Season Seven Episode Four: Ask The Ostomate
Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions or concerns.
Hannah: Welcome to stoma and continence conversations from Coloplast Professional, where healthcare professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson. I've worked in specialist care and I'm currently the Ostomy Care Associate Education Manager at Coloplast.
Hello and welcome to this podcast. A really exciting podcast today. I've titled it Ask the Ostomate. Now, as you all know, we had ASCN a few weeks ago down in Brighton and I was asking nurses, so people like yourselves, to ask questions to our ostomates. I had several lovely questions. Thank you all of you that gave them to me. And now I have my little dream team panel here, so I'm going to bring them in now.
Sarah: I'm Sarah. I have a colostomy which I've had for sixteen years due to a rectovaginal fistula. Never really got to the bottom of why I've got it. I don't have bowel disease. Did have a ten pound baby that flew out, so she might be the root of it, but she's worth it.
Sammy: So my name's Sammy. I'm twenty seven years old and I had my urostomy done about five months ago now. I had my ostomy formed because about three years ago I went into bladder failure and then I had lots of nasty infections and yeah I became resistant to antibiotics so I had to be taken out.
Sophie: So I'm Sophie and I've got an ileostomy and this is due to bowel disease, ulcerative colitis and I will have had it three years this November.
Ben: I'm Ben, I have had my ileostomy for about sixteen months now, mine was due to Crohn's disease and ultimately becoming a primary non responder to meds, so it was my best chance of getting a better quality of life.
Anna: I'm Anna, I've got an ileostomy and a urostomy. So I had my ileostomy in March 2020, which then failed a year later, so I had to have it redone.
in May 21. And then I most recently had a urostomy done in June this year. So I've got both of them due to severe endometriosis that destroyed my bowel and my bladder. And yeah, that's me.
Hannah: Thank you so much guys for joining me. I say my little dream team for the day. As you can see, we've got quite a variety of stomas.
We've got quite a variety of reasons for stomas. So hopefully I'm going to be covering everyone's questions today. So, we're going to have the first question now.
Catherine: Hi, my name's Catherine. I'm one of the colorectal nurses at the Queen Elizabeth Hospital in Birmingham. My question is, if you could give just one piece of advice to a new ostomate, what would it be?
Hannah: So I'm going to throw that over to a few of you. So Sarah, Sammy and Ben, because you've all been varying lengths of having your stoma, what would you say at that point?
Sarah: Well, I would say that at the beginning. It feels like you've got a mountain to climb, but looking back, I would say, look at little small steps.
You will improve gradually, you get used to it gradually, and look back, and then you'll realise how far you've come. My stoma nurse said to me, you will get used to it, and do you know what? I did not believe him for a minute. And do you know what? I did get used to it, and sixteen years on, I don't like it, I'll probably never like it, but it is what it is, and I'm damned if it's going to rule me.
Hannah: Really nice response there, and I love that, that whole thing of, you're not going to let that stoma rule your life, and I said you've had your stoma now sixteen years, I think you are certainly, I'm going to say you're the most mature ostomate, you're the most mature of the group here Sarah, so you can certainly, you've got your stripes on that one.
I'd really like to hear from you next Sammy. cause I'd say you are the newest of all of us with the stomas, so what would you say?
Sammy: I'm obviously still, like you say, very new to the whole ostomy world and I think the one piece of advice I would give really, and it sounds incredibly cliche, but I suppose just to take your time,
I had so many. I guess expectations in my head at the time, and I was like I want to be out of hospital at this time, I want to be up on my feet by this time, and it doesn't always work like that sometimes there's setbacks when you move back and forward, and I'm still in that area at the minute, and I think I always have to remind myself that there is no point in time that have to be a certain way. Just take your time and just go with the flow.
Hannah: Really like that. It's all about being kind to yourself and managing those expectations, like you say, and not putting that too much pressure on yourself. Now, Ben, I'm going to come to you next. Ben, you are the in between post, because they normally say it takes about eighteen months to two years to settle with your stoma and you are at that magical milestone now. So what would your bit of advice be?
Ben: For me, I had lots of questions and you've gone through such a change of sorts of emotions and all sorts of things that you're trying to process within yourself and to do that in your own head is really quite hard and you can end up in in quite difficult and more challenging places.
It's not for everyone and I'm not saying this is something that you have to be so active with, but for me being part of a social media community is really important to have a network of people around you who have been through similar things at different points as well, earlier points and people who are later on but having that ability to know you're not alone, that you're not completely different and isolated, just to be able to chat with like minded people is, it's been a really important part of the process.
Hannah: Absolutely. And I will add to that, having met all you ambassadors, the power in the room when you are all together in a room, it is that team spirit that you all have together. And it's just what you said there, Ben. It's that community. And a stoma, it is a community. You are in those unique positions.
And I'd say it's really quite a powerful thing when you're all in that room together. It's amazing. So the next question we're going to put in now.
Jess: Hi, I’m Jess, I’m from Oxford. And i’d really like to know what you guys think would help from a stoma care nurse point of view, and then what we can do better, or how we can improve on that.
Hannah: So that was Jess Lane in Oxford, and she wanted to know that from a stoma nurse point of view, what could be done better, or how could the service be improved. It's always a bit of an intriguing question, this one. Going to ask a few of you about this one. So, Sophie, what would you say on that?
Sophie: I've got a few points. So the first I would say is for them to be available seven days a week. We can't guarantee that we're going to run into issues Monday to Friday, nine till five. So I think, yeah, definitely there'll be more availability out of hours and of a weekend. Maybe using more things like booking systems for patients because, it can be really quite hard work to communicate with your stoma nurses.
And yeah, following up more so on post surgery care, making more contact with patients. And then finally, my main thing for stoma nurses to make their service better is to listen to the patient. We're the ones that are living it. We know exactly what we're going through. We know our bodies better than anyone else.
And I would just say, always listen. And it won't necessarily be that they can, they've got the answers there and then But yeah, listen to us and guide us.
Hannah: How about yourself, Anna, especially coming from the, having the two stomas, you've been quite a unique position there. What would you say on that one?
Anna: I've had completely varying experiences with technically all three of my stomas. Cause I had two, obviously I've had two ileostomies. But I would say my first one was. As Covid hit, so it was an incredibly difficult position to be in, and I was in hospital recovering from my surgery when we went into lockdown, so that it was just panic stations everywhere.
But what, one thing they did I would say forget is that I'd just had major surgery and I needed that support. So I had been shown how to change my stoma bag once before I was sent home and I had no idea what I was dealing with. I wasn't even shown how to cut the base plate. I didn't know anything so it was my husband who actually used to how to change a stoma bag and he changed my first one because at the time as well I couldn't physically look down at my body I didn't know what to do so I know that's a unique situation but at the same time I've heard the stories over and over where they haven't had as much support from stoma nurses.
So it is crucial to have that initial support whilst in hospital and post-op, because for my second, when they redid my ileostomy and turned it into an end ileostomy, it was a completely different experience. They were there for me 24/7. I was just in a phone call or an email away from them, but like Sophie said, I definitely think it should be seven days a week because when you come into issues.
Like recently, I've just been in hospital with sepsis and they've never seen a patient with a urostomy before. So it was a bit like they had no idea what was normal and what wasn't for a urostomy. So I'd say education across the board regards to different types of stomas and why people have stomas.
Because I think I come up against that quite a lot with stoma nurses. They kind of have preempted that I've got something like Crohn's disease or colitis and it's like, well, no, actually mine's due to endometriosis. So it's just having that understanding with stoma nurses, I think, but that first few months post op is crucial.
So it's to be there be supportive and to listen to patients because they're not only going through it physically, but they're going through it psychologically as well.
Hannah: Very much along the lines of what I said, it's that psychological side of things, isn't it? It's that they're very good at fixing the stoma side of things, but actually it's having that psychological support there as well.
Anna: Yeah, definitely.
Hannah: Sarah, I'm going to pick on you again as the, sixteen years of saying it again, but you must have seen many different nurses, had many different sorts of reviews over the years. What would your opinion be?
Sarah: I have to say that I've had an amazing experience with my stoma nurses and actually mine are the Oxford stoma nurses, which is where Jess who asked the question is from.
So I'd like to say to them that they've done an amazing job for me over the sixteen years and I don't see them very often, but I know I can leave a message and they'll get back to me. But I suppose from a little personal niggle. As an irrigator, I would love to see more support in helping colostomates who wish to irrigate, irrigate.
Now, the Oxford team were fantastic and taught me millions of years ago, because I'm old, as you said.
Hannah: I said you're stoma's old, Sarah, not you.
Sarah: But having been around the stoma support world for a while, I've spoken to a lot of stonemanurses and there seems to be there's a couple of elements.
There's time, teaching irrigation takes time, I appreciate that, but there's also, hesitation through lack of confidence and I would absolutely love to see a time when stoma nurses all felt confident to offer irrigation to their patients, because for the people that can irrigate and wish to irrigate, it can be absolutely life changing. So that's my personal soapbox subject, coming at it from my point of view.
Hannah: Absolutely. And I know we've spoken before, haven't we, Sarah, that we're going to be doing your little irrigation road show when either one of us win the lottery, aren't we?
Sarah: Or if somebody wants to fund me then. But yeah, it'll be the lottery, won't it?
Hannah: Yeah. We're becoming a bit more open. We'll accept funding as well now. Yeah. And then also, Ben, again, because it's at that magical time, I'd say, of acceptance point of view, what would you say about the stoma service?
Ben: Again, my experience has been fantastic. Both my community stoma nurse, Claire, a big shout out because she's been brilliant.
And also the stoma nurses in my local hospital in Ipswich as well. They've been fab, but I think we touched on it. It's the emotional mental side of it that I think is probably the most lacking area. I think I was pretty important. Thank you. Lucky, in a sense, my surgery was, well, I say elective, in reality how elective it really was, but I chose to go through it, and so it gave me the time to prep and prepare and mentally get ready for it.
But it still was a challenge coming through the other side, and as linked back to my earlier comment, if I hadn't at that point then started up my Instagram page and had that knowledge of people around me that got me through mentally I think there's a big wider issue in health care and lots of things as well with post covid of this reluctance to reopen support groups, and and I get it from a data protection point of view But there's a reluctance I think with stoma nurses to get you together with other people.
I would love it if when you were given a new stoma nurse that they team you up with another relevant estimate that there's going to be similar demographics to yourself and someone that you can bounce off and talk through and then perhaps them setting up their own organising group support sessions where people can get together.
I know there's a few things out there, but certainly in my local area there's not very many options and what they tend to be is a lot of people that are Much older in their seventies and above and whilst i'm sure I could go to that and gain something. It's something that as a younger person, there are different mental and emotional challenges and I think that that side of things could be improved. The stoma nurses themselves are great, but they've not got that personal experience. So to facilitate that would be really good.
Hannah: Yeah, like a buddy scheme almost there. But you see buddy schemes in a lot of other areas in healthcare. So yeah, I absolutely, I can see that being a really good idea. Next question.
Kyle: My name is Kyle, I work for one of the stoma nurses from Leighton Hospital. My question is, what can I say to an individual who's going to start irrigation to make them realise that it should be a daily thing and not something that they can choose?
Hannah: So that was Kyle from Leighton Hospital and he wanted to know about what he could say to an individual who's starting irrigation to make them realise they need to do it daily and not just pick and choose.
Talking about picking, Sarah, I feel like I am picking on you because as the irrigator in the room, I'm going to ask you.
Sarah: So I guess I would say to an individual who's starting irrigation, Stick at it with a routine to start with. I think if you have success with irrigation, I'd be surprised if you want to stop, because the freedom it gives you to be in charge of your stoma is liberating.
But once you have a routine, you can make it work for you. So I've got a very fast transit, but even I can get thirty six hours out of irrigation. So I might irrigate. I generally irrigate in the evenings, but at the weekend I'll irrigate on a Friday, skip Saturday night and do Sunday morning. If I'm going out for dinner, I'll irrigate in the afternoon.
If I've got a big day, I'll irrigate in the morning. So to start with I totally get that stoma nurses say, stick to a routine to get established. And like I said, I think you'll want to keep doing it because of the freedom you get, but then you do have the ability to to make it work for you.
Hannah: Yeah. And again, I think that's what you say most people are after, by having that irrigation there. So by sticking with it, you can get yourself that freedom. I'm also gonna ask you on something on that, Sammy, 'cause I know obviously you've got a urostomy so you don't irrigate. You actually do bowel irrigation, don't you? Do you have to do that regularly as well?
Sammy: Yeah, so I was told initially that I had to do it daily. Me thinking I knew better at the start, I didn't. Just because naturally I wouldn't go that regularly anyway, so in my own head it didn't make much sense. And I hate it, so I wasn't. But what I have learned on the back of that, after a slap on the wrist, is that now that I am using it more regularly, it's a quicker process, it's not as painful, like, I am finding there's just more regularity, I guess.
I'm still struggling with it in ways,, it was so daunting because I never really got that initial, no one really showed me how to do it. I got the irrigation kit in the post. So that was tough and I had to learn, learn how to do it by reading the instruction booklet. So that's been a bit of a challenge. So yeah, I am struggling with it, but I'm definitely better now than I was at the beginning.
Sarah: That's interesting in that with colostum irrigation, you are not allowed to do it by yourself until you've had training yet, it seems obviously rectal irrigation, you just have to give it a go.
Hannah: I'm surprised as well, like Sarah, that you go stick it in the post, give it a whirl.
Sammy: No, honestly, so was I. I spoke to the GP and it had gone back and forth from consultants, and in the end it was like, the criteria was you had to have been on so many lactatives, it not worked, and then one day I just got a big box in the post, and it was the irrigation kit, and they was like, once a day, there you go.
So, it was definitely difficult, I mean, I just wanted to return it when it arrived, to be honest, but, you gotta do what you gotta do, haven't you? And like I say, I've got a lot better now, but I've also had some help as an inpatient as well, because I've never really had anybody teach me, so as much as I've learned from the instruction manual, I've never had anybody say that's actually not how you should actually be doing that so I've had that clarity, clarity actually this last few weeks, which is great.
Hannah: Oh good, and I'm also going to ask you on that Anna, because I believe that you've previously irrigated as well, haven't you?
Anna: Yeah, so I did bowel irrigation, pre stoma for about three years, because my bowel basically started to shut down. The muscles just wasn't functioning because I had a sacral nerve stimulator put in to try and help with the function and it failed after six months.
I went through all sorts, and in the end the one that worked for me the best was the Quifora irrigation system. Again, similar to Sammy, I wasn't shown how to do it, I was just told by my bowel nurse, by my specialist bowel nurse who looked after me from my sacral nerve simulator how to do it, but she didn't show me how to do it, so obviously it comes, you get it prescribed and it, you look at it and you think, oh my god, how am I going to deal with this? But it did make a difference initially, very similar, to tell me again, not being able to, they're saying for you to do it every day and you look at it and you think, I can't face this every day because it's just too traumatic.
But actually once you get going and into a routine with it, it's not that bad. But for me, unfortunately, more and more, it just wasn't working. Nothing was coming out. So I was pumping all the stuff in and nothing was coming out. So it didn't work well for me. So in the end, I had to have irrigation done in theater every three weeks which was managed by the hospital, but for a few years I did bowel irrigation and I definitely would recommend anybody to give it a go. But you have to jump in to it. You have to commit to it. And make a routine that works for you alongside your medical professionals. But it is getting over that initial fear of using it because I definitely had that fear.
And it was similar to be when I used to self catheterize before I had indwelling catheters. It's just the unknown that you don't, you have no idea. And also as a young person, cause I started irrigation when I was twenty four. So you have that on your shoulders where you think, I'm too young to be going through this. So you try and rebel against it. That never works. So I definitely get into a routine and that and give it a go. That's all you can do.
Hannah: Coloplast Professional offers a lot of educational material for specialists, nurses and healthcare professionals. Visit coloplastprofessional.co.uk to find out more.
I'm going to play the next two questions together because they are quite a similar subject.
Richie: Hi, it's Richie from Heartlands Hospital. My question to patient release, what would be advice to another patient on how to improve sexual relationship to their partner, husband or wife, especially having a stoma.
Michelle: Hi, I’m Michelle from Watson Park Hospital. My question would be, how did you think about your stoma with a new partner?
Hannah: So that was Richie from Heartlands, one of my old colleagues actually, so hello Ritchie wanting to know what would you advise to a patient on how to improve your sex relationships with your partner following stoma formation. And then we also had Michelle from Wexham wanting to know how did you bring up your stoma with a new partner.
It was only going to be a matter of time before sex got brought into the conversation with nurses guys. So I'm going to go first of all, I'd like to ask you, Sammy, first of all, again, because you're quite new into this and I know you're newly married as well. How did you bring things up? How did things go when you first came out?
Sammy: Yeah, I mean, I've been with my husband now since I was fourteen years old. So we've been through a lot of life changes together. This though, I didn't think it was gonna actually, but it did. And I think it was more the unknown. It was just more, I don't even know if it was a worry. It's just the unknown of what would change in that aspect if I had to do anything different, just talk about it.
And I remember, for him as well, it's, I think a key thing to remember is it's not just all new for me, it's him also. So, speaking about it and just being really open and, We had so many conversations, and what, it really wasn't all that different. But I'd made it into my head, like this thing that it was going to be absolutely crazy, and it's so different than anything else, and it really wasn't.
Like I say, I'm five months down the road now of my surgery, and yeah, it's really not too different at all. It was more just me worrying far too much about it, and it's just communication. I'd say that's the biggest thing to remember.
Hannah: Really good advice. It's going back to what we've said it's that psychological support side of things, isn't it, that actually the thinking about it is far worse than the actual doing it itself.
So I'm going to come to you with that one as well, Anna, obviously from a unique position of having two stomas there. How did you approach things from that point?
Anna: In all honesty, I avoided it, like the plague, to be honest. So I've been with my husband since, well, how many years now? Twelve years. So he's been with it, with me through it all, and I've had sixteen operations now because of the condition I've got.
And I think when you suffer with a condition like endometriosis anyway, sex is difficult because you get a lot of pelvic pain, pain during sex, pain after sex, so Sex is a difficult subject to broach, whether you're with a new partner or whether you've been with somebody for years. I think you feel that you're a certain age and that you should be having sex all the time and that you shouldn't be having any problems.
And then you have conditions like this that impact it all of the time. But I would say my biggest thing is to have open conversation, and to be completely honest. and not feel forced into it, a partner who understands, is worth their weight in gold. I think if somebody isn't going to understand that what you've gone through is a lot, and that you just need the time to get your head around it almost, I think they're not worth it.
Your shouldn't have to settle for somebody who's not gonna understand your position. But the confidence comes with time. And I think mine's been knocked, uh, a few times. I think it took probably, I would say about twelve months after my first stoma, and then by then I was having another surgery.
And my urostomy, I'm only four months post op, five months post op my urostomy, so I'm still early days again. So I think it's take your time and have open conversation and be completely honest with how you're feeling. Because if they love you, they'll understand.
Hannah: Yeah. Oh, thank you, Anna. And then, I'm also going to ask Sophie, because I know this is something you've brought up on social media and asked a few opinions about it, so I'm dying to hear what people have said about this.
Sophie: Yeah, so, do you know what, the main one was what, I echo both the girls, it's communication's key. It's just making sure that you both talk to one another, and like both the girls said again, Is you take into account each other's feelings. It's not only yours, it's how they're feeling too, because it's, I don't want to put it like that, but it's alien to them as well.
It's a whole new situation for them to learn how to explore and yeah. And they might just, your partner might be just as nervous or as anxious as you are. But if you don't have that communication, you're never going to know and you're never going to get past those initial hurdles. And then, there was a lot of people saying, it's about feeling confident in yourself.
If you lack that confidence in yourself, it's, it's going to affect everything. And the recommendations on that side of things were things like, just make sure, you know, you've got a new bag on at the time. So you're not worrying about it being an older bag, it's going to leak anything like that.
Some nice underwear. So crotchless knickers did get mentioned. I know it's not something to laugh about, but no, that was something that was mentioned, support belts. And a lot of the girls came back to me saying, you can get like really pretty support bands, like little lacy ones, I think you just wear and it will hold everything in place.
And you'll feel that little bit more, not just confident, but a little bit more sexier as well at the time. And then bringing it up to a new partner. I think the main thing for that is never be ashamed. You are who you are, stoma or not. So do not be ashamed of your condition. And if someone can't accept you for that, show them the door because they're not worth it.
They're really not. But again, I think it's about you just broach the subject, start the conversation and see how it flows. I think that's the best way. And quite a lot of people came back to me saying, they've never known where to go like with a first date. So one girl said to me she actually put it on her dating profile.
So it was out there before she even met people another person said that they on first date would mention that they had been unwell for some time. They navigated the conversation to see how that went first before they bought up having a stoma and actually went so much better than they expected.
But yeah, it's just about building connections with people. And I think finding that trust in being able to talk to someone about it. And I think that's a big, it's a big factor. If you can't talk about these things, then it's maybe if they don't like it, then just, like I said, show them the door. It's their loss, not yours.
Hannah: Absolutely. And it's all going back to that communication again, isn't it? Even if you're communicating, telling them where to go at that point.
Anna: Exactly.
Sophie: Exactly that. But communication was definitely a big, big one in this subject.
Hannah: So this next question was actually received via email, so I haven't got a click to play here.
And the question was, what are your top tips for managing your stoma in a wheelchair? What things should nurses be considering? So Sammy, I'm going to ask you this one.
Sammy: Yeah, I had a really great experience with that actually. I didn't know if I was gonna because, I don't know, I just didn't know how much that would affect the stoma itself and the placement.
But I know when I had my pre op appointment, it was straight away as soon as I wheeled in it was discussed, how it would affect the placement and things like that. And I remember once we started having a laugh and everything, we took the party into the bathroom and she placed the bag on my tummy and to see, really, if I could empty the bag in the toilet from my chair, which I thought was really thoughtful.
So, things like that, that I'd actually not even thought about. So, it was the placement. I know when I first went in, they said, generally, stomas are, well, the stoma that I have was placed under your belly button. Whereas, mine's actually a couple of inches above my belly button. It's quite high. For that really, mainly that reason, so that it's more accessible for me as a seated position. So yeah, I had a really unexpected but great situation with that.
Hannah: Really good. So it is that planning and spending that time with your nurse. It's all about the pre planning then from what you're saying there to get that, that good sighting, that good positioning. And then that just made your life so much easier from that point.
Sammy: Absolutely, I think it's obviously the most important thing for everybody. You've got to work out where it sits on your belly and it's got to be accessible for everyone. It's just a little bit different when you are seated all the time and you do have it sat there. It was where it's going to be under my waistband or not.
And could I empty it seated or not and they also showed me some coloplast nightbags that are actually made for wheelchair users. So that's great if I'm out and about. Not that the other ones don't work, but they're just designed specifically for being in a chair. So when I plug that into my erostomy, if I'm going out for a longer day and don't want to keep emptying, the erostomy nightbags are fab.
Hannah: Thank you. And then we've got the next question.
Maddie: Hi, my name is Maddie and I'm a stoma Care Nurse at the Queen Elizabeth Hospital in Birmingham. So my question is for patients who have two stomas that they have to manage, just really talking around the practicalities of how, how do you manage with two stomas at any one time? Thank you.
Hannah: So this one came from Maddie White at the QE in Birmingham. I just want to say hello to Maddie and congratulations. Maddie won the Chairperson's Award at ASCN. And also from a personal point of view, Maddy was actually one of my stoma nurses when I had my stoma. So thank you very much to Maddy as well. Well, from that, and she wanted to know about how you're managing with two stomas at any one time.
So I think we all know where this question is going, don't we? So yeah, Anna, you're on.
Anna: So I would say you have to be a bit of an octopus. You need like multiple. You need to be good, like, multitasking with both hands. It definitely took me a minute to get used to changing both bags. So my urostomy sits on my left side.
So normally it sits on the right, but my ileostomy is that side. So it's had to go on the left. And my surgeon was great in measuring up to make sure that they sit at the same level and also to try and space them enough so my bags didn't overlap because that was my biggest worry was I've spoken to people with two stomas and they said it's a nightmare when the bags overlap because if one leaks, then you have to change both.
Then it's just that cycle. So one thing I definitely would say, if you are going in and having, whether you've got one already or you're going into surgery and needing two stomas straight away is, discuss that with your surgeon to see if it's an option, because that's something I definitely prepped beforehand.
But regards to managing it day to day, It's actually been quite straightforward with my urostomy, because I think because I'd had my ileostomy for two years prior, I knew the way to deal with my stoma. So even though it's urine ompared to having obviously bowel movements, it was definitely that much easier going into the surgery, coming out, having to change bags.
I wasn't scared of changing my bag, looking at my stoma, because that's something I definitely feared on my first surgery was looking down and seeing. cause I don't know if any any of you relate, but seeing your stoma move is the strangest thing ever. And my first stoma actually sunk under the skin, so it never behaved.
So when I had my urostomy, my biggest thing was make sure I've got. some spout to it, to make sure that I wouldn't have the issues I had prior. And it is much smaller than my ileostomy, but it's easy to manage, it doesn't leak. Which again, was one of my biggest fears, was having it leaking.
But, again, goes back to having a good stoma nurse, and making sure you keep that communication if anything kind of worries you, regards to having two. Or one even, I think your, every question is valid, there's no stupid question. So for me, because they've used part of the small bowel for my urostomy, I've noticed a huge amount of passing more mucus in my back passage since having two stomas, which I didn't know was relatively normal after you've had two stomas.
So it's just asking those questions so you don't sit in silence and feel scared that something else is going wrong. But yeah, day to day, I'm like early days, so I would say it's not as frightening as you think. But you definitely need to get used to multitasking, holding everything.
I always change my urostomy first and then my ileostomy. Because I find your urostomy, you cannot know when it's going to empty. So, you, basically, the way I describe it is, It's a bit like when you've got a baby, and you open the nappy, and they wee everywhere. It's a bit like that. You take your bag off, and it just squirts everywhere.
It doesn't, you have no idea when it's gonna do it. Whereas your ileostomy, you can have an idea of when that's gonna work. So, Yeah, I would just say it's just a learning curve, but it's not as bad as you think.
Hannah: Thank you, Anna. And then believe it. We've only got one more question left, so here we go.
Mamta: Hi, I'm Mamta, I’m one of the stoma care nurses from Charing Cross Hospital. And what I’d like to ask the patient is, what words could you give me, or tell me how to mentally accept having a stoma being part of your body and a part of your life, please.
Hannah: And that was a lovely Mamta from London. And she wanted to know what words could she say to a patient to help them mentally accept their stoma? So I am going to ask all of you that. So I'm going to start with you, Sarah. What would be your little top tip?
Sarah: I would say, You're not alone. There is support out there in many shapes, forms, different ways to suit anybody. There are support groups, there are Facebook groups, there's Instagram, TikTok, Twitter, the support charities. I felt like a freak. Was I freak or unique? Not at all.
There was loads of people out there. And friends, family. are fantastic, can be fantastic, but there's nothing like talking to somebody who's walked in your shoes. It can just make such a difference. So you are not alone. There is support out there. Look for it and take it.
Hannah: Thanks Sarah. Sammy?
Sammy: I guess for me, someone maybe just explaining that, not that I believed it at the start, I'm not going to lie, but that it does get easier and it does get better.
I remember waking up from that surgery and I didn't want to look at it. And they're telling me that one day soon I'm going to be, it's going to be second nature. I'm going to think nothing of it. I'm going to change the bag without a care in the world. And I was looking at her like, that's absolutely not going to happen.
But weeks and months down the line, and you do, I can watch TV and change my bag and it's fine. But in that moment, I just couldn't comprehend how that could become normal.
Hannah: Yeah. Sophie?
Sophie: Oh, so I would say take each day as it comes. You will soon learn to adjust and accept your stoma.
It does not mean you've got to love your stoma. I know there's loads of people out there that rave how much they love their stomas. You don't need to. It's just about acceptance. And yeah, it's just recognising that you're gonna have those highs and lows and the emotions will be up and down. And it's ranging from the reality to denial to acceptance.
But we all progress at different stages. So yeah, it's just taking each day as it comes.
Hannah: Lovely. And Ben?
Ben: There's a difference, I think, between having a positive body image and an acceptance. And I think the easier one of the two is the body image. You can kind of get over that pretty quickly, but the acceptance is a longer ride.
And it is a roller coaster. And, I'd say I'm pretty positive on my Instagram page in particular, but it's not always the case. So it's a roller coaster, there's ups and downs, like Sophie said. And I think once I realised that actually that's normal, the mental acceptance and the ability to move on and just live life was much easier from that point.
So yeah, just know that sometimes it will be tough, but it doesn't mean it's always going to be that way, and having those highs and lows is totally normal.
Hannah: Brilliant. Thank you, Ben. And then, Anna?
Anna: I would say, just be patient with yourself, more than ever. It's a difficult thing to go through and there's no time limit on when you should accept it.
I've definitely gone on a rollercoaster from feeling positive in a sense that it's made my pain much better, but then the reality of living with it long term I really struggled with. But the one thing that really helped me accept it was that it saved my life, that I wouldn't be here if I didn't have both my stomas.
And for that I'll forever be grateful for them both because it's given me the time with my daughter. So I think it's trying to see the positive in it. And that doesn't mean that you'll be one hundred percent positive all the time because I'm not there's days I completely despair with it. But it's allowing yourself to feel that and to, every emotion is completely valid.
But the one thing is to know that your life doesn't end when you have a stoma. For me, it completely kind of did a one eighty and it's given me much more of my life back. I spend a lot less time in hospital, so it is seeing that silver lining. And it's okay to be angry, it's okay to be sad. It's just to know it's, the part of going through it, because I definitely grieved the body I used to have.
I used to look in the mirror and think, after my stomas, and think your self confidence goes through a huge rollercoaster of emotions. You definitely question everything. But it's okay to feel that, and I think that's the biggest thing. But it's learning to love your new body, for me, it's definitely being thankful for it, for giving me my life back.
Hannah: Thank you, and thank you all so much for being so open with your answers. You've been absolutely brilliant. As I said, my dream team. Thank you all so much, and thank you for everyone who gave me the questions at ASCN. Really hope we've given you some good answers and given everyone some food for thought there. And we'll look forward to seeing everybody and the next time. Thank you for listening. To see more of the wide variety of education we offer, please visit colourplusprofessional.co.uk. See you next time.
Narrator: Stoma and Continence Conversations is a Vibrant Sound Media production for Coloplast Professional.