Bowel Research UK’s Patient and Public Involvement Manager, Sam Alexandra Rose, is joined by Louise Usher, a registered nutritionist, Crohn’s disease patient and a guest Blogger for Bowel Research UK. She talks about her past experiences, how she became a registered nutritionist and how that allows her to help others with Crohn’s disease. They also talk about the daily and holiday struggles of Crohn’s patients and provide useful advice for dealing with the challenges that come with the disease. Furthermore, they provide plenty of information on what to do and what to avoid to reduce the risk of a flare-up while travelling, as well as how to get help from local resources.
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it.
I’m your host, Sam Alexandra Rose. I’m the patient and public involvement manager at Bowel Research UK. And as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hello everybody. Today I’m sitting down with Louise Usher to talk about nutrition and Crohn’s disease. Louise is a registered nutritionist, A Crohn’s disease patient and a guest Blogger for Bowel Research UK. Hi, Louise. Welcome to the podcast.
Louise
Hello, thanks for having me.
Sam
So I always like to start off by giving people a little bit of context. So, could you tell me a little bit about, firstly, your experience with Crohn’s disease, so sort of, when were you diagnosed and how did that come about?
Louise
Yes, sure. So initially I was officially diagnosed in 2009, which feels quite recent really because like a lot of people, had a long history of symptoms, misdiagnosis, it was quite difficult to get to the bottom of which I know so many of the listeners are going to be able to relate to that as well. So, I’ve had bowel problems since I was very young, since I was a baby, really. But I had new symptoms that came up in 2009, which a lot of red flags came up with a healthcare professional. So, I was put on the… on the fast track, at that stage, for a colonoscopy, and that led to a diagnosis. Initially, when they did the colonoscopy, they could see that I was ulcerated, so they thought that’s ulcerative colitis. But then when the biopsies came back, they could see under the microscope that it was, in fact, Crohn’s disease. So yeah, things are relatively well managed now, but, again with Crohn’s, as always a little element of surprise and sometimes you think, I thought I was managing quite well there, but then there’s something that comes up that you got no rhyme or reason for. So even you know, with my knowledge around nutrition, I’ve still got that same… you know, we’ve all got that thing where we think, oh, I don’t know what that was about, when it comes to Crohn’s so.
Sam
Well, I’m glad to hear that it’s mostly well managed at the moment. Is there something in particular that triggers, say a flare up, does it tend to be like certain types of food? Or what, what kind of, tips that off?
Louise
For me, and this is, you know, the more that we talk, you’ll see, I’m very passionate about the fact that there isn’t one rule fits all, in my belief and the research that I’ve read, everybody’s body is so unique and so different to them. And when I’m speaking with patients, I liken it to… like a cup almost. So, if you’ve got a cup that you’re filling up with a bit of stress, a bit of lack of sleep, a bit of dehydration, and then the trigger food, all those things together might just tip it over the edge to cause a symptom. But yet one of those things on its own, your body could sometimes deal with that okay, so it really is a minefield, to be honest. And I’m really glad that we’re doing a lot of important work in the in the world of nutrition. But my belief is that it’s such a holistic thing, and for me, I find I was very responsive when I changed my diet. But I was also diagnosed with celiac around the same time and that was because I started to really look into, the role of diet and lifestyle and what could I do to help myself? I mean, it’s funny. Actually, 2009 to today, I think the clinicians and the healthcare professionals have got quite a different outlook because, at the time I saw a dietician who spoke about the eat well, eat well guide, we call it now, it was eat well plate at the time, which again is a one rule fits all. And I was advised by my gastroenterologist that only medication or surgery would, would help and he said there was absolutely nothing I could do to help myself at all, and I wholeheartedly disagree with that. But I don’t think we’ve got all the answers because the human body is gonna do one thing one day and something else a different day so… but yeah, for me I was very responsive to certain types of foods.
Sam
It must be difficult sometimes when maybe you are, you know, eating like the right foods for you. Like is there, is there ever a time when there doesn’t seem to be any kind of rhyme or reason for why your body is doing what it’s doing?
Louise
Yeah, there is sometimes and even on those days normally with me because with my, my other sort of nutrition work that I do abroad sometimes I’ve found even if I don’t eat anything, but I’m about to get on a plane there can be those times when, I don’t know whether it’s, I mean, I don’t, I’m not particularly afraid of flying, but maybe there’s something in the body that’s saying, ooh you’re upsetting the balance, and what’s going on here, and when I’m at the airport, that can be the time when, you know, there could be bowel incontinence for example. So, I always now prepare that. But obviously the first time that happened, I wasn’t prepared, and I wasn’t. Ready for it and so yeah, just the same as everybody else I think, you know, we need to address that Crohn’s is definitely one of those things that; doesn’t matter who you are, what you know, or how you manage your life, sometimes you’re not in control, it’s in control, and it’s quite important, I think, to sort of lovingly accept that a little bit and just think, well, that’s just how it is. I’ll do the best that I can do, but might not always get it perfectly right, if that makes sense. I think you probably understand what I mean.
Sam
Yeah. Yeah, absolutely. Yeah. And it, it’s definitely good to remember that it’s not sort of, a one size fits all thing. Yeah, as for the same with a lot of illnesses, I guess like, one food that affects somebody might not affect somebody else in in the same way. And I love your kind of metaphor of the cup as well. And thinking about how other things can factor in so food plus potentially stress I think did you mention, sort of sleep as well. Yeah, it sounds really interesting how all of those different things can factor in.
Louise
Yeah, definitely. When you look at, for example, blood glucose levels, you know nothing to do with bowel disease, but that is such a minefield. Again, certain people could eat certain things because if they eat it, coupled up with something else, they’re, they’re gut microbiota might be like, oh, I’m fine with that. But then something else could really raise their blood glucose levels. And you know, even with, say, hay fever, for example, so many people get hay fever, now, don’t they? And the, the histamine reaction you get with hay fever is very much the same with that cup, and it will get to a level that you’ll then react to, you know, get your hay fever symptoms because the cups full up. Because like, you know, some of us have had things like, you know, skin prick testing done. I had that done and they said I was allergic to certain things. And to my surprise, I was also allergic to my dog. And I thought well, I wonder if. That makes…
Sam
Oh no!
Louise
Yeah, and. And so, times when I don’t allow him so much near me, is at the same times when the trees are in bloom and the typical hay fever time, and it just lowers that histamine, so it stops that cut from filling up and tipping over. And I always use that a lot for people when I say, you know, sometimes you might be able to, and you’ll know your own triggers after a certain time, don’t you? And you get to the stage where you think I might be able to have that because it’s, I’m at a wedding or it’s somebody’s birthday and, and… But yeah, too much of one thing can just tip you over.
Sam
But the more that you know about your body and yourself and how you’re going to react to that and how all these different things affect you, then the better you can manage it.
Louise
Yeah, absolutely.
Sam
So, and you’re a nutritionist as well. Were you always interested in food? Or did your experience of of Crohn’s kind of impact that decision in that career?
Louise
Really good question actually… I’ll try and keep this short because it’s quite a long-ish story. When I was at school, which was quite a few years ago now, back in the late 1980s, I wanted to be a dietician because, like we had, I think it was quite unusual actually then. But at school we had a subject which they called food and nutrition and, it was sort of like the food tech that everybody does at school. It’s similar to that. But they put a lot of nutrition in there and I found that so fascinating that, say like, rickets for example, you know, you eat certain a thing and then your bones are better and, you know, with scurvy you, you eat vitamin C and then your gums are better. And I was like, wow! So, what you’re putting in your body can actually affect your health? And bear in mind how long ago that was. I’ve was fascinated with that. And I asked the question if that’s… to the, you know, the advisors at school, Is that a job I can do? And they said, oh No, there’s no jobs. There’re no jobs for being a dietician. They said we’ve only got about 4000 in the UK, which really put me off because obviously I wanted to do well. I wanted to work. So instead, I chose to go down the catering route and I qualified as a chef to try and, you know, still incorporate food somewhere and had a lovely career with that. But then about 10 years ago now, I was talking to one of my clients and, she was a mature student going back to university to do psychology, and I thought, ooh, I wonder, is it still, is it still too late, which now that I work at university, I know that that’s not the case. There’s so many mature students. So, I went back and started on my journey to get my degree. So yeah, I’ve always been interested in it. I always wanted to do it, and much as I thought that was kind of gone and I was doing other things. It did come back. And then yeah, it’s been really an interesting journey. So yeah, I’ve loved it.
Sam
That’s really interesting. I always like to hear people’s kind of origin stories about how they, they got to where they are so that’s really interesting. So, what does your role as a nutritionist involve and who do you help?
Louise
So, I’ve got quite a few different roles with… as a nutritionist, I teach human nutrition and health now at the university where I did my undergrad, which I absolutely love and I really love helping the students with their study skills, and the pastoral care, and I’m very much into motivational stuff with them. So, you know, they might have a moment of thinking, this is really heavy science I can’t do it! And I want to show them, yes, you can. You know, if I can, you can, sort of thing. And so… that’s a, that’s a big part of my role, but also consult one to one, do one to one appointments with people who feel they’ve got some sort of digestive difficulties. Sometimes they’re people that have got IBD, sometimes they might be people with IBS for example. Which a lot of people confuse the two, but again, you know there’s a, there’s a lot of ways that we can help with that, and I work with them to try and find out if there’s any food triggers and often there, there is. So, I work with the laboratory who test the patient’s blood to see if there’s any immune reactions to indicate any sort of food allergies or intolerances. Yeah, often there are. And like I say with myself, I found out I was celiac and that was a huge trigger for me, so I did eat gluten right up until my, sort of, mid 30s which really wasn’t a good thing. But I also work with hotels and restaurants, highlighting the restaurants and the hotels who offer accessibility, like toilet facilities, for example those places who’ve got their menus highlighted with allergens, and I also sometimes help train the staff on how they can help people who might be eating there, who’ve got health related dietary requirements.
Sam
Quite a varied role then, actually.
Louise
It is quite varied, but it’s, kind of, it’s taken a long time to sort of streamline it into, into my thing and my passions, which then can help lots of other people, which is what I wanna do. Cause we’ve come a long way, I think, with all of this but there’s still a little bit of work to do. But yeah, I really do enjoy it and it’s quite yeah, it’s quite varied, but lots of different people you’ll be working with, you might be working with Professor one day, and with the chef another day, but it does all sort of marry up quite nicely. So yeah, I love that.
Sam
And does it help you as well? As a Crohn’s disease patient, does that. I guess it kind of gives you a bit more of an insight into your illness. How has being a nutritionist helped you in that way?
Louise
Oh yeah, massively hugely, and I think the deeper that my research goes, the more I learn that we don’t actually have all of the answers, which I think is really important and I think anybody that says to you, I know exactly what you need to do this is it and then that’s gonna get rid of your problem, I think that is probably the most important thing to recognise. But yeah so, me learning about nutrition has for me been, been huge, but I’m… I don’t think I’m ever going to learn everything to know with my condition or somebody else’s, it’s, there’s just too much to know. So, sometimes there’s myths out there or there’s things that I use myself, as a bit of a Guinea pig. Like apple cider vinegar gummies, for example, you know there’s a big thing about them and helping with your, you know, with your stomach acid, and I thought, let’s give that a try. Let’s see if I can feel any different or not. But I also I’m a believer that sometimes things that you focus on can become a thing. So I’m a little bit mindful of that as well like, very holistically, the way that I look at it, but yeah, for me knowing to be honest, I think the biggest thing that has come out, is me knowing which papers to go and find. Research papers which ones to ignore? Which ones look credible? Because there’s always within the research world, you know, it’s. I don’t necessarily disagree with people looking on Google, but it’s you’ve gotta look at the right thing, initially, I know when the Internet started and all the doctors are saying don’t go on keyboard warrior in. But I think sometimes there can be some knowledge gained but like it’s knowing where to look, the right places. And for me that’s what my role as a nutritionist is. There’s a, you know, I mean, I’m regulated by the Association for Nutrition, so you have to be scientifically based. You can’t just, talk about the latest fad without that scientific knowledge, so that’s probably been the biggest, most important thing, I think that I’ve taken away from that.
Sam
Yeah, the Internet can be, quite a difficult place to navigate, can’t it? And I think that me and you have both done a little bit of blogging on the Bowel Research UK website about how, yeah, it can, it can be difficult to find relevant information, again because you said you know one size doesn’t fit all everybody’s different. What affects one person might not affect another. And yeah, you do see these things on the Internet that say, oh, this is definitively what you should do, and this is definitely gonna help you. Maybe from somebody that’s potentially trying to sell the thing that they want you to use. Yeah, it’s a yeah, difficult to navigate on the Internet for sure.
Louise
Yeah, I quite agree with that. There’s yeah, I’ve got, I’ve got a little bit I think we’re probably gonna talk about in a minute regarding that. Because again, you know those things that people are trying to sell, might help some people. You know, we, we can’t sit here and say no, they’re not going to help you. So, it’s only because they’re trying to sell it, so don’t buy it. They may. But then they also may not. And is it gonna cure Crohn’s? We’re not there yet, Sam. Are we? Unfortunately, we wish we were, but you know, that’s I know a big mission for Bowel Research UK, isn’t it? Let’s end it. Let’s find a cure. But we aren’t there yet, so all we can do is our best and relieving our symptoms and trying to live our best life that we can so. So yeah, but it’s… there’s a lot of rubbish out there, but there’s a lot of really credible stuff as well that’s really important and if people can try and pay a little bit of attention to their own health, I think they can make a difference to their own life.
Sam
I really love how you said that you’re a little bit of a Guinea pig as well, sort of testing these, these things and that’s, that’s really, really interesting. Are there any other… you mentioned the, is it the app- apple, the gummies?
Louise
Apple cider vinegar, yeah…
Sam
Are there any other kind of common myths or misconceptions that you come across quite a lot, regarding food and bowel conditions?
Louise
Yes so, I think there’s a lot out there, there are… like you say, it’s often people are trying to sell things. So yeah, there’s, there’s absolutely loads that people should take with a pinch of salt, I think because the difficulty we’ve got in the nutrition world is; to be considered a registered nutritionist, you have to take the same degree that the dieticians take and you have to be regulated by the Association for Nutrition, which basically means you, if you do something wrong, you can be struck off. So, we are regulated and they do check that everything we’re saying is credible however, anybody, and it’s, they’re hoping to change it. But at the moment, anybody can say I’m a nutritionist. They can’t say they’re a registered nutritionist. It’s that one that, that one word makes a massive difference. So, somebody could contact somebody, that’s got inflammatory bowel disease, and say “I can really help you, I’m a nutritionist” and it’s unlikely that service user is going to know the difference between registered nutritionists and nutritionists or nutritional therapists is the other one that anybody can call themselves that, and they’re not regulated. And yeah, they’re only trying to sell you a product. I’ll give you an example, so, some people often slide into your DMs and they’re talking about aloe vera. I don’t want to say negative things about aloe vera, because I do think there are some really good properties with it that could really help some people, but to contradict itself, they also contain oligosaccharides, which if you’re eating the low fodmap diet which is the NHS recommended diet for people that have got gut issues. Low fodmap you probably know this Sam, but for the sake of anybody that doesn’t, the fodmap is an acronym and it stands for different things, and the O in that stands for oligosaccharides. So, the recommendation is you eat lower amounts of that and that’s present very highly in aloe vera. So, where aloe Vera might help somebody for something, if you’re trying to eat low fodmap diet, it’s not ideal. So that yeah, like I say with those, with gut issues, won’t necessarily help, but some other people with other health stuff it may. And I think that there… it does get bashed around, that all this will cure your Crohn’s, but it won’t, if we’re not shouting that we’re going to cure it, then it’s not there yet. So, I know at Bowel Research UK that’d be the first thing. Imagine that day that we flag it up right, we found the cure! How amazing that would be. But definitely food can flare symptoms if it isn’t right, the right food for the body and, and I’m sounding quite sketchy with that, but it is the same message. All the while everybody is different and certain foods you will be OK with and certain foods you won’t.
Sam
Yeah, and there’s no definitive food that you can say. You know, this is definitely, you know, something that’s gonna be good for everybody with Crohn’s or not good for everybody with Crohn’s, cause it is so different.
Louise
Yeah, definitely. And I think lifestyle again plays a factor in that because… like I said earlier, with the, you know, filling up the cup, it is, it is quite a big… Minefield almost. And it is finding out your own your own triggers, what works for you, and what doesn’t.
Sam
Just to pick up, because you’ve mentioned nutritionist and registered nutritionist and also dieticians, so what is the, the difference, just out of interest, between a nutritionist and a dietician?
Louise
So a dieticians role in the hospital generally, this is a little bit of a generalisation, but we could be here all day otherwise, explaining this one. Normally they have the power to, to diagnose and to prescribe. So, you might have heard of those little Ensure drinks that people drink in hospital, if they’re low in a certain nutrient and nutritionist couldn’t go into a hospital and prescribe that without a nutritionist, be… without a dietitian being present. But also, what I found out because that was really the route that I wanted to take initially and I did start, I did a year zero, which is what you do when you’re going back after a little while or some other circumstances. But I did a year zero and and that was to go on to do a dietician’s course and as part of that we had to work as a, as a volunteer and I went into the local hospital to help out with feeding patients who needed help with feeding. And that really worked quite closely with the dieticians, and I found that a lot of the patients, they would have difficulty with swallowing, for example, or they might have had a tracheotomy operation. Or perhaps a stroke so they’d lost their gag reflex. It was a lot more of a sort of basic, let’s get some nutrition in you rather than, as a nutritionist and the area that I’m really getting excited about, is let’s improve your health because it’s it might be OK-ish. You know, a lot of people can live not too badly with inflammatory bowel disease. But if we can improve that standard of life through tweaking little bits of nutrition, maybe they might need a supplement or something like that. But what I couldn’t do is prescribe that supplement as a nutritionist. So, I hope that’s answered your question, but it’s generally, nutritionists can work in the NHS, but they won’t be the people that will, will write a prescription for somebody who can’t swallow. For an example.
Sam
Got it.
Louise
Yeah
Sam
So, I know that you have a particular interest in nutrition and food while on holiday. So as you said earlier, sort of things like in hotel settings and restaurants and, and things like that and think about allergies and accessibility. How did you kind of get started with that?
Louise
Yeah. So, the thing that started my interest in it was around a similar time to when I was diagnosed just before I was diagnosed. I had my worst flair that I’ve ever had, which involved a lot of losing a lot of blood, losing a lot of mucus that I’ve not seen before. So, and while I was away and experiencing that, as well as obviously really upset tummy, it was quite a worrying time being abroad, I was thinking, what’s going on with my body? But I just put it down to holiday tummy as so many people do. But then when I came back, and the symptoms carried on, I then thought, okay then I need this investigated, which was like I say, I was fast track then for my colonoscopy. And once I’d got some answers, I thought to myself, right, who else is out there suffering and finding it difficult? Who knows what to do when they’re away? And it’s very, we’re very popular with our all inclusives now and, and a lot of people really sort of like going and eating well and drinking well and sunning themselves, and then they get upset tummies and they get worried about it. So, so that was where it sort of started. But as I started to look, because I went back to, this bit of a story, I went back to. It was in Egypt, and I went back to a hotel near that after I had my diagnosis. After I was eating gluten free because my celiac. And I went to the, the breakfast table, and I was married at the time, and I came back from the breakfast table and one of my go to breakfast foods, as I was trying to heal my gut a little bit, was bacon and eggs, and forgot completely it’s a Muslim country. Bacon wasn’t available and I came back with these two lonely eggs on my plate. And my husband said to me, you know, like you just lost your favourite toy, what on Earth is going on? I was like, I don’t know what to eat out there and, you know, it’s, for me now I could go to an all-inclusive buffet with somebody, and say; eat that, that, that, that and that you’ll probably be quite safe. You know, it’s a bold statement, but at the time I didn’t know. And what I decided to do on that trip, was ask to speak to the chefs, because with my background in the hospitality world, I thought right, I know how to talk their language and, and embarrassingly for me, there was me in my bikini, in my throw over like you do when you’re on holiday. And the executive chef came out and he’s perfectly starched white and sat me down, had a lovely conversation with me. And I was astounded at the response that I got from the management team in this hotel. The next, I turned up at lunch and the Maître d sort of waved at some staff members and they were kind of came flocking, took me and my husband to this table. We sat down and then he gave me a very small menu to choose from, of very plain food, which I was OK with that, at the time. And this food especially cooked, and it turned up, and I have found now. Bear in mind, this was several years ago. The majority of hotels will do that and they’re happy to do that, but not many people going on a holiday will know that. So, I’m on a bit of a mission to try and find as many places as I can, show what they can offer to eat… there’s a long way to go with their labelling. Sometimes that gets a bit wrong, or if you ask for gluten free, which is like I do, they often think I’m asking for vegan food, which always makes me chuckle because they’re worlds apart. You know, probably, I would imagine a lot of vegans would find it difficult to eat gluten free because there’s so many of their, their plant-based products, you know, might have that in it. So that’s where it kind of started and now it’s, yeah, it’s growing quite nicely. It’s quite unique. There’s not many people doing what I do. But yeah, I really, I really enjoy that, that is such a lovely job to go, look at what they’re offering, see how they can improve it, sometimes to educate the staff and tell them how they can help the people. And just to help them keep, you know, a bit more healthy when they’re on their holidays.
Sam
Yeah, that’s a, that’s a great thing to be able to do and great to hear that the response was so positive at that, that particular hotel as well and there’s probably a lot of lot of people out there listening who are like me, absolutely love their holidays and food is such… well, food is such a huge part of a lot of aspects of, of life, isn’t it? But, but holidays in in particular, yeah I mean, some of my favourite holidays, the reasons why they’re my favourite is because the food is so good. But then also I guess thinking about like eating out at other special occasions and going to restaurants and things and then. All of the things that we, we celebrate as well. And the ways that we socialise with each other, like lots of gatherings, are centred around food and then you’ve got things like Christmas as well. It’s just such a huge part, Isn’t it? It would be a, a real shame for somebody to, to not be able to enjoy such a huge, lovely part of life because of, you know, having issues with, with knowing what to eat.
Louise
I totally agree with you. I’m a big fan of food. You know, the I’ve lucky with my job. I’ve eaten at some lovely places and the flavours that you get, food is to be enjoyed. It isn’t to be seen as the enemy, but if you don’t know or you slip up or you know something’s cross contaminated. It can be misery for those of us who’ve got gut issues. So yeah, I should do my best as, as I can to, to sort of spread the word and to make sure that, I mean, in my experience, every company or every hotel that I’ve spoken to is on board. They do want to get this right and it is a really positive experience, just spreading the word to get people to go and ask the question. And like I say, we need to do a little bit of work with our labelling, so often I’ll see something and I think, you’ve labelled that gluten free, 100% guarantee it isn’t, and then I’ll speak to the Maître d, who will be more mortified and they will change it instantly. But you just need to be aware of these things. So yeah. I’ll do my best to keep beating that drum and, and like you say holidays as well. I mean people work so hard to get to the time off and then get to go and enjoy this. I mean, people are always saying to me, oh you’re always travelling. But I’m like, yeah, it is work. It is kind of work really, but it’s very enjoyable work at the same time and. There is normally time to kick my shoes off and go for a little walk along the shoreline which is lovely, but we should enjoy that time rather than thinking. Ohh no, but if I go away and you know, then you’re going to cause problems with your health. That’s not what you want.
Sam
Like what can people be doing to manage their bowel condition while they’re on holiday or while they’re at a restaurant or something? Is it, you know, as simple as asking the, the question? You know, I have this condition or I’m looking to eat this particular type of food like gluten free for example. What, what can you? Offer me.
Louise
That that is a good question to ask, I think, but as well, not everybody wants to flag that up. So, I’m a little bit mindful of accessibility with things like that. Someone might not know how to ask it, or they might not want to. They might want to keep that private. So, there are things they could do by themselves. And if you’re talking specifically while they’re on holiday? Simple things like I say again, back to this filling up the cup, a lot of the time at anybody, you know, we’re all subject to getting an upset tummy, whether you’ve got a bowel condition or not. But if we get dehydrated, while we’re away. That’s a massive one that can cause upset tummy because what the colon does, is… it is the thing that that takes the, the water back into your body to form a nice poo we hope and, and you know if you’re not hydrated in the right way, Colon’s not gonna like that. And it’s gonna cause problems. So yeah, drink plenty of water and not from the tap. And I know that’s a really obvious one. But, you know, in general health, especially in hot countries, you’re going to need your water. I take probiotics with me, which don’t need to go in the fridge, just as a little extra precaution. I mean, the jury is still out a little bit on how much probiotics help with gut health. But it certainly won’t do any harm to take it when you’re in another country because your, your microbiota does so much for your health. And when you’re travelling. It all kind of, you know, even on the aeroplane, for example, the air con and recycling the air. That will all change a microbiota, so putting that back in is quite good. Air conditioning as well, this is another one. If you have your air conditioning on at like 18 degrees all through the night. It, it messes the body up again, so I would say keep it around about 22 if you really need your, your air con on while you’re sleeping, that’s another good one that people can manage that themselves. And also, I find when you’re abroad, and this is lots of different countries, trying to get things that are lower in sugar it’s quite difficult. And I’m quite passionate as well about diabetes type 2. We won’t get into that now, but people with diabetes I think are really limited because they like to keep their sugars low, for obvious reasons and their options, often Diet Coke, milk or water. So, if you also think about a child that’s on holiday. They’re probably not going to really want too much of those. They’re going to want the fruit juices that are brightly coloured. That very often the barman will put a little bit of like a, you know, like a mocktail looking thing, and they’re so high in sugar and fruit juice. And they’ll keep glugging that because it tastes nice, and they’ll get an upset tummy because that level of sugar isn’t good in the gut. So, so there’s all of those things you can do for yourself, but if you do feel you can speak to the chefs, definitely do that. TripAdvisor is always a really good one to look on. You can read on TripAdvisor about the specific hotel you’re going to to see if anybody else has had that experience and spoken to the chefs and Facebook groups now as well. I’ve run a few of those for different hotels, not for the hotels, but hotels that I’ve been to that I found are, particularly helpful. You can always go in there and have a little search. And also, another thing as well, hygiene, I think since COVID, hygiene at the buffets has been a lot better, but you got bear in mind if you’re picking up those tongs. Lots of other people may have also picked them up. And if there is a case of, say, gastroenteritis which is contagious, you don’t want to get that, especially, if you’ve got inflammatory bowel disease. Or any bowel condition or ostomy. You definitely don’t want that. So, washing your hands is a good one. Try not to drink the pool water or the sea water, so you’re swimming. I mean, it happens sometimes, doesn’t it? But goodness knows what that does to the gut inside. So. Yeah. So that’s I think what people can do for themselves to try and help look after themselves.
Sam
That’s so much. That sounds like quite a good, you know, amount of stuff that that people can proactively do. Thank you for that. That’s really good. And then what about on the restaurant side of things then or hotels and, and food establishments, what, what else can they be doing to help people with bowel conditions to look after themselves?
Louise
Well, they probably need me to go in there first, speak to them, but no, they… I think labelling up the foods correctly, accurately is really, really important because a lot of the time that can be a sort of front of house thing, whereas the chefs might have been really careful with their… I’m using gluten free a lot as an example, but that’s because I ate gluten free, so they might really prepare that separately and make sure there’s no cross-contamination. It’s delivered out the front and it’s put, they put vegan label on top of it, you know, so labelling is really important. I think they need to, to look at that more. We’ve got celiac UK, who’s who… They’re so brilliant, but we’ve got only a few people in the UK that have signed up to that, which is. It’s a sort of standard to say they’re gonna do things a certain way, and it’s not abroad. There’s nothing like it abroad at the moment, which is a shame. I toyed with the idea of starting that up. But I think that’s a lot of work and I’ve gotta look after my own health as well. So yeah, maybe not. But, give you an example as well, Sam, my local Costa Coffee, I witnessed this the other day. They have their toilet is behind that, you know the codes that you put in on the door like you see at the hospitals and, their toilet is behind one of those which they give you the code on your receipt. Well, one not everybody gets the receipt now anyway. And two, if you’ve got inflammatory bowel disease or some urgency, you’re not going to have time to put in the code. Which I saw somebody, it didn’t work was trying to get somebody, a wheelchair user, through the other, it was a load of a disaster. Having accessible toilets is so important for restaurants and hotels and I love it when I see that sign that I think you know our community is really embracing where it says not all disabilities are visible because you walk into a toilet, thinking am I OK to do this? Am I gonna come out? And there’s gonna be somebody, and I know I’m not on my own with this. You’re worried that someone’s gonna see you walk out and think, well, you look alright.
Why are you using that toilet? And so, when they just put that up there, it just almost gives you a little bit of a Ohh, that’s OK. I can use that toilet. The others might be in use. Or you may need to change if you’re incontinent or if you’ve got a bag, and just being told that’s OK to use that toilet because of that one sign. It’s such a small thing that everybody could be doing, putting it on the disabled toilet door. And I think we are making a lot of strides in the hospitality food world, regarding allergies and intolerance, but there is still work to be done so, I think getting consultancy, like me, to find out these things, what can they do? It’s really not rocket science and there is so much that we could do to make people more comfortable to go out and eat. Because I don’t know about you, but when I’ve been in a flare up, that’s the last thing I would want to do is go out and eat. But yet we all enjoy that. We all enjoy going for a meal, or like you said earlier, whether it’s to celebrate or. Or just for the sake of it, because you’ve had a tough day, you know. And so, to be able to do that in the confidence of thinking, you’re in a comfortable place and that’s OK to, to eat and use the toilet. It’s you know that that would be really that would be really helpful, if they’ll get on board with that.
Sam
Yeah, absolutely. 100% agree with the accessibility of toilets as well, yeah, putting them behind a code or you have to ask for a key or, I think, even when you have to like go in and buy something, I think, ok, fair enough toilets are for customers only I, I kind of see why… But also, it’s just the human need. If there’s something, you know, if there’s a toilet nearby, somebody needs to use it, I think it’s. I just think it’s a bit harsh to, you know… take that, that kind of ability away from somebody say you have to ask for this code first or, or buy something or, or put your 20P in or probably a pound now with inflation, isn’t it?
Louise
I agree with you there, yeah.
Sam
- Just to wrap up then. So what one takeaway would you give to somebody listening who has Crohn’s disease and is struggling with issues around food?
Louise
Good question. It’s a big that’s a big subject, but I think the first thing is to be kind to yourself. I initially, I really put a lot of pressure on myself when I was diagnosed that I had to fix this. But we don’t know the, the human body and what happens in the body is an absolute miracle. And to get every all your ducks in a row every single day, it probably isn’t gonna happen. So, when things don’t go as you wanted, you know, just think, OK, we’re all different. Sometimes I get it right, sometimes I don’t. So be kind to yourself cause I think beating yourself up is really counterproductive. I don’t think that helps. But if somebody thinks that they’ve got a food or there may be food triggering their symptoms, I would suggest keeping a really detailed food diary. Just to try and pinpoint, where the issues are and also as well, you know, the reaction might not be instant. Sometimes it is. I mean I think we’ve all eaten a big meal and then straight away you put your hands to your lower tummy where you know the food’s not there, it’s in your stomach still. But you’re like ohh, feel really bloated. It isn’t there yet, but it’s a feeling that you get. But then sometimes with a, with a food tree, especially if it’s a food allergy or an intolerance, it can be quite some time after, but if you keep a detailed food diary, just to try and pinpoint if there’s issues. But I always encourage the people that I speak to one to one, to write down how much water they’re drinking. If you’re particularly stressed, like even if you’re just feeling a bit of an off day, or if it’s a certain time of the month. That’s gonna affect all sorts of things, and how much sleep you got, which medications you’ve taken, because it might not only be the food, but that could be one of the elements that that is triggering you. So yeah, you might be able to tolerate certain food, but because you’ve got a stressful day, you can’t. And so it, it does sound like a minefield, very complex. But I think if you can even just whittle it down a little bit, the rewards are really worth paying attention to your gut and what it likes because it can be in charge sometimes. So if you just try and take back a little bit of our onus and think, right I know when I ate eggs, for example, I didn’t feel quite right. Then that’s. That’s a really good thing. And you don’t need anything fancy to do. It doesn’t have to cost you any money. You can even just keep the notes in your phone. But yeah, try and keep a bit of a food diary, but include all those other things as well.
Sam
Loads of really good advice on this episode. Thank you so much for joining me, Louise.
Louise
That’s my pleasure. Thank you for having me. Hope it’s helped. Fingers crossed for someone.
Sam
Thank you for listening to Can I Butt In. This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit bowelresearchuk.org where you can join our People and Research Together network or PaRT, read about our research campaigns and fundraising, or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.