S5E3 Travelling With a Stoma Intro - Welcome to Stoma and Continence Conversations from Coloplast Professional. I'm Hannah, Ostomy Care Associate Education Manager at Coloplast. Working in specialist care, I know that stoma, bowel and bladder issues impact the lives of those 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, discuss the latest hot topics in the world of stoma, continence care and specialist practice. Hannah: On this episode, I’m exploring what it’s like to go travelling when you have stoma – an area which I think we can all agree throws up many questions and a lot of common misconceptions too. To help me do that, I’m once again lucky enough to be speaking to two of our Coloplast ambassadors who have experience of travelling with a stoma. Later we’ll hear from Sarah, who chose to go down the irrigation route with her colostomy over 15 years ago. But first of all, I’m chatting to Rachel aka Rockin 2 Stomas. Rachel is a ‘double bagger’ with both an ileostomy and a urostomy. She’s originally from Wales but now lives in Dorset. Rachel had her ileostomy formed in 2012 due to contracting campylobacter food poisoning, this in turn also caused her further long-term issues resulting in an urostomy formation in 2015. As you will hear from our discussion, Rachel has really embraced life and travel with her stomas….

Rachel: My name is Rachel. I am 36 years old and I'm originally from Wales, but I've kind of lost my accent, so it's not really very Welsh sounding, it's a bit of a Dorset twanh in there because I'm currently living in Bournemouth and I am what the stoma world calls as a double bagger. So I have a urostomy and I also have an ileostomy. So I had my ileostomy in 2012, and then I had my urostomy in 2015. And when I was about 20, 21, in my third year of university training to be a therapy radiographer, I contracted campylobacter food poisoning, and it made my bladder and bowel fail. So they just wouldn't work at all. And it ended up that I needed my ileostomy in 2012, because I was severely malnutrition, I couldn't empty my bowel at all and I had to have the stoma. And then later on, after seven years of a catheter, the cells mutated in my bladder and my bladder needed to be removed. And I was 28 at the time and I had to have a second stoma. And I have to be honest, I didn't really like the ileostomy I had, I really struggled with it. So when I got told I needed a second stoma, it was really, really difficult for me. And it kind of made me realise when I, after I had the surgery, that I needed to do a lot of work on myself to accept the stoma. It was a time when, back then there wasn't much online, I was very much isolated. I kind of was doing it myself, and it was difficult. I have a complication with my ileostomy, I've got quite a large prolapse, and I think that didn't help in me liking the stoma. You know, when I first had my stoma, I put on a lot of weight, which was great, because I was so thin, but that struggled with itself and when I had this prolapse as well, I think the body image and everything, I just struggled to accept it. I struggled to like it, I struggled to embrace it. But when I had my urostomy and my bladder was removed and the pain, the horrific pain I was in with the catheter, it was like my world has started. I remember what coming out that hospital. I went in, in a wheelchair. and I walked out and I just thought, yeah, now is your time to just embrace it and now it's just to go with it. And I started a blog Rockin 2 Stomas and that was it then. It was a nurse that suggested for me to start it because she didn't know anybody with two stomas, and now there's a whole community of us! And yeah, it's just, it's given me a purpose and I've gone out of that poor me victim mentality where I lost my career, I lost my identity, I lost who I was to now helping others and now you know, I'm more than my bags, you know, I'm Rachel and I've got all this about me. I was in horrific pain, obviously. I had a super pubic catheter as well as a prolapsed ileostomy. And I think the mindset and the place I was in is, I was housebound, I was bedbound. I wasn't in a good place mentally. And I think that enabled me not to really embrace my stoma. Like at that time I didn't, I didn't travel, I didn't go outside of my area. I couldn't get on a train, I wasn't able, I was isolated to the pain I was in, but also with what I was allowing myself to do. So once I got rid of my bladder and the painful spasms I was getting, it was that moment where I think it enabled me to… okay, now is the time to kind of embrace it. Now it's great when you're in a festival and it's great when you're on the beach and it's like, it's just a different way of going to the toilet, but it took me a while to get there. Hannah: I just really put it, cause I know you, as you said, we’re gonna be talking a little bit about travel. And one thing I really zoned in on, there was two things you mentioned that you've done with your stomas, both holiday types of things, but I would say very different types, of festivals and a beach holiday… So I'd really liked it to hear a little bit about those. I suppose first the festival side of things. I think from someone that's had a stoma myself, festivals probably would be one of the scariest things that I ever thought of doing mainly because we all know that festivals and toilet facilities aren't normally the most compatible and happiest of objects. So tell us a little bit about when you went away with your stomas to the festival... Rachel: So I went camping for the first time last year with my stomas, and I was scared. I thought, how the hell is this gonna work? I made sure nobody was in my tent, because emptying my ileostomy at night, like, because it's smelly. I had like a plan, that I was gonna be on my own… and my friend was gonna stay with me, and I said, no, no, my own tent! And at night with my urostomy, I hook up to a night bag, so I have a night bag which I can empty, which is quite handy actually. But with my ileostomy, I have to empty quite a few times in the night, especially if I eat past six o'clock. If I don't eat after six, I empty less. If I eat more, then I empty more. So, yeah, and I just worked around it. The first time I went camping it was May, and it was really cold minus two degrees in Dorset! And when there’s steam coming off your output, you're thinking, yeah, now this is a bit like, so I did that for the night and I thought, no! So I went home, I went home the next day and I went back. Then, I went to a festival in the summer, and it was with the boiling weather in August. It was like 32 degrees, went for four days. It was amazing. I went with my friend, I had my own tent. Had to keep on top of the hydration because I was really, it was so hot. It was trying to stay out in shade, and we weren’t in a good place, really, with all the suns so, yeah, I mean, it was just, it was just really lovely, and it made me realise, wow, I never ever thought I could go camping. You know, when I got ill, they didn't think I would make 30. I was really, really poorly. And even after my urostomy when I was 28, they said that I wouldn't make 30. So everything for me has been a bonus. But because they said, oh, you know, maybe don't do that, be of caution cuz you were in hospital with sepsis so much, be around the area and things, I'd listen to that. But now I think in a place, I've been pushing myself the last few years of really, okay, what can I do? And camping. Yeah, it was awesome! So I'm hoping to go again this year. It probably won't be as hot, but yeah, the festivals were just great and it just, it showed me, and it, a lot of it is planning, you know, making sure I had my stuff, making sure I had clean water when I needed to change my stomas and just over preparing. But it was great! Hannah: And like you said about the hydration as well, did you take any extra supplements with you to help with your hydration? Because it sounds like we were having unusually hot weather at that point, especially for the UK!? Rachel: Yeah, it was the weather when it was like 35, 36 degrees. It was just unbelievable! Yeah, I took, I have electrolyte tablets anyway, but one of the days I did go home just to kind of have a bit of shelter cause it was staying outta the sun as well, because it was like a holistic wellbeing sort of festival, which is great when you were in the tents, but the tents were quite heated when you're doing yoga and meditation and things like that, it was quite hot and stifling. So yeah, I took some electrolytes with me. I made sure I got shelter where I could and yeah. But I’d just like to talk a little bit about the first time I went abroad when I had my stoma. So I had my ileostomy, like I said, in 2012, and I just couldn't think I could go abroad and I didn't go abroad and I stayed here. And then, Coloplast asked me to trial the concave bag with Steve, and they asked for us to go to Gran Canaria. And I remember I looked at him and I thought, I've not been like abroad with my stoma, and then straight away thought, no, I'm not going, I'm not going abroad. I can't go, but I can't go! What? What if I get buzzed? What if? And all this kind of like negativity of, oh no, I can't go. And then, I did go and we went together and it was the most amazing, I will forever be so grateful for Coloplast for giving me that opportunity because I have been to so many places since then, because I went there. I was fine going through airport control. I did get stopped and I did get scanned and I had to go to a side room, but I explained everything. I had my letters, it was fine, I'm okay with that process. And I went through and it was, unbelievable! And at the end when we were all there, all the filming and the crew and I just was crying and thinking, I never ever thought this, I could do this. You know, it was me stopping myself from thinking I couldn't do it. It was just incredible. And since then I've been to Thailand, Canada, Egypt, I'm going to South Africa in March, end of March. So it is like, the world’s literally been my oyster, but I just needed that push, I think to go, you know what, you can do it. You know, one year I was in hospital six times with urosepsis and I'm in recus and intensive care each time. So that's quite a lot of times to be in, and I think that's what stopped me from going. What if I get ill abroad? What if this, what if that, and all the what ifs. But I just went for it and yeah, it was amazing. And I even survived food poisoning in Thailand! Hannah: Oh, do you know what, that was gonna be my next question regarding food, but it doesn't sound like the food was necessarily the good part of it! So you had food poisoning as well!? Rachel: Well, yeah, no food was amazing. No, it was my own fault, I ate sushi from the market outside, and the sushi looked amazing, and I ate sushi. And then, but my partner at the time also had food poisoning, so we both had it. And I thought, yeah, don't do that again! Hannah: Oh gosh! Rachel: So that was my own fault, but I got through that. I kept hydrated and it was okay. You know, again, I was worried about what would I happen if I did that, you know, and actually, it was okay. Hannah: And you said you’re off to, is it South Africa in March you're off to? Rachel: Yeah, my partner's South African and I'm going to see his family and go there for three weeks. So we're gonna go all around South Africa, so that'll be amazing. Hannah: What a fantastic and open talk that was from Rachel. A true testament to show that having a stoma or stomas in Rachel's case should no way hold you back from enjoying life. Now, as I said earlier, I also spent some time chatting with Sarah. She has had her colostomy for over 15 years, formed to a rectal vaginal fistula, potentially caused in childbirth. Sarah soon went down the irrigation route and is extremely passionate about colostomists having that opportunity… Sarah: So I've had a stoma for about 15 and a half years due to rectal vaginal fistula, possibly after my 10 pound daughter flew out really speedily! But I didn't really get symptoms, didn't get symptoms for about three years, so they've never really got to the bottom of why I had it. No IBD, nothing going on there, so it kind of is what it is. I had lots of repairs, which finally did work, but really at the cost of my sphincter muscle. So stoma is permanent. A few years later I had a hernia repair and a proctectomy, and I love my Barbie bum, best decision I made. And then in my day job, I'm a research scientist at Oxford University. But this is my hobby of trying to support other people and make a little bit of a difference in the stoma world. Hannah: Oh, that's, you hear that off so many of our stoma people that they, that's what they really want to do. They want to make a difference out there, creating that awareness out there. So you've actually got a colostomy, we've spoken to a few people now that have got ileostomies, but you've actually got a colostomy. But one of the very interesting things about Sarah is, you actually choose irrigation as an option, don't you, Sarah? Sarah: I do, and for me it's, you know, it's a management option for people who are able. But it's fair to say it changed my life. It really made such a difference to me to put me back in control. I've got a friend who once said that he saw irrigation as the gold standard method of managing a stoma. And I sometimes think that I feel a little bit of a fraud almost when I'm with lots of people with stomas who have problems. Because I irrigate, I've never had sore skin. I never leak. and my stoma very, very rarely does anything unless I eat some peas. Lots of peas, or lots of red wine . And with peas, you know that peas come out whole, but that's not because I don't chew them. It's because the little men inside you rebuild them! Hannah: I agree, they do rebuild things like sweet corn and peas get rebuilt somewhere along the way, I agree! Sarah: It’s just the little men that live inside! Hannah: The little men! I imagine a lot of people would think that travel and irrigation can potentially be a little bit tricky because of the differences with maybe hydration diet, even just generalised routine. So I'd love you to tell me a little bit about any travels that you've made be it abroad, this country, anything that you've done.. Sarah: Well, I decided once I had my stoma that holidays were essential after any operation because I think you need a holiday to get over it. And I had a lot of fistula repairs, so I decided I needed a lot of holidays! So I think irrigation has made it easier for me. So firstly, I would irrigate as soon before going away that I could, so I knew that I was, you know, ‘clear’, so I had no worries on the plane. I'm a bit of a one for taking excess equipment, so I do overpack, but I like to be, if I've got more stuff than I need, I know I'm gonna be okay. So I take two irrigation kits with me. I use the gravity kit, so it wraps up, folds up to next to nothing, so I've got a spare, take plenty of stuff. First thing most irrigators would tell you when they go into a hotel bathroom is they look where they're gonna hang their bag. Most of the time you've got a bath next to the toilet. Often in a typical hotel room, you've got toilet, basin, bath, shower rail. So you've got your hook over your shower rail. There's always a chair in a hotel room. I sit on a chair to irrigate rather than on the loo. Cause you've gotta be comfy, haven't you? Hannah: Absolutely! Sarah: And I also, so I take a metal ‘S’ hook and I also take a ‘Command’ hook because there have been a couple of times when there is no rail, So a ‘Command’ hook sticks to most things, really. In fact, I've left a few ‘Command’ hooks. I've left a ‘Command’ hook in Florida. I've left one in Madeira… You can take them off the wall, but I figure, you know, somebody might find it useful!? Hannah: Like a little badge of honor where you've been! [00:16:20] Sarah: Yeah! The other thing to think about is the water. So the general rule is if you can drink the water, you can irrigate with it. But again, I've not even let that stop me because if I go somewhere where you, where locals even don't drink the tap water. If you're in an all-inclusive hotel, you can get water. If you are somewhere where people don't drink tap water. Bottled water is actually cheap to buy. So if I'm going to an all-inclusive, like this year in, well last year now, I went to Greece for a week. It was an all-inclusive hotel. So I emailed the hotel and said that I was coming. I had a medical condition and needed to do a bowel washout. Could they please provide me four litres of water a day, and they did, they brought it every day. So I've got a little setup, I take my travel kettle, I take an extension lead and I take a travel plug. And then often there's a little table somewhere on the balcony or a room or a chair, which is where I stand everything cuz I am a little bit conscious about electricity in the bathrooms! Although most countries do have plug sockets in the bathroom, so it works well. So I have my kettle plugged in, extension lead, just in case it's a bit further away than I'd like. Travel kettle, irrigation kit. Put a little bit of boiled water in that's hot. Add room temperature water to get the right temperature. Bob's your Uncle! Hannah: I've just got this vision of you now, sort of in a hotel in Greece, sort of just getting your little set up all ready with your ‘Command’ hook on the wall. I've got the vision now...! Sarah: That’s exactly what I do! And in fact, I had a funny story. We went to Mexico quite a few years ago and I was a little bit, you know, shy of talking about exactly what was what… and I emailed the hotel and said I had a medical condition and I required water for a medical procedure. I mean, I should have just said it was a bowel washout, but I was a little bit hesitant then. Now I just come out with it! And I had this backwards and forwards with the hotel about the water, and I said, I just want clean drinking water. And they finally got it. But then they said, would you like still or sparkling? And I said, I think we'll have, still would be…! Hannah: Haha!! A bit of sparkling, might move things along a little bit quicker I don’t know!? Sarah: You never know! So for me, it's kind of a payoff. So I'm on holiday and you know, I accept my stoma. I don't love it. I probably never will love it, but it's there and I've gotta make the most of it, and I'm damned if it's gonna rule my life. But when I'm on holiday, there is a payoff in the, you know, the family may be by the pool of an afternoon and I'm gonna go and do my ‘bits’ before dinner. But that payoff of missing out on an hour by the pool or an hour going for a walk for me is everything because the other 23 hours of the day, I really don't think about it. Hannah: That's really good. I mean, have you ever had any issues with hydration being away with your stoma? Sarah: Once we went to Florida, this again was quite a long time ago, and there was one occasion when I infused a litre and nothing came back out, so I concluded that I was probably dehydrated! But generally I don't find it to be a big issue for me. Whether that's luck or what, I don't know, but I've not really had a problem. I mean, general rules apply for everybody, don't they? If you're on holiday, you're somewhere hot, you should drink more anyway. And if you're having the odd tipple here and there, you should also have some water to go with it. Hannah: And that brings, actually you're saying about drinking a few tipples. I know you mentioned earlier that occasional issues with red wine. So when you go abroad, especially with all-inclusive, you've gotta have a glass of wine with your meal. Have you sort of curtailed any eating habits when you've gone away or anything like that, or have you just gone with it? Sarah: I’m not a big drinker, if I'm honest. And I'd rather a gin and tonic than a wine! So red wine, I've kind of given up red wine because it does fast-track through me. If you're at home, you could cope with it, but I'd rather not, and I'm not that bothered. So I'll have a gin and tonic, which thankfully doesn't seem to do anything to my stoma so I'm quite happy! Hannah: How do you manage with things like your travel insurance and things like that? Do you have a particular company that you go with? Sarah: I’ve been lucky, I think, because I can tick no to every reason why they ask, have you got a stoma. Because I've not got, I've not had cancer, I've not had bowel disease or anything, it hasn't really made much difference to mine, I think early on it's probably made a difference as I've got older, more than anything. But I think the most it put on was like 20 pounds or something on the, on the policy. So I would always say declare absolutely everything. And in fact, we're taking, the kids are grown up now, they're 20 and 25, but we're taking them to Barbados in six weeks time for a week's holiday. And I just bought an annual insurance for the four of us, but because we are not a family, because they're adults, we’re a group that seemed to hike the price up. But I don't think my stoma had much to do with it. So I've been very lucky because you do hear that people have extortionate travel insurance, but I think it very much depends on the condition and the reasons why you've got the stoma, so I've been lucky there Hannah: And really good advice declaring it. Cause I can imagine the temptation is for some people just, oh do you know what, it'll be fine. I won't declare it. But as you said, with packing things, always prepare for the worst-case scenario. And you did that with irrigation supplies. I'm sure people do that with their stoma supplies when they go away. Always pack for the worst case scenario. Pack and prepare for the worst case scenario. Sarah: Definitely. And even though I irrigate, I will always take like, I dunno, 10 drainable bags with me just in case I, A, go mad on the red wine or B, get an upset stomach because you just wanna be prepared! Hannah: Absolutely. And I say you can guarantee you take them all the time you don't need them. The one time when you did not take them would be probably be the one time when you needed them! Sarah: Absolutely the first time we went away, we went to Florida, actually nine months after I had my stoma, and I was already quite happily irrigating. But I was absolutely paranoid about the supplies issue and I remember packing. So we went in the April and I packed stoma bags, irrigation equipment and everything. And the stuff that I'd packed in April, I was still using in July when I got back! Hannah: That is being prepared! Sarah: I'm not as bad now, but I do take all of my stoma supplies in hand luggage. I know some people will split between hand luggage and hold luggage, but I do get a little bit precious and I do like to have it with me. Hannah: Have you ever had any issues with airport security, with the supplies or anything like that? Sarah: A couple of times my metal ‘S’ hook has been picked up. I dunno what they think it is? So going through the scanner, obviously nowadays a lot of people go through the body scan. I generally don't say anything if they look a little bit bemused, I just say I've got a stoma and kind of pat my stomach and they normally accept that, they might wave the wand over it, but it's never ever been a deal. So yeah, my bag, it's kind of 50/50, I've decided whether my bag gets pushed off or comes back to me. I've got, like I use a seal around the stoma bag cuz I've got the most rubbish stoma. And when we went away last time they stopped me because of the seals, they said it looked like liquid. And I dunno if it's the adhesive on them cuz they're stacked up in a little pot? But they were fine as soon as I opened it up and they had a look. It's normally my husband who gets stopped because he forgets that things like lip balm are liquids! Every time, there's always something! My advice for the going through security I think would be, consider yourself as no different to anybody else when you go through security, because they're not looking for things. I mean, it is for our own benefit, isn't it? And it's normally swift. And what you wanna do is get through that door and get your cup of tea at the end of duty-free, don't you, or a glass of champagne! Hannah: Another great and very different insight from Sarah there. And I must just say thank you to both Sarah and Rachel for their time and how great it is to hear their positivity around life and travels with their stomas. In the podcast description, there is details of both Sarah and Rachel's social media as well, so that's well worth a look. So now that all remains for me to say is thank you for listening, and please join us next time. Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk