This Podcast is brought to you by the GOSH Learning Academy.
SA: Hello, and welcome to Master the MRPCH. In this series, we tap into the expertise here at Great Ormond Street Hospital to give you an overview of a topic on the RCPCH exam curriculum. So whether you're revising for an exam or just brushing up on a need to know topic, hopefully this podcast can give you the information that you need.
I'm Dr. Sarah Ahmed, a paediatric registrar and the current digital learning education fellow here at GOSH.
Today's episode is all about stomas. We're going to be talking to Nicola Greenwood, a gastrostomy and stoma clinical nurse specialist at Great Ormond Street Hospital. We're going to cover the different types of stoma, stoma care, common complications, and the important role that stoma care nurses play.
Nicola, thank you so much for talking with us today.
NG: That's a pleasure. Thank you for having me.
SA: So before we dive into detail about stomas, I wanted to start by asking, what would you like people to get out of listening to this podcast?
NG: I think one of the main things would be the correct terminology for what they're dealing with when they're talking about a stoma or to other people and to patients. Early preparation, knowing why it's important for early preparation, and communication. Communication is always vital.
SA: Yeah, I completely agree. And like you were saying, terminology is just so important because I feel like, especially from a medical point of view, we do just sometimes throw that term stoma around a little bit. So pinning that down I think will be really helpful.
Which leads me onto my first question. What is a stoma?
NG: So, a stoma, as we know it, when you say stoma, people will think that it's something that somebody poos out of. But it's not, it's actually an opening that has been made on the abdominal wall. So for us with stomas, we deal with input stomas, which would typically be a gastrostomy or a jejunostomy where nutrition, milk, medicines are delivered through, or an output stoma, so your colostomy and ileostomy, and also an ACE, an anti colonic enema, which is made to put things into, but not nutrition. And they're your output stomas where poo comes from instead of the bottom for hundreds of different reasons. So it's knowing what kind of stoma your patient has or is having which it goes back to the terminology which is so important.
SA: So is the stoma the hole itself?
NG: The stoma is the hole itself, yeah, so if you think of an input stoma, so your gastrostomy and your jejunostomy, that is a hole. You can't see anything, it will be a tract that's formed and something, a device, needs to go into that hole to keep it open and to deliver milk, medicine, nutritions.
Where an output stoma, they will bring the bowel out, so you will visually see something on the outside, so whichever part of the intestine it is – a small bowel, if it's an ileostomy, the large bowel, if it's a colostomy – on the outside of the abdomen. And then obviously you put something, a pouch over that then to collect stool.
SA: And so if we're thinking about the different types of stoma, do you separate it as input stomas versus output stomas?
NG: Yeah. So with your input stomas, your gastrostomies, so to give milk, children will have those because they've got failure to thrive, they're not putting on enough weight, they need topping up. They can still eat and drink orally, but they need extra nutritional support.
You've also got children with unsafe swallow, so they cannot take anything because they're aspirating. It's going on the lungs, it's dangerous. So, we don't tend to call them stomas as much as a gastrostomy.
But there's different devices that can go into the tract, but everybody will call it a PEG
SA: Yes!
NG: and it isn't a PEG
SA: Oh okay!
NG: It’s the device. So there's one device that's a PEG and it's not even the device. It's a Freka tube, but it's how you put it in. It's percutaneous endoscopic gastrostomy. So it's the way it's put in
SA: Oh!
NG: that’s what PEG is. So we'll get calls and they're like, their PEG, and we’re like It's not a peg, it's a Mickey button that they've got in, or it's a Melecot tube, or like, there's so many different brands, and the advice, the care that you give is so different. So if we don't know what it is, cause we can't see that patient, you can give the wrong advice to do it. So I'd say, please, if you don't know what device your patient has that you're looking after, or that you want, ask somebody, ask a specialist team. Just know that not every gastrostomy is a peg.
And parents get confused because there's so much out there and not every device works for every patient. You've got patients with sensitivity issues, so when you're referring a patient for a certain gastrostomy, just bear that in mind. Children with sensory needs and tactile, they don't like being touched. So if you have to change that balloon water and you have to change that button and connect an extension every time you're using it, they're not going to allow you to do it. They don't want it to be done. So it's going to cause problems for the whole family. So it's knowing your patient and asking the family. So giving that early preparation again of speaking to us, asking us to speak to the families about the different devices before they sign consent and go off for theatre. So we can tell them everything that's involved with caring for the gastrostomy, not just the surgical side of it and the problems and what can go wrong. They need, like, the whole picture.
SA: Before we talk a little bit more about your role, because you guys are so, so important. We've spoken a little bit about gastrostomies. Can we talk a little bit about stomas? So the different types of stoma and why a child might need one.
NG: Yeah, of course. There's lots of reasons why patients might need stomas and why they need it will affect why they have either a colostomy, an ileostomy, or a high output jejunostomy,
SA: Okay.
NG: So, with the stomas, you will get either an end stoma, and that can be an end on its own, or you'll get an end stoma with a mucous fistula, or we have loop fistulas.
SA: Could you just explain what those terms mean?
NG: I'll explain it how I'll explain it to my families.
SA: Yeah. Great.
NG: I say, if you think of from our mouth to our bottom, it's one tube, it's just a tube. It puffs out a bit for our stomach, o it can hold our food, and then it goes into our bowel, which is ziggly zaggly lines, and out of our bottom. So at the part of the bowel, so let's, let's say we're doing an ileostomy. Think of it then as a sausage, if you're doing a loop ileostomy. You pull the bowel out of the opening and they've cut down through this sausage, but they're not taking off the bottom layer of skin of that sausage that's still intact.
You then fold it over on itself as if you were kind of bending your sausage, so the part of the bowel is still connected, so then you've got two openings. You've got one opening that's still connected to your mouth. So anything that goes in your mouth is coming out of your bottom. So what comes out, goes in your mouth, is coming out of one part of that figure of eight, almost, that we've made, which will be your stool, and the other end of it is still connected to your bottom. So if you put anything in there, it's going to come out of your bottom. When they come to rejoin it then, they're still together, almost, so you can just fold them back up. Stitch round and the bowel is intact. You can have a loop ileostomy or a loop colostomy.
Sometimes part of the bowel is too damaged inside and parts need to be resected. So it will be completely separated. So you've got two pieces. They will stitch one end onto your abdomen. So there's your stoma that comes out, whether it be an ileostomy or a colostomy. And then they can either stitch the other part inside so you don't see it at all. It will still be connected to your bottom sometimes. Again, it depends on the type of surgery they're having. Or if not, it's still connected so it's still getting a blood supply. It's still kind of almost working, but it's just not getting any stool through it. Or they'll bring it out to make a fistula. So it t looks like you've got two stomas, and you need to know which one is which, in that case, on your patients. Usually, the fistulas will be midline, and it's a lot smaller and a lot flatter than what an output where your poo would come from. We like them because they're separated. The mucus fistula does what it says on the box. It produces mucus. So this snotty, greeny, creamy kind of yucky stuff that all our bowels have, but we just don't see it. If it's too close to the stoma, that mucus leaks on the bags and it makes the bag wet and it makes the bags peeled. So if you are a surgeon out there that's going to start doing these, your stoma nurses love them to be separated and we love a good spout on our stomas as well. A nice proud stoma. Sometimes you can't do that because you haven't got enough length of bowel. So they do have to put them quite close together.
SA: Amazing. Thank you. That really does clarify it. Could we move on to talk about some of the reasons why a child or young person might need a stoma?
NG: So we have our patients that we normally see, we see from neonates, so from birth, they'll go for surgery for a stoma on day one, or sometimes day zero and the main reason for those ones that happen is your anal rectal malformations, where the anus and the rectum haven't formed properly so there is no outlet whatsoever for stool to come so they usually go to theatre quite quickly. Those patients will have a colostomy where possible because there's not an issue with their bowel itself. Their bowel works fine they just haven't got the opening to let stool out.
In our neonates, we've got necrotizing enterocolitis. They don't all need to have stomas, those patients, sometimes the bowel can be resected. But most of them will then go and have stomas. And they're usually the ileostomies. You've got Hirschsprung's disease, which again is picked up quite early with the absence of the ganglion cells, so the bowel isn't moving. We try those patients first on rectal washouts, and if it's not successful, so they're still distended, they're still not emptying enough, then they will go up and have storms and then have the biopsies done during surgery to find out what part of the bowel is affected.
SA: Okay.
NG: We've also got patients who have traumas or accidents. Oncology patients who, when they start their chemotherapy, they have necrotizing fasciitis, abscesses and things round their bottom and their buttocks. And older children as well, they don't like to say that their bum’s sore and want people looking at them, so it goes too far and we have to keep the stool away from the bottom.
We've got your long term constipations, pseudo obstructions, Crohn's disease, colitis. Obstructions. I said perforations, didn't I, of like, swallowing foreign objects and things that get lodged in places that they shouldn't do.
So sometimes with our patients, there isn't time for us to speak to them and prep the family beforehand because it's emergency surgery. They go straight into theatre. We don't see them. If it's planned surgery, which is what we like, we like to speak to the families. It just eases them once they speak to us and it's not as scary. When I see families, I say, we're just moving the bum. We're just moving the bum hole from the bottom to the abdomen, but you see that relief come away from the face when they know it's just a bottom and surgery is going to be painful for them, but the actual touching of it and cleaning and hygiene is not because there's no nerves on it. So their child that they're frightened of hurting, they're not going to hurt.
SA: I really like how you’ve reframed that, that you’re just moving the bottom. Cause I think when you say it like that, it makes such a huge difference, doesn't it? Makes such a difference.
NG: Yeah. And that's what I like about the job when you see that relief of that fear disappear from them, that it is a bum hole. It's just a bit higher up. You can do everything, everything you did before you can still do you just need to be a little bit more careful like yeah there's nothing like that there's limitations of stuff and we say don't do it but that's why it's…the terminology and the correct information of what you give to these families because for them, nobody like, nobody talks about going to the toilet. None of us talk about pooing and we all have to do it. Everybody does it. If we don't do it, we're going to be very, very sick, but we don't talk about it. So just being open and saying it's normal. It's pooing. Everybody has to poo, there's ways around it, there's stuff you can do, like, you don't have to sit on the toilet, you're free now, and making that child, patient, young teenager, as at ease as you possibly can with the preparation beforehand from us, from people who know what it's going to be like and can do for them is so important.
SA: Yeah, it's so important. And you and your team play such an important role I think in these patients and their journeys so as well as talking to them and counselling them about what they can expect when they get their stoma or their gastrostomy, what other the aspects of their care do you and your team get involved in?
NG: so going through, if we go through a timeline of our patients, we like to be told about them as soon as it's decided they're gonna have a stoma and what they're gonna have a colostomy or a ileostomy. Speak to them pre-op, show them equipment, show them what it will entail. Then over four years old, we will site them because we need to make sure that that stoma is placed in the right place for that patient. Nobody's body is the same. We've got scars. Some children have got hairy tummies because of medications they're on for different conditions. They've had previous surgeries, some of them have had previous stomas, so can it go in the right place? Have they grown? Have they got a skin fold? Like most of us, when we sit down, we get that ring, so you don't want that stoma in a dip. So we have to get our patients up, standing, bending, tilting. Can the patients see it themselves? Because if they can't see that stoma, how are we going to expect them to do their stoma cares? Some teenagers don't want their parents doing it. The same as they wouldn't want them in the bathroom with them, they want to do it themselves. So we'll site them in the most appropriate way. And the best place for them. They'll go to theatre then. Surgeons will do their magic and produce these beautiful stomas where we've sighted them. And then we will see them day one. And we, we like to put the first bag on. Because taking the first bag off before one's gone on is not always the most comfortable-est bit. So if we can do putting it on, which is nice when they're still like in pain, that's much better for the patients then to do it. So we'll see them, we will talk through cares, what's involved, how to change the bag, keeping it simple on day one because everyone's still getting their heads around what's going on. So usually it is just talking about a bag pouch change and we'll do that. So as a rule here, we say pouches are changed every other day, unless it leaks. But in the beginning, we'll change it every day to get them as hands on as we possibly can.
And day two we'll go, we'll add a bit more information about showering, bathing, swimming that they can still do all these. Talking about food and drink, we just say, like, restricting fizzy drinks at night time because the more you drink, the gassier you're going to be and you're going to be up emptying the gas in your bags. Eat all your fruit and vegetables because we know our children love fruit and veg. But just telling them, like, it's going to help them, it's going to keep their bowel working. And try and make poo as normal as possible.
We'll then tell them and the family about safety aspects, what they need to look out for, when they need to go to hospitals, what can go wrong. You always have to mention it because you can guarantee that one family that you don't talk about it to, it's going to happen to. So we'll do that.
Then we prepare them for discharge. So get the patient or the family, they have to be comfortable and have to be able to change a bag change a pouch themselves without any input from us, because if they can't do it, they can't do it at home. It's going to be too overwhelming.
We then, because we look after patients from all over, like not just the UK, so we try and find them a local stoma nurse. The majority of areas do have them, so that if there is a issue, problem, or they just need that support, there is somebody there on the doorstep. We then have to set our families up with um, a stoma delivery company. Who will deliver the pouches and everything there, all the equipment they need, as they need them.
Our families all get our email address and telephone calls and ring us, just to check things, because they don't deal with this all the time. They don't know if this is normal, they don't know if the piece of sweetcorn's come out in my bag hole, is this normal? Because we don't look in the toilet at our poo, so we don't see the sweetcorn that doesn't digest floating round. Where you can see everything here. So we gave a lot of reassurance.
We do clinic then so they come and see us as they need to. Patients get issues with bag leakages,
SA: Yes.
NG: Some bags don't work for them, so we'll bring them back, we'll try different products. We have to do skin healing where stool has been left sitting on the skin and it's red. What you can only describe as nappy rash, but obviously it's on the abdomen. You can't put cream on it because the bag then won't stick.
SA: Sure. Yeah.
NG: So it's troubleshooting and it's getting those parents sent to your stoma nurses, your specialist. And if you haven't got a stoma nurse in the centre you're working, tissue viability. Like somebody to catch it early because the longer it goes on, the worse it is and the harder it is to sort out. And then we do closures and if patients are going to have the stoma closure and just telling them how to prepare themselves for it because teenagers don't expect to get a little bit of a sore bottom then going to the toilet once the stoma has been reversed and it's just prepping them, you might need a little bit of cream, wet wipe, just be gentle. You might poo a little bit when your bottom's getting used to it, don't worry, that's normal. So a lot of our job, even though we're not psychologists or counsellors, is psychology and counselling. As well as hands on work.
SA: I mean, you guys do so much. It's phenomenal. It really, really is. Just like how involved you are at every stage and how much relief and support you must provide those families and those children. I just think it's fantastic.
NG: Yeah.
SA: And the support that you provide medical teams as well, when we ring up going, this patient's got a PEG
NG: I'm like, it isn't a PEG. We do get a bit precious over our terminology.
SA: but you have to, you have to, don't you?
NG: I try and compare it, yeah, and I compare it saying, you don't say, they're ventilated, oh, just turn the oxygen down a little bit, like the nasal prongs, it's the same thing, but it's not, it helps you breathe, but it's totally different.
SA: No absolutely. So you mentioned a bit about stoma care. So can you just give us a quick overview of like the basics of stoma care? What would you want any healthcare professional to know about the basics of stoma care?
NG: What to use, so the equipment. Never just remove a stoma bag. It's like repeatedly having the stickiest plaster that you can think of and ripping it off. Like, it hurts. We're all precious when we take a plaster off. We all go, oh, we all make a little, like, twip with it. So there's adhesive remover sprays. Every hospital has their own adhesive remover. So like here we have Apeel. So if you can't get anything from us, just use Apeel if you're in our centre. So you start by taking it off. If you've got a neonate, don't spray them with a spray. It's gonna shock them. It's freezing cold. They're gonna cry. So you can have a wipe. There's wipes that you can use, and it's just like an oil base that takes away the stickiness.
The next thing is cleaning. You can't stick a bag, a new pouch straight back on there without cleaning the skin. You've got a residue of this adhesive remover on the skin, so the bag's not gonna stick. So clean it. Just water. Gauze, dry wipes. Dry it thoroughly. That's another mistake that people don't do when they're not used to it. You dry the skin.
The trickiest bit then, of the stoma, and this is where majority of people go wrong, is when you have to cut the hole. A lot of stoma product bags will have perforated dots round, and people think, that's where I have to cut to. I have to cut all that out and then stick it on. And then you've got all the skin that's exposed around the stoma. You cut that base plate, that bag, to the exact size that the stoma is, so you cannot see the skin around, because otherwise stool is going to sit on the skin and it's going to seep underneath it. And your bags are just going to leak continuously. So, it doesn't have to be, they don't come in perfect circles and they don't come in the same size as the templates in the box. So, you do have to get a little bit arty and cut them out. We would rather you wasted a full box of bags trying to cut that one bag to the right size than you stuck a bag on incorrectly and you just cut a massive big hole. You're round about the size that you want so it's fitting. Just as long as that skin's not showing. And you empty the bag. People are not emptying bags, so they're leaking. And observing that their skin, if it is red, getting support and stuff on earlier. So that's a basic care of doing, which, and I say to people, when we go and people have taped around a stoma bag, if it's leaking, never tape it. Take that bag off and change it. If a patient was in a nappy and they’d opened their bowels in the nappy you wouldn't put a bigger nappy over the top. You clean it. It's, it's the same thing. So it's get that poo off, get it in the bin.
SA: Fantastic. That's so, so helpful because there are certain things that from a medical point of view, we just don't get tours. And this is a perfect example of that. But I think knowing the basics is important so you can answer questions if you come across these families on the ward or in clinic, in A&E. It is really important that everyone knows the basics.
So we've spoken a little bit about some of the complications. You mentioned leaking, skin irritations. But what are the most common complications of having a stoma?
NG: Common complications we get some bleeding. It's always going to bleed. It's a highly vascular area. So whether it's a day old or 10 years old, you're always going to get some form of blood. Sometimes it's because of trauma. So it's been hit and touched and just a little bit of pressure and leaving it alone will stop that bleeding.
We counsel all our families before on what to do and what's normal. You've also got a retraction, which is where you're pulling a piece of bowel out that's supposed to be in a tube and you're not, you've split it in half and you're stitching it to the abdomen. Sometimes those stitches aren't going to hold, the muscle's going to give and the stoma's going back in, so it's retracting on itself. If it's too flat, when the stool's coming out, it's not going to make it into the bag, so it is going to seep down and sink. And sometimes it can go too far in. So then your stool’s inside your abdominal cavity is not coming out. It's leaking inside like they're your emergency situations. That would need surgery then, you have to go to surgery and have it resected, pulled back out and reformed and restitched repackaged around to the onto the abdominal wall.
You've also got prolapse, which is the most common one for us, especially with babies because they like to cry and their muscles are not that strong. So. You think of your anatomy and how long your ileum is. You've sewn it, a little part of it, to the wall. It's given and it's coming out. So you end up with this feet of bowel that are coming out on this tiny little baby. It can be quite scary. So I do say to parents, well it’s just, it's like a sausage coming out, but it's fine. Like it's messy. They're not just gonna keep coming. You can't put it back in. You do need to go to hospital.
SA: Yeah.
NG: sometimes if you leave them alone, they will go back in themselves. They'll just shrivel back up and go back in. Some centres will put sugar on. So that's almost a little bit like salt on a slug. It shrivels it up, dries it up so it'll go back in and make it smaller.
SA: Sugar, not salt,
NG: not salt. No, definitely not salt, sugar. And it's not something that we'd ever tell our families to do ever. We want them to go to a centre, an A&E and surgeons where even it's paediatric and adult surgeon will come to 'em. So it doesn't matter if they haven't got a center for pediatrics there. And then if not, they have to go to theatre as well.
We also get stormers when they're new that don't work, they still get an obstruction, a volvulus inside. So the bowel's producing, but it's not producing what it should be. So sometimes you need to look at what is normal stool and what is not normal.
There's high output. So patients can be producing, and you don't think anything of it. Some people be like, yeah, but they can't control it. So it's going to keep coming out. And you're like, no, no, no. They're very dehydrated. This is too much. So it's knowing your volumes of what is appropriate. And if that patient needs replacing the fluids that they're losing as well.
They're the main problems. And especially what you need to look out for and know who the right people are to call. We'll get people trying to call us. I'm like, no, no, you need the surgeons straight away, not us.
SA: Can you ever get an infection around a stoma? I feel like that's something people worry about a lot.
NG: You're gonna get your usual pseudomonas, staph things. It's dirty. We don't swab. We don't tend to swab bum holes for no reason. But people want, yeah, people want to swab there because they think it's a wound. It's a wound and it's not a wound anymore. The main issue you get is skin breakdown. And also, because if it's been left wet, you can get candida, so like thrush there, and that is one of the nightmares to treat, because you've got to get the powder, cotrimazole powder, to treat it.
SA: Sure
NG: And then the bags don’t stick, and the bags leak, and then you get bleeding. A lot of people, if they see redness, it's automatically an infection. And it's not always an infection. We don't get that many. It is normally, for us, broken down skin from stools sitting on it and not taking the bags off correctly. So you've broken the skin. And if left long enough untreated, then yeah, you are gonna get infections because you've got this wet, smelly, dirty area that's got bags on and off constantly.
SA: I really do think what you’ve said about reframing it not as a wound but as a bum just makes such a difference to, to how you think about it.
Nicola. This has been really great. I feel like I'm learning so so much. And I really do think people are going to find this episode really helpful. Can we wrap things up with a couple of quick fire questions? So, firstly, are there any useful resources that you would recommend?
NG: So most centres, most hospitals will have some information on their sites. They've also, if you go and speak to your specialist nurses, they'll probably have some goodies, some articles, some little cheat sheets and basic things to help you. But there's also some really good websites out there as well. So we’re not sponsored us, here at this hospital. So that means we get paid by the NHS, not a stoma company, so we're lucky we get everybody we can pick from all the different companies. So Coloplast, they have a website with some amazing articles, amazing stories, that you can like look at, print off, information sheets. There's also Salts. They do the exact same thing. They've got links, they've got information booklets. They're in different languages, pre op, post op information that you can print out and give to families. There's a charity called Buttony Bear, and they've got links, they give, I don't know if you've seen the teddy bears that have got a stoma pouch.
SA: yes, yeah!
NG: They provide us with them and the teenage hygiene packs. So they're an amazing support for us and they have information. You've got the Colostomy.uk website and the Bladder and Bowel website as well. That's really good and helpful.
SA: Fantastic. I will make sure all of those things are linked down below. And finally, what are your three takeaway learning points?
NG: Preparation! Get the correct information, get your nurses involved as soon as possible. You're all gonna take home your terminologies, you're not gonna call every gastrostomy a peg, you're gonna learn it. Stomas, it's not a wound, it's not a scary thing, just remember it's a bum if you're changing a nappy, these patients can be sensitive around this. And pooing is normal. We need to talk about pooing more. We all poo. It all smells. It's all the same. It all goes down the same toilet into the sewer. So just normalize pooing.
SA: Yeah, absolutely. Nicola, this has been so fantastic. Thank you so much for giving your time.
NG: No worries. It's been fun. Thank you for having me.
SA: Thank you for listening to this episode of Master the MRCPCH. We would love to get your feedback on the podcast and any ideas you may have for future episodes. You can find link to the feedback page in the episode description, or email us at
[email protected]. If you want to find out more about the work of the GOSH Learning Academy, you can find us on social media, on Twitter, Instagram, and LinkedIn. You can also visit our website at www.gosh.nhs.uk and search Learning Academy. We have lots of exciting new podcasts coming soon so make sure you're subscribed wherever you get your podcasts. We hope you enjoy this episode and we'll see you next time. Goodbye.
