometimes don’t know how to help. Like, I know my little sister at the time, she was nine, and she could see she wanted to help, but she just didn’t know how to. And same for my mom and dad and stuff. Sometimes it’s a mental battle more than it is a physical one. And there is a lot of, like, with children, there’s lots of books that you can get I don’t know if you’ve seen that. I think it’s called My Grandma’s Bottom. My Grandma’s New Bottom. And it’s just kind of, like, normalising it and just kind of, you know, if you’re open with them they’ll kind of accept it and understand it.

Yeah. Well, thank you for sharing that. I’m sure everyone’s found it really helpful. And that brings us to the end of this episode, and we’ll see you on the next series. If you have any questions or concerns and would like to speak to a stoma nurse, then please do contact our service on 0113 843 3715 or alternatively email lcht.stomaserviceleeds@nhs.net