S4E2 Kathleen Grassick v1 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… I didn't even know that could be removed. Oh, will my bag stick in the heat and will my bag blow up in the airplane? It was just what I needed. I could have had this operation in my thirties and got my life back, instead, I was in my fifties. The handy hint is don't wear the cushion around your neck! Get a stoma and get a life. Paul - This time I am joined by Kathleen Grassick. She's an established Ostomate and one of the Coloplast ambassadors. And as always, I'm also joined by my friend and colleague in Coloplast Professional Hannah Paterson. Hi Hannah, how are you? Hannah – Hi Paul. Hi Kathleen. Paul - Kathleen, would you like to introduce yourself? Kathleen - Well, I live in Fochabers in the northeast of Scotland. Paul - I'm glad you pronounced that and I didn’t! Kathleen - Sometimes there's a wee bit of problem with that name, but it’s Fochabers! I've had a stoma since 2011, Valentine's Day, a day I'll never forget. So that's coming up 12 years. So I was 53 when I got my stoma after having years and years suffering with Crohn's disease. Paul - One of the things I like to ask people, you know, people with a stoma is how you found your journey up to when you had your stoma formed. You know, because we talk a lot about the communication styles and the wordings that people use and that thing of stoma and stoma formation is worst case scenario, you know, and it's that sort of thing. So how did you find the communication which you received during that pre-op and that build up to your stoma, having your stoma formed? Kathleen - I was diagnosed with Crohn's disease when I was 29. I'd always been a bit good at running to the toilet, but I actually got diagnosed with Crohn's when I was 29, and I was delighted to have a diagnosis. Unfortunately, I didn't realise what a diagnosis of Crohn's disease meant. I just thought now they knew what was wrong, they could make me better. So I spent the next 20, I think maybe 24 years running back and forth to the toilet. Wee, wee, periods of remission where I was okay-ish, but you know, still toilet was my best friend.I knew where all the toilets were. So my whole life was basically where’s a toilet. And so tired. So just so tired. Getting a stoma was never mentioned to me. Never mentioned. I spent so long in hospital. I was at one point I was off sick from my work for nine years, which is incredible when I think about it and still getting a stoma wasn't mentioned still! So they pumped me full of all the drugs, which, you know, you read the side effects and then I decided to stop cause I felt like I was dying anyway. So to take any drugs didn't really matter. And then I got the biological drugs, which is the drip, and that did not work. And then I got the injections into my tummy or my leg and that didn't work. So you really feel you're crawling about and no life at all because where's your toilet? And I can't really eat and I'm so thin and cold and tired. And then one day I had an appointment with the consultant who said, well, this isn't working, I think we need to get an operation. And that was the first I'd heard of it, and I was petrified. So I had an appointment with the colorectal surgeon. Terrified doesn't cover it, Cause I didn't know anyone with a stoma, I didn't really know what it meant. And body image and pain and ugh, really, really terrified! I would've benefited from some counselling I think. But you know, that wasn’t on offer. And like 12 years ago, social media wasn't really a thing. So I felt really alone and terrified. And stoma nurses just kinda took it as ‘yes, well!’ Cause I had an appointment first and I got marked for the stoma, but it was all just so terrifying. I wish that somehow I could change people's perception of that, because I got my surgery, I got keyhole surgery actually. But they also removed my rectum and my anus, which I didn't even know that could be removed until mine was! So I feel I really went in blind. I have to say the recovery was, I think because I was so ill, my recovery felt really slow to me. However, having had my stoma for 12 years, it's the best thing that could have happened to me! And I wish that surgeons would stop seeing it as a last gasp attempt. Cause I could have had this operation in my thirties and got my life back. Instead, I was in my fifties and I got my life back, but I could have had it back so much sooner. I've always lived life as much as I can, but it was restricted with the toilet and now it doesn't really matter where toilets are, I give myself a quick feel and say, no, I'll be okay. So pre stoma was a very painful, exhausting experience, post stoma, i've got a life! Paul - That is an amazingly powerful story and I think we can safely say that for you, the stoma, having the stoma formed was almost life affirming. It gave you your life back, it wasn't this negative event in your life that happened. I'll bring in my friend and colleague, Hannah in at this point as well because, as we all know Hannah was an Ostomate, she's now got an internal pouch and I'm sure that she's gonna be able to share some of those experiences with the being toilet aware, as they say. So, Hannah have you got any kind of mirroring with Kathleen there. Hannah - I mean, the bit that really stuck out for me was what you said about the toilet. And you go from living your life where the nearest toilet is, to all of a sudden you've got that control back. It was, I never thought, not needing to know where a toilet was would be so empowering, and it's something that so many people take for granted that you don't need to know where a toilet is. I mean, you were probably the same as me, Kathleen. If you were going on any sort of journey, you'd have to map out where your service stations might be, or if you were going cross country, if there was a pub on route that you could go to the toilet, anything like that. You were having to plan everything to the most minute of details just for the sake of being able to get to a toilet. Paul - Somebody who hasn't lived that experience is never gonna really, really understand. And talking about those things of not understanding, people who haven't had these lived experiences. We talk a lot about my firsts and at the time of recording, it's about a month before Christmas now. So Kathleen, can you remember some of those first life events that you had with the stoma. So we're talking first Christmas, first birthday, potentially stomaversary? You know, that period where you actually, the time where you did have your stoma formed? Have you got any kind of pivotal moments with your my firsts? Kathleen - I tended to stay close to home pre stoma for obvious reasons. So I had my surgery and I'm struggling to recover. My brother at that time lived in Doha in Qatar. He was going to be 50 the following year and I said, right, this is my goal. I'm coming to Doha in 2012 to celebrate your 50th birthday with you. And I went on my own, on a plane to Doha. It was so amazing, and scary cause I did it on my own. But I would've struggled to, well I couldn't go on a plane before, cause you can't guarantee the queue to the toilet. And therefore nobody's gonna accept me pushing to the front because I really need the toilet! So I went on that plane to Doha on my own to a hot country, you know, and I did think, oh, will my bag stick in the heat, it did! And will, my bag blow up on the airplane, it didn't! It was just what I needed to boost my recovery. The plane seats are maybe a wee bit uncomfortable having had rectal surgery, but you don't put the thing, you know the cushion for your neck – you sit on it! My neck was fine, but my bum was a wee bit, you know… So there’s always a way around everything, and I had a fantastic time in Qatar. Paul - And it's that thing of, you never, as you said, you never would've done that without the stoma. It was your stoma gave you the freedom to live that life. And it's, you know, I'm thinking about it now and I think of all the things that I did, you know, in my thirties and, you know, starting to be in my forties now. And they're pivotal parts of your life, aren't they? You know, those years, you know, we talk a lot about, formative years, but thirties to forties is when you know you're supposed to just kind of be getting on with life, isn't it? You kind of got your place and that sort of thing. So I'm sure for you it must have been quite a concerning and upsetting period during that time. Kathleen - Absolutely. I've got two sons and I feel I wasn't fit physically to be their mother because there was things that I wanted to do and you know, go to football matches. But all the time you think, well I better not eat before I go because there's no toilets at the side of the football pitch. And just so many things cause I was so tired. No, you wanna be out and maybe going up hills or just living life. And I was restricted to the nearest toilet. Paul - I'm sure that there were periods where you were fearful, you know, as you said, you know, going to see your son's football matches. You know, you had that, almost that fear of where's the nearest loo, what condition are they gonna be in, and all those sorts of things. But we also talk a lot about the fear or the worry or the burden of leakage with a stoma. So if you can kind of compare the fear and the worry you had pre-stoma, to the fear and leakage of life with a stoma. So how are you at the moment with that worry and that fear of leakage? Kathleen - I have to say I'm very lucky. You know, it's almost like tempting fate, but I tend not to think about leakage. Most days I forget i've got a stoma you know. My experience of a leakage is that you haven't just got a leakage. You get the warning, you know the itch in the skin and you've generally, you've still got longer with that itch in the skin than pre stoma what I had when I needed the toilet. It's like listening to your body and you feel a wee bit, and you think, right, I need to go to the toilet. But I can still wait a wee while and you just have to carry spares with you. You know, never leave home without your bag with your spares. So it's all about building confidence and taking away any fears. And these, you know, I maybe getting too technical, but flange extenders, if you've got a leakage and you really can't do anything about it, I've got a flange extender, so I just got the loo and stick it on, and that gives me a wee bit extra time to get myself sorted to where maybe it's more convenient to change my bag. Because it's an ileostomy i've got, so, I mean, it does just keep going. So if I have a leak, it's gonna keep going. It's not gonna say, ‘oh, sorry, we've had a wee leak. I'll just stop just now till you get yourself sorted’. But it's still, I find it still so much more manageable then - I need a toilet! Hannah - Kathleen, just thinking about again, pre/post stoma. You were so young when you started having your issues. I think about it, I was a similar age to yourself, so I was sort of mid, late twenties when I was first having issues, I was ulcerative colitis, and for me, it really stopped me going out living that normal 20 year old person's lifestyle. But when I got my stoma that was when I was able to go out, start doing the things I loved again and I've spoken before on podcasts that I’m a keen horse rider, I was able to go back, horse riding, swimming, walking, running. Was there anything sort of activity wise that you, not even necessarily got back to, but found yourself gravitating towards because you had that lifestyle back again? Kathleen - I think it was just going out and be able to go with friends out for a meal cause I never, I didn't like to go out and eat because you didn't get your meal, pre stoma, you don't get your meal finished. You know, you start eating and then you've gotta run to the toilet. And people don't go to the toilet in the middle of their main course, you know, you wait till you've finished eating and then you go, but no, no way. And then being ill for the rest of the day, maybe another couple of days till you got rid of the nice food that you'd had to eat. So I walk my dogs, I've got two dogs, so I can now feel I can go as far as I want to go and walk my dogs, not just round a block because I'll need the toilet before I get back. So it's just, it's just living your life, with a freedom without thinking about your bowel, you know? Or just, this is what I'm going to do today. 2018, I was invited to go to China for a family wedding and I thought ooff China, it was snowing and I was snowed off my work and I thought, I'm going to China now! It was actually my brother, who's married to Chinese lassie and her son was getting married and he put an invite for the whole family and everybody's saying ooohhh, China. So I said, I'm coming to China. And he said, do you wanna think about that? I said, ok, I'll phone again tomorrow. So I phoned the next day and I said, I'm coming to China. And I went to China and I didn't go to the touristy part of China. Well, a few days in Beijing. And then I went on an 18 hour train journey to Mudanjiang in China and I lived with just how Chinese people live and it was, you know, the toilets are very different to toilets that we have here. I must say, being my age, the hardest thing with the squat and toilet is standing up after. It's okay if there's handrails to help you up. Really! You know, I strengthened my thigh muscles, cause you have to go right down because I dunno how you much wanna know about ‘splash back’ and what have you. You need to go right down so you can get back. It was getting back up, you almost needed someone to come with you and say, ‘do you want to gimme a hand up once I'm finished?’ So I think get a stoma and get a life! Hannah - I just wanna say, Kathleen, I'm gonna re nickname you, Kathleen, the Jet Setter at this point in time, hearing about all these trips, it's amazing, absolutely amazing! Kathleen - Yeah, I was about to say, I've also been to, my son lives in Bangkok, so I've gone to Bangkok on my own as well, just cause I can with no, do you know with eating the different food and the different temperatures and humidities, absolutely no stoma problems at all – none! Other than getting up from a squat toilet! I mean, maybe anybody would have that problem, I dunno! Hannah - You wouldn't have even dreamed of heading there before stoma would you? Before stoma - not a chance you would've even thought… Kathleen - No, no. Paul - I'm just, you know, I'm flabbergasted if you know what I mean. As I say, you know, you went from this person who's, for want of better words, missed out on, you felt you missed out on a lot of stuff to being able to, you know, as I said, jet setting off around the world and all those sorts of things! One of the things I do, I almost wanna ask you about though, is traveling to all of these different places, and you mentioned food. I'm sure for a lot of Ostomates out there, you know, you look, you go online and it says you can't eat this, you can't eat that, you can't drink this, you can't drink that, you can't do this, you can't do the other. And by the time, if you've got all of that information, basically you're allowed to drink water and eat dust, that's pretty much all, you know, if you could take everything into account. How have you found diet? How have, you know is there anything that you go, do you know what, I just can't eat that. That is a no-no for me. Or do you know what, I can take it, I can leave it. How's diet for you? Kathleen - Well, do you know the saddest thing was before my stoma operation or just after, I can’t remember. I was told that I could no longer drink fizzy drinks, and I was devastated. I love a Diet Coke and I was, I jut thought, well, that's that then I'll never get a Coke again. So, somebody said, ‘oh, yes you can’! So I tried it. I can drink anything. I thought I wouldn't be able to get any alcohol. That's not true either! Food, I just eat everything in moderation. There's things like mushrooms, so I like mushrooms, so I wouldn't eat a whole one. I would chop it up and then you just have chopped up mushroom, which is fine. Or well, obviously sweetcorn and peas, we know how they go through your system, you know, they make their presence known at the other end! But everything comes through fine. I think. I wonder if it's having fluids when your eating helps, I dunno, I kinda just go by instinct! Paul - This has probably been one of the funnest podcasts I've recorded Kathleen, and also one of the most empowering as well. It's just your outlook and your personality just shines through and I'm sure every listener you know, would agree with me that you are such a positive advocate of, you know, having a stoma isn't the end of the world, isn't the end of someone's life. For you, and I hope you don't mind me saying, it seemed like it was the start of your life? From the age of 29, it was… but then when you had your stoma in your fifties, it was, your life started all over again. Kathleen - It was over 20 years of being tied down almost. I’m flying free now! Paul - Talk about flying. You've gotta, it must be a while since you've been away, so have you got another holiday coming up? Kathleen - I'll be going to Bangkok next year, and I can't wait! Paul - If you need a stoma nurse to come with you, please, just please just let me know and I can tag along. I really, really don't mind! I'm sure you can fit me in your bag, it's fine! Kathleen - The only thing I'll see is yes, I'll hopefully going to Bangkok next year. But how I do it for myself is I can do it as a 14 hour flight, or I can do two seven hours. For me, two seven hours works better just because the airplane seats aren’t the most comfortable, but the handy hint is - don't wear the cushion around your neck! Paul - I think what I would like to do is just extend a massive, massive thank you from myself and all the listeners just to say thank you so much for joining us today. It's been an absolute privilege. As I say, I haven't giggled this much on a Monday morning when this is being recorded for a long, long time. So thank you. It's been an absolute pleasure talking to you. Thank you so much for sharing your, sharing your story, sharing your experiences, and sharing your positivity. Hannah -What a great pleasure it's been to talk to you again. Always a pleasure and thank you for spending time with us. Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk