S4E8 Steve Cartmail Intro –Welcome to Stoma and Continence Conversations from Coloplast Professional. I'm Paul, Ostomy Care Education Manager here at Coloplast. As a specialist nurse, I know that stoma and bowel and bladder issues impact the lives of those that you care for. This podcast is here to support your educational needs and help you in supporting your patients. You'll hear from fellow healthcare professionals and experts by experience and discuss the latest hot topics in the world of stoma, continence care and specialist practice. This time… Anything to do with your eyes, your bottom, or your penis, it scares the hell outta you! I'm Stephen. I'm an old boy, I still wanna look good. When I had my operation and I woke up with this new attachment to my tummy, I felt like a brand new person. I know that I was really highly medicated on morphine and all sorts, but I felt like a brand new person! Paul - This time I've got the privilege of having a very special guest, and I've known him for a number of years. But before I introduce our special guest, I would just like to say - hi, Hannah. How are you? Hannah - I'm good, Paul. How are you? Paul - I'm not too bad. I'm not too bad, thank you. I'm trying my hardest not to rush this introduction, but I am just so excited. I really want to get our special guest on. So without any further ado, Steve, are you there, Steve? Steve - Hi Paul! Paul - Thank you so much for joining us on this podcast. As I said in my introduction, I've known you for a number of years now. But just in case any of the listeners haven't seen Steve or haven't heard of Steve - do you wanna give everybody just a brief introduction, tell everybody who you are and your story with the stoma? Steve - Yeah. I'm Steve, on Instagram, aka Bagdaddy Steve. Proud ostomy owner from... I've had my ostomy now since 2015. I was diagnosed with IBD in 2008, about the early part of 2008. Just before I was diagnosed, I was having accidents, I was finding lots of blood in my boxer shorts and I was worried that I had cancer, that all sorts was going wrong. So it was about three months before I actually got a diagnosis. And when they said it was more than likely IBD, you know, inflammatory bowel disease, they didn't know which sort it was. They sent me the test, when he come back saying, you've got ulcerative colitis. I was kind of really pleased that it wasn't cancer or anything untoward. And that was my, the start of my understanding what this was all about. Now, my story, like I said… From 2008 till 2013, I was on all the usual medication, the Prednisolone steroids. I can't even think of the name of the drugs that I was on, but they were, they were all controlling my issues basically until up until about 2013. Then my sort of inflammation in my bowel really kicked up and ramped up a bit. And then they tried me on the biological medication. They basically was saying, look, we're gonna have to use all these meds, try them. Some were working, some wasn't. And in the end, I didn't even hear about a bag, to be honest. It wasn't until that I went in, in 2015 in absolute agony having lost lots of blood and basically at death’s door, that's how I felt. I felt there was no point in me carrying on, you know, there was no quality to my life at all, I was getting worse and worse. And it was, I think when the surgeon saw me in this predicament, I mean, I was like a 48, you know, grown man crying, you know, he must have thought, nah, this guy's had enough! And then he said, well, right I'm gonna remove your bowel the following day, you know, and I was just thankful that something was being done. But I almost felt like that having a bag was always portrayed as the last case scenario. After having tried all the medications, the very final stage, it's kind of like your body hasn't responded to the medication, so it kind of put a negative kilt on having a bag. Now, for me, I didn't really know much about having a bag. So, you know, that night before my operation, I spent a lot of time writing on social media on a few of the IBD help sites and stuff. And, you know, by the morning I kind of knew everything there was to know about having a bag! The only thing I was worried about was having the injection in the back. In the end, it was a learner doctor that did the epidural so I was petrified! So the next day when I had my operation and I woke up with this new attachment to my tummy, I felt like a brand new person. I know that I was really highly medicated on morphine and all sorts, but I felt like a brand new person almost like a cancer had been lifted, even though I didn't have cancer. It's just really about me getting my head around this new way of life for myself. I did lots of things. There was a few ups and downs, and I had a blood clot on my lung, you know, which put me back in hospital. But moving down the line, you know, lots of things changed and my new way of life was brilliant. I'd go to work on a Monday and everyone would be all grrrr, it’s Monday isn't it, you know, not very happy. And I was like living this brand new life that I've been given. I'm sort of mid age as well, you know, it just, I felt fantastic. So then I did kind of, I did a few things in order to make me feel like the old Steve. I did a calendar shoot, a boxing match, you know, just things which made me take off my top, show my bag and earn some money for charity in the process. But to be fair, the charity was just a little like a byproduct of what I was doing. I was doing this for me to get my mojo back. So anything bowel related comes up, I was putting my name down. I was, you know, doing underwear shoot, catwalks, the lot! It was just, you know, I put my hands out and things was just coming to me! It was a case of embrace, embrace, embrace, and all the while my mojo was coming back, I just felt brilliant. So therefore the bag for me, it's never been an issue. Having my moobs, that's the issue! That is what stops me going swimming, not the bags! You know what I mean! It's kinda like, I'm 53 now and I think the second covid lockdown, I think when they started to do like breakfast for half price and it's Thursday and you already had three breakfasts in town. You know, I think that for me it's, the bag's never been a negative thing. I've had two parastomal hernias. The first one was, well I had my ostomy in 2015. I had my first parastomal hernia in 2018. I think everyone's warned about the dangers of parastomal hernias and how they can occur, but I don't think you really take it seriously until you've witnessed one or seen one. You know, I've seen my friends with them and horrific unsightly things. Mine was, it was like a boob. It was just like a big boob on my tummy. Everything that I wore stuck out. It was unsightly. The first one wasn't that painful. It just looked horrible. This was from, I think I'd eaten a couple of big bags of nuts and hadn't drunk in between and I had a blockage. I'm not sure whether I had a sneezing fit the day after or a coughing fit, but I felt the actual tear when they shot through in one go! And, you know, I knew something was amiss. I knew that I'd learnt the error of my way, I still eat nuts but not in the sort of the amount that I’d used to. And so I had my repair in, that was in 2018 and also had a proctectomy, which is, you know, removal of the rectum. And cause it was no longer used, I was warned of the risk of cancer with living an organ that's no longer used anymore. So I literally, I won't be smuggling anything into jail! To be fair, right after that operation, my parastomal hernia, my protectomy, my bump operation healed within four maybe five weeks tops, you know, and I was really lucky there cause I know lots of people that have suffered for years and still are, and they're having to have them vacuum packed. And, you know, I had more trouble with issues with my hernia cause obviously it was an open wound all the way down my stomach. I was having loads of infections and, and bits that just weren't healing, except unfortunately that parastomal hernia repair lasted about a month. They'd already warned me, the hospital had warned me that the first operation, we kind of do it as, it's not an issue, but the second one and after that, they're gonna try and talk me out of it. It's more about quality of life than anything else. But, it's really painful, the second one, and to be fair, even if it wasn't, I would've said it was because I really needed it gone. It was an unsightly huge lump on the side of my tummy. All I could see was that… you know, I could see about an inch of my right foot, and the whole of my left foot. So, you know, and I have a belly, it was just, it was horrible. I couldn't wear no clothes. Everything was black in my wardrobe, but I had to wait about 12 months for this operation. You know, this thing just grew and grew. Luckily there was a surgeon from my hospital in Good Hope in Sutton Coldfield that decided he's gonna do it a different way, where he layers the pig mesh. You kind of layer the over it itself, where the join was and repaired it with keyhole with about 13, 14 titanium staples, almost like wallpapered it up onto my tummy. And that's how he explained it to me. And if you could see my hand now, it's doing a wallpapering thing. It's like a sweeping up... Now, my tummy was really swollen from that operation and the fact that it had staples in titanium staples, the healing process, it just took months and months, but it was really painful. Every time my stomach was shrinking, it felt like cats clawing inside. It was really uncomfortable, but fingers crossed, that's held tight. I advocate a lot for hernia wear. For the vest tops, for the boxers. You know, the extra band, obviously you've gotta engage your core. Whenever you're training, you know, you gotta strengthen your core. You gotta try and do anything you can in order to protect yourself. But clothing does help as well. You can't rely on it. But it is very rarely, I never go to the gym unless I've got my stuff on, you know. And even if I'm going out, you know, I've normally got something on that will flatten it up. Because you know, I wanna, even though I'm an old boy, I still wanna look good! Hannah - Just thinking about, you've been talking about these issues that, oh I mean sound horrific! All the backwards and forwards you've had with your hernias. How did that affect your actual stoma or did it affect your stoma function, the products you were using? How did you cope from that side? Obviously, you've mentioned the clothing side of things, but did it affect your functionality of your stoma and like say, did you experience more leakages because of it? Steve - Mainly my issues were blockages. They were horrific. I mean, but blockage is uncomfortable anyway, but you kind of always, I kind of always expect it to come out eventually. I mean, I've been in the bathroom, you know, I've been eating lasagne and peas and the bags off and massaging it, I've had no movement for like 10, 12 hours. And you're crouching, you're doing squats in the shower, and then all of a sudden , it's like a shotgun fire and peas are flying up the wall. Just, it's ridiculous, you know! It's kinda, it's really strange, but I don't really eat peas anymore. It's a weird thing, but you have to have a stoma to understand that really. The blockages were terrible. So it really, you’re kind of aware that you need to chew more, you need to drink in between, you need to definitely stop choosing foods that don't agree with you. Paul - When you were having your counseling, I should ask, first of all, did you have counseling before your first hernia repair? And if you did, did they cover everything that you felt, um, should have been covered? Steve - I wouldn't have said, called it counseling Paul. It was kind of the surgeon saying this, it was very roundabout way. It wasn't, it didn't seem that important at the time, the way he explained it to me. He was a fantastic surgeon. But sometimes, you know, I dunno, I kind of, I would've preferred to have heard something like that from another ostomate. For instance, you know, how well I felt after having my initial ostomy. I went down all the route of having all the medication, and if I'd had known how well I felt straight after my ostomy, I wouldn't have suffered for two years. I really wouldn't. I'd have opted an elective and had it done. Now in the end, you know, they said there's no way of resewing it back, reattaching it back to the cuff that they leave from your rectum. There was no way, it was like sausage skin, they said, but I'd done my homework. I'd already decided that this ostomy my life saver, and I loved it, so I wasn't gonna have a reversal anyway. So when they said, you know, there's no way you can have a reversal. I wasn't going to anyway, I was quite happy with it. But I kind of think if I'd have had someone like myself going to speak to me and saying, right, and what's your quality of life right now, this is how I felt after I had my ostomy. Now I know that not everyone's the same, and a lot of people struggle with it physically and mentally. But, for myself just hearing someone talking about it in a more positive tilt that would've made me not suffer them last two years were horrific. I was going through a really tough breakup and also living this secretly, basically. But then again, you know, things happen for a reason and I'm not one to hold grudges on anything. So, everything happens in the end for the reason. So, but I definitely would've, this is why it's passionate for me to let people know, you know, that it's not the end of the world and, and things will go better. My life is so much better now than ever has been. Paul: I’m lucky enough to follow Steve on social media and all his social media is in the podcast description. But Steve, one of the things kind of, you've brought up. Again, I see it on your social media and that's, you know, you are a massive advocate of communication and I'd like to just kind of go back a little to the start of your story, if that's okay? And you were saying about the symptoms that you were having. Yeah. You were saying you were getting blood in your boxers and you had this fear that it was gonna be cancerous, and you're gonna have a cancer diagnosis. And we talked to a lot of people and luckily enough I've had the privilege of talking to another ambassador called Chris, and he said something very, very similar. And it was that thing. Almost not quite denial, but not wanting to face the potential to have a really life changing diagnosis. I know I'm kind of pre-empting this question, but… If you were to talk to anybody else, another, especially men, cause men are, we are nightmares when it comes to men, to even go into the GP! Have you got a message that you'd kind of like to say to people about, you know, not hiding? Steve - Yeah I mean, I think when it comes to any men, I'm talking about myself now, anything to do with your eyes, your bottom or your penis, it's scares the hell outta you! And it's, everything else is on the table as far as I'm concerned, but them three things petrifies me! And it was three months before I literally had a cough, and I followed through, and I've gone to change my boxers and they were just full of blood. And I thought, oh, that's not right. You know, and I've had piles before, but it wasn't that, just a worry of not knowing, but then being scared to go to the doctors. I wasn't in a, you know, my relationship, I'm not gonna go into the relationship. But, we wasn't close. So this was all kept in my head and it just got worse and worse until the fear of having cancer had overrode all the thoughts in my head, you know. And I went there and when he said, you know, and he put his finger up my bum, which is a bit of a shock! I was kind of so pleased that he didn't come back with anything really more sinister. I think really, I mean, every guy I speak to and I have lots of people that will come to me, you know, cause they've got issues with their bowel or they're having, their poos changed or, and it's nice because they're not, it's certainly something that a lot of people don't wanna talk about because they know that you've been through it and you're not gonna laugh or take the mickey, it's just, it's genuine question, isn't it you know. It's nice to be able to give someone just to, even if you just say, look, you know, just go check it out. I'm not a professional in any way, shape, or form, but if you've got a chance to change it before it gets really bad, then it's gotta be worth a visit, isn't it? You know, it doesn't matter how scared you are of the doctors. I wish I'd have gone earlier. I do wish I'd have gone earlier. I think it'd already passed, but, you know, whatever it is, you know, it happened, it happened. I can't change nothing… Hannah - I always call it the poo taboo. Steve - It is! Hannah - It's the poo taboo. Nobody wants to talk about it! Steve – Oh, it's different in my mates, everyone's talking about it now! Hannah - You’ve broken the taboo! Paul - Absolutely. You broke the poo taboo! And I think it is such an important taboo that we do actually break as well and bring things like altered bowel habits out into the open, so to speak. Going back to the hernia and the hernia repair. It's a little bit like reversal. I know that, you know, even if you were like, like you said Steve, if you were offered a reversal, you wouldn't have gone for it. But I think for a hernia repair, it isn't just a passing thing that you can, you know, oh, yep, you can have a hernia repair. Because just like yourself, you can have, there are so many potential complications and you know, I know that the nurses listening are gonna be going, yep, we know these complications. But I think it's that thing of bringing the hernia and the importance of that communication with the individual before the actual hernia takes place. And I know I'd had really, really long conversation with you, didn't I, Steve about hernias, and I'm sure Hannah has seen it as well. And I'd like to kind of get her take on this as well. And it's the amount of times I'd be walking through the wards and suddenly I'd see a patient, I'd be going, what are you doing in? And they'd be like, I've just had my hernia repair! And for me it was just like, I almost felt that I let people down because I didn't feel that I'd given that individual the support and that communication before they had the hernia repair. And I think there's so many potential problems that could occur. It's having that open discussion. Steve - It is an open discussion, but what you gotta remember is, you are giving the information to someone that's just had an ostomy. So they've already got a lot of stuff in their brain to deal with. You kind of, I kind of shut down through a lot of information that came after that. The hernia was just another word. It didn't really mean that much. I was dealing with having an ostomy, and it wasn't until I had one, I realised the uncomfortableness and yet most the surgeons and the doctors that I was with, they were like, well, we are not gonna repair it. It was really about your quality of life. You know, I know people have had hernias for years and, and they haven't repaired it. Because they're getting on with life. I was almost, I think I was told by a doctor that we try to talk people out of having the repairs and I thought, wow, they're not gonna talk me out of it! Hannah - I actually agree with what you're saying.. that I think when you are in hospital after your operation, there is so much information thrown at you that you are trying to absorb and pick up, and it's so much to take on board. And I also agree with what you're saying about the hernia, I know they're looking at the generalised, quality of life. If it's not causing you any pain or function, but it is an appearance thing. I mean, I had a patient once who he'd got a a hernia and he was actually stopped in the supermarket cause security thought he was smuggling something out the supermarket. So he had that horrific embarrassment of being stopped in a full supermarket by security because they actually thought he was smuggling something out. And I dunno how that can be considered not affecting your quality of life!? But he did show, not just the security guard, but a good amount of the supermarket that I shall not mention, all got a little look, shall we say…! Steve – Right! I mean, that's terrible. The fact that you feel that you have to… I got accused in a nightclub, I got accused of doing drugs because I was facing the opposite way, emptying my bag in a toilet, in a cubical! Three bouncers came into the room. They must have thought I was a big lad, cause three of them! They'd emptied the toilets from the people that were in there, so all these lads were waiting outside. Now I've had a few drinks and he's saying, we know what you're up to in there. And I was like, what!? And I've come out and washed my hands and he's saying that he basically thought I was doing drugs in there and like a western, I've lifted my t-shirt up like a western, like I'll show my gun and just showed him my bag and he went and bought me a drink and apologised for me! Hannah – At least you did get that apology, I suppose? Steve - Well, I posted it online and one of the women who runs a group of doormen, well they're called supervisors now. She was saying that all of her door staff are trained now to ask whether you have a medical appliance because you know, you can't just assume that, that people are up to no good. He looked under the door, saw my feet were facing the wrong way, and just put one on one together and thought right then..! I like the way they bought three bouncers into there.. Hannah - Well, you are the Viking Steve! Steve - Oh dear. You have to have a laugh. Life is short! Paul - You do. You do! Hannah - Absolutely. And yeah, you're right there. Life is short. But I think what you've shown us today, Steve, is that, actually having a stoma is the beginning of that life. Steve - Oh, it really is! Hannah - And I think that's one thing that, again, we want people to take away from this is that stomas aren't the negative thing that they're potentially perceived to be, and they're actually a really wonderful thing for most people that have them. Steve - It is! I was, I remember my granddad, I remember going to visit my granddad as a child. Now I was brought up in care, so this was way before then. I remember being like about six or seven years old and visiting my grandad. Now he had a bag, but I remember it being full of wee, but obviously it was a urostomy, but it's just being horrified, you know! But no one explained to me what it was and stuff, and, and obviously they were completely see through. You kind of left with the impression with that these are things that happened to old people and they really aren't. I mean, if you're anywhere in the sort of ostomy fraction and you see people on social media, the amount youngsters with them, it's phenomenal! You know, and these are the people that are showing them, which is important. You know, these are the people that are saying - Look, I've got a bag, so what? I'm gonna wear my bikini, I'm gonna go in my shorts, you know. It's really good. It's really positive, cause it shows you, you can live and, you know, and it is a stigma that needs to be broken and it is being broken slowly but surely. Paul - We are breaking that, you know, the stereotype. And I think it's only through people like yourself, Steve who are true positive role models and positive advocates of stomas and stoma formation. Talking about things like parastomal hernias, which I know as we said before is one of your passions. On behalf of Hannah and myself, I'd just like to say thank you so much for joining us on this podcast and promise me you won't be a stranger and you'll join us again another day! Steve - No, absolutely. You know, I'll be there, Paul. Thank you very much. I've really enjoyed it. Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk