BONUS EPISODE Turning Vulnerability into my Superpower, with Seb Tucknott and

24th May 2021

On the show this week we’ll be talking about Inflammatory Bowel Disease - but this time from a patient point of view.

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On this podcast, as well as sharing the research on nutrition, the importance of lifestyle medicine, we also have to be respectful of individual variation in experience as well as the different paths people can take to control their condition.

Today I’ll be talking with Seb Tucknott and Mesha Moinirad who wanted to share their stories with you - in the hope of spreading awareness about these two conditions and how different people may require different management.

Mesha is a  Personal trainer and rehabilitation coach. 8 years ago he was rushed to hospital with a burst appendix and since then his battle with health continued and he developed Ulcerative Colitis. And after years of unsuccessfully trialling medications with a poor response he had a stoma bag fitted and started blogging under the name  “mrcolitiscrohns”.

Seb was diagnosed in 2008 with UC that completely changed his life. It shaped the person he is to the work he does and the people he surrounds myself with. He ultimately was able to take  a diet and lifestyle approach to maintain remission in his disease and now runs ibdrelief.com which aims to improve care and access to information for patients.

Today we talked about:

  • Their diagnosis story
  • Their different treatment paths
  • Owning their conditions
  • Making their vulnerability a strength
  • Their future goals and aspirations with respective projects

Do be sure to check out Seb and Mesha on their social media channels and websites - all linked below.

Episode guests

Seb Tucknott & Mesha Moinirad
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Podcast transcript

Misha: I was given a pamphlet that looked like it was from the 60s. That was the kind of thing I was given and I feel like there's a huge area there that is just is confusing for people. Do I eat red meat? Don't I eat red meat? Do I eat this? Don't I eat this? And I'm like, you need to understand your own body. One of the things I always say to people is you need to create your own nutritional plan. If a doctor said to me post-surgery now, you can't eat nuts because it blocks up your stoma. Okay, well I can eat three, and then I can go up from there.

Dr Rupy: Welcome to the Doctor's Kitchen podcast. The show about food, lifestyle, medicine and how to improve your health today. I'm Dr Rupy, your host. I'm a medical doctor, I study nutrition and I'm a firm believer in the power of food and lifestyle as medicine. Join me and my expert guests while we discuss the multiple determinants of what allows you to lead your best life. On today's podcast, we're going to be talking about inflammatory bowel disease, but this time from a patient point of view. On this podcast, as well as sharing research on nutrition and the importance of lifestyle medicine from experts, I also want to be respectful of individual variation in experience, as well as the different paths people can take to control their condition. And it's for that reason I want to really put a spotlight on some patient experiences and patient stories. So today I'll be talking with Seb Tucker and Misha Moirad, who I wanted them to share their stories with you on a one-to-one basis. And I wanted them to do it purposely together because I want you to understand how different different variation can be in experience, in the hope of spreading awareness about these two conditions and how different people may require different management. Misha is a personal trainer and rehab coach. Eight years ago, he was rushed to hospital with a burst appendix and since then, his battle with health continued and he developed ulcerative colitis. And after years of unsuccessfully trialling medications with a poor response, he had a stoma bag fitted and started blogging under the name Mr Colitis Crohns. Seb was also diagnosed at a similar time in 2008 with UC that completely changed his life and it's shaped the person he is, the work he does, the people he surrounds himself with, and ultimately his he was able to take control of his condition with diet and lifestyle to maintain remission. And now he runs IBDrelief.com, which aims to improve care and access to information for patients. Today we talk about both of their diagnosis stories, their different paths, owning their condition. I think this is really important and it really did resonate with me because this is something that I had to work through myself over a decade ago. And and changing this concept of changing your vulnerability into a strength. Now it's definitely easier said than done. There was one moment on the podcast where Seb talks about how grateful he is for IBD, and there is no way on earth that he would have ever said that at diagnosis or over the first few years, because it is a constant battle, a daily struggle. And so for Seb to be able to say that now really does demonstrate how far he's come emotionally as well as physically. And I also wanted to talk about their future goals and aspirations with their respective projects, which are absolutely amazing. And I just take so much inspiration from these two. I really think you're going to love this podcast. Do give it a five-star review if you enjoyed it and do leave a comment. I always try and get through to them as well. Thanks so much for listening and on to the podcast. Misha, Seb, thanks so much for joining the podcast today. I'm super excited to talk about this. Like I was saying just before we started recording, one of the benefits of having this podcast platform and the social media stuff is that I get to reach out to some incredible people who are at the cutting edge of research and can really talk about the the latest evidence base and all that kind of stuff. But what I think is distinctly lacking from the conversations is a human element and patient stories. And that's why I thought you guys would be amazing to talk to. So I thought perhaps Misha, we could start with with you with regards to your story and what you do on a day-to-day basis and and yeah, and and what your sort of mission is, I guess.

Misha: Yeah, so I I basically it started off quite complex to be honest. In my early 20s, I was really fit and healthy, had no like health implications whatsoever. And then when I hit the age of about 21, I was in my final year of university and I just became really ill. I had three different doctors come down to visit me in my dorms at university just to conclude that I wasn't hung over. And it basically ended up being diagnosed after a lot of extensive testing with a burst appendix. But to get to that point, I was basically just sat in my dorm room for about a week without being undiagnosed. And you know, at first, you know, you listen to your doctors. I thought, it could just be, they were saying I had gastroenteritis. So I just took that gospel. And then it was only really when my dad came down from London, he took one look at me and said, you really don't look right. And in that small period of time, you know, I was going to the gym five or six times a week. And I was, you know, we were learning, I was studying high performance coaching. So the idea was we were applying our stuff we learned around nutrition, health, fitness, and then applying it to ourselves as students. So it was really interesting. I was in probably the best shape of my life then. He came down, took a look at me and thought, you don't look right. He took me straight to the hospital. And then basically all I remember from that point is walking into the hospital doors, taking one look at the reception desk, I remember the little cubby hole in Southampton hospital, taking a look in there and I just collapsed, I just passed out. And I didn't wake up for a further two and a half weeks. And basically what happened, they put me in an induced coma and they couldn't find out what was wrong with me. So they had to open me up via my abdomen. I've got like a nine-inch incision scar now. And every day they had to take me down to theatre and effectively wash out all my insides because it was so aggressive in there. And that was when I got diagnosed with a burst appendix. So that was the first part of my journey. And a lot of the pictures that I post or have posted in the past of my journey, I woke up about five stone. So, you know, now I'm about 12 and a half stone, but I woke up at five stone of weight. So that is how all the sort of initial things happened with my health. And then from there, I started basically having loads of toilet trips. And these toilet trips started with, you know, going to the toilet maybe once or twice a day, like normal, and then it sort of started to go looser. And I thought maybe from that first surgery, they may not have knotted something up inside properly. I thought maybe something's not right in that initial bit. And basically it wasn't. I started going to the toilet 40 to 50 times a day. And that's when I started to get worried. And particularly when I started to see blood in my stool, because a lot of the stuff I remember seeing when I was younger on the buses was if you've got blood in your stool, you might have like bowel cancer. And I was a bit like, you know, and I think being a young lad as well, I was quite concerned of coming forward. I was quite worried about how to approach it. So I just spoke to my mum about it and said, listen, this is happening. She was like, right, let's go to the hospital. And loads of extensive tests and I got diagnosed with ulcerative colitis, which is, you know, inflammatory bowel disease. And they said it was quite bad. But at this time, I was in my early 20s and I remember him sort of muttering the words about getting a bag and I just chose to completely ignore it. I thought, surely I can just take some medication, I'm not that bad. And then, you know, push went to shove and after taking medication for, you know, in short, for about four years and nothing quite working, I ended up opting to get a bag fitted. And then, you know, from there, that's when I started doing all the blogging, all the writing and sort of sharing my journey along that time, because I found that there was a lot of people, particularly around my age, that are worried to talk about, you know, their health implications, are embarrassed or ashamed to, you know, share these things, because, you know, the subject of poo is a bit is literally a bit taboo, isn't it? So, you know, it's a little bit like people don't really want to talk about it. And then yeah, it's sort of has all led up to that point. That's the main bit of my beginning part with health. And I ended up going back, I got my degree, which, you know, I'm really happy about because all my friends graduated. That was a really hard time. They all graduated. I had to take a two-year leave. And then I went back and studied, I ended up getting my, you know, getting my B.A. Hons in high performance coaching and nutrition. And now I do rehabilitation work. So I work with clients with all types of medical conditions, whether it be, you know, they have they've had a heart attack, so they're rehabbing from that. They had a hip replacement or they need a hip replacement. And particularly I work with people that have had extensive bowel surgery. So, you know, they just had a bag fitted or they need one fitted. And I do their rehabilitation work around that. So that's what I do as a day-to-day job now, really.

Dr Rupy: Amazing. In a nutshell, yeah, I know. I mean, there's so many parts of that story that I'd love to unpack a bit more. I mean, before we I want to bring Seb in and obviously Seb ask questions and vice versa. But when when did you have your burst appendix? How how old were you?

Misha: So that was in that was in 2013 and I was 21 years old.

Dr Rupy: 21. Okay. And and so you had your your burst appendix at 21, a harrowing experience where you you had to have multiple operations to to do wash outs. Um, and and when did you when were you diagnosed with um, UC?

Misha: So UC came about a year and a half after that time. So I initially got the, you know, the prognosis of a burst appendix. And it was quite interesting actually, because in the notes that the doctors gave when I left hospital, it actually said, um, indicators and showing signs of Crohn's disease. But they didn't actually tell me that upon leaving hospital. So I basically I left hospital, and bear in mind, someone at the age of 21, I didn't even know what bowel disease was. I didn't even know about illnesses, nothing. But yeah, they said that in my notes, which I thought could have been conveyed better from the hospital to go, listen, we found traces of this, you might want to further look into this. But I had no idea. So there was a link or a correlation potentially between my appendix bursting and me having this condition underlining the whole time, but I'll never know that.

Dr Rupy: Absolutely. I mean, that definitely seems quite an oversight by the hospital to not mention that and the fact that you didn't have any follow up until the diagnosis of UC and I mean, that yeah, that's definitely a huge issue right there. I mean, when you when you had the diagnosis, I mean, I'm assuming you had a whole bunch of tests, stool tests, colonoscopies, until you were actually given that firm diagnosis.

Misha: Yeah, well, I had a lot of a lot of blood tests. From, you know, from from my own education now I've learned over the time, I feel like there's a huge pocket there of still a lack of understanding. And, you know, I know the NHS is stressed, so quite often they can palm something off if they don't think it's, you know, within your age bracket or, you know, you've got a, you know, GPs have got such a vast amount of conditions to overlook. But, you know, from my appendix bursting, I had three GPs come and look at me at home, for that not to be diagnosed, I thought was crazy for one. You know, for that to be seen. So I remember for a long time, I was actually quite bitter about that. But, you know, mistakes are made, aren't they? It's only human error. But I had loads of blood tests. Blood tests showed that my my levels were all raised within my blood. So my, you know, that showed inflammation within my blood, but I didn't get an actual diagnosis until I had that colonoscopy. That was one thing I had to wait for, which isn't the most pleasant thing in the world, but I've had about 15 now, so I'm quite used to it.

Dr Rupy: Yeah, yeah. And um, I I want to get into a bit more about your your treatment and um, and you know, the the decision to opt for um, a colostomy bag, a bag, and we can we can talk about the different types of um, of stomas as well. Um, but Seb, I thought I'd bring you in here as well and just perhaps introduce yourself, your story and uh, the the incredible work that you're doing with the IBD community.

Seb: Certainly, thank you. I think I follow some similar uh, trends to what what Misha experienced. Um, I was I was also 21 when I was first experiencing symptoms. For me, my first symptoms was seeing blood in in my poo. Um, at first I didn't really think that much about it. I I went a few days and then it was still present. So I decided to go to the GP. Um, didn't do any examination or anything, just took my sort of symptoms and just said, oh, I think you've got a hemorrhoid and gave me some hemorrhoid cream. Um, I didn't take the hemorrhoid cream because I was like, I don't want to put my finger, pink finger there. Um, and then sort of things started to get worse. So I started to go to the toilet more frequently, started to become diarrhea. So I went back again. This time they referred me to gastroenterology. Um, but the waiting list was about, I think they said six or eight weeks or something. Um, and things sort of again progressed worse. I was living, I just finished university and I come back. So I was living at home. Um, my parents were quite worried and my mum ended up ringing 111 and speaking to them and they're like, you need to go to A&E. Like I was I think I was probably going to the toilet 20 times a day, um, losing weight, lots of blood. Turned up at A&E, was seen by a doctor and he took some kind of like basic sort of stats like my heart rate and blood pressure. Um, and at this time I had already done some research and I I said to him, I think I've got ulcerative colitis. Like from my research, I think this is what I've got. Um, and he turned around and said, he brought up some website and saw ulcerative colitis and he was like, no, you don't match the symptoms or you don't match all the symptoms. Um, and so they think you've got hemorrhoid. Again, no investigation. I was sent on my merry way. Um, quite frustrated leaving hospital then because I was like, I don't think I was taken seriously, but I kind of felt helpless. Um, I then things got even worse. I was going, similar to Misha, I was going 40 times a day, I can't remember, just all the time. Um, it was affecting my sleep. I'd lost like 10 kilos and again, I was only probably 80 kilos and I went down to 70 kilos and this is all within three weeks. So it was pretty quick. Went back to A&E again and this time I was like, I'm dying here. Like, what, like, someone needs to see me. And this time a doctor did a rectal examination, so he put his finger up my bum and he was like, oh, you've got mucus. Like, you might have ulcerative colitis. I was like, that's what I've been telling you for like over a week. Um, which is kind of a relief. Uh, got admitted to hospital, um, was told I needed to have a scope to see what was going on. Um, so I was sent for a sigmoidoscopy the next day. And this is the first time I've ever really been in hospital or stayed in hospital. It was quite a scary experience. I had had this the sigmoidoscopy. I could see clearly, like they didn't put you under. It was like, I was like, do you give anything for this? And they were like, no, just some Vaseline and put your knees up. And I was like, okay. Um, and at 21, that was quite uh, I mean it's I can imagine, I can imagine it being super embarrassing as well. I mean, the fact that, you know, you didn't want to even want to take the hemorrhoid cream when you're in your early 20s and then suddenly you're you're faced with a telescope that has to be introduced into your into your rectum. I mean,

Misha: Quite often in those times as well, it's not just one person there. I remember having like there was about four or five people in the room and I was thinking, this is I didn't expect it because I think for for doctors and stuff, it's very routine, like this is how they do it. But when you're a young lad or or a young woman and you go into that environment, it's it's quite stressful.

Seb: I remember on sitting on the um, uh, what's it called? I can't remember what that Rupy is that's medical assessment ward.

Dr Rupy: Oh yeah, yeah, yeah, yeah. We we have different names depending on where you are. So sometimes it's AMU, uh, MAU, yeah, yeah.

Seb: Um, and this uh, I was I was single at the time and um, this uh, rather attractive lady doctor came around and was like, I need to examine you. And I was like, oh Jesus. You're gonna you're gonna you're gonna buy me dinner first. Um, and I I remember after the scope, I remember because Misha, you'll know this from having had one, like you you can you can see the screen, like you can see what's going on. And I'd seen this, I could see, I could see I had ulcerative colitis and it came up. And I remember leaving the theatre and and breaking down in tears, both of like relief that actually they'd like they knew what they were dealing with now, but also like masses of fear because I'd read a lot of stuff about how it really impacted your life and how it would limit lots of different things. And uh, and then I ended up spending um, nine days uh, in hospital. I was on intravenous um, steroids to try and bring the information under control. Um, I was told I had surgeons on standby. They were really worried that my colon was in a really bad state and um, that I was very close to to requiring emergency surgery to remove my colon. I remember at the time being really um, frustrated, scared, like didn't know what's going on. Frustrated that this doctor a week ago hadn't taken me seriously because I was like, if I do lose my colon, like what what would have happened if you treated me a week ago? Um, and really it was the last thing I wanted to happen. Like I was like, I don't want to do that. But interestingly, I ended up on they didn't have enough room on the gastro ward and ended up on the MPT ward. I was talking to an old guy there who just had his leg taken off and he was like, I'd much prefer to have my leg taken off than my bowel out. And I was like, I don't know. I think I quite like my legs. Yeah, yeah. But certainly over the years now and like all the great work that Misha does and everyone else in the IBD community, like surgery doesn't scare me now as as much as it did, but it was certainly still I felt it was a a last resort or like I didn't want to go down that route. But yeah, that was kind of my diagnosis journey.

Dr Rupy: Yeah. Oh my god. I mean, like, you know, as an early 20 year old, I can't imagine how scary it was. And, you know, I have a very small insight into the vulnerability aspect and the frustration aspect for from when I was diagnosed with um, atrial fibrillation as a as a doctor as well. So, junior doctor, three months onto the ward, suddenly starting having atrial fibrillation episodes, going at 200 beats per minute. And the the first time it happened, I was on shift and I had to be taken out of my clothes, put on a gown, hooked up to a cardiac monitor. And um, I I remember vividly and I I've said this a number of times on the podcast as well, so apologies if people are hearing the story again and again. But I remember vividly being wheeled down the corridor and loads of people, random people just walking past, not paying any attention to me whatsoever. But the embarrassment of that single episode of just being transferred from one ward to the X-ray department has never left me. And I I I always empathize when people even have to don a gown to do anything and and walk around the hospital because you we don't experience what what that's like. And that alone is very embarrassing, let alone if you have a telescope introduced into your bottom.

Seb: Yeah, I remember I remember afterwards as well because they they have to pump air into you to kind of inflate the bowel so they can see what's going on. And then afterwards you're just full of air and then like, um, I ended up soiling myself on the um, on the wheelchair that they were wheeling me around in. I was like so embarrassed. I was like, my parents are there and I was like, I couldn't tell anyone that I just, well, let out a lot of wind and uh, yeah, yeah. There was some extra stuff with it.

Misha: But yeah, I I remember I remember just being in that situation of feeling like extremely vulnerable and like everyone was looking at me. You know, like everyone was because I was like a skeleton, like really drawn. And it's the same when you're suffering with IBD, it's like all your nutrients is pulled out of you and you look very unwell sometimes. Like I would and that's quite difficult for people to understand, like because at the beginning when you're when you're physically unwell and people start to understand that you're unwell, I remember going for like a try and go for a social gathering with my friends and people would constantly ask me like, oh, are you okay? Are you okay? Are you okay? And then after a period of time, people almost get bored of you being ill, if that makes sense. So you can be you can be ill for an extended period of time and people will understand that. And after a certain period of time, people are just like, you're just that ill person. And I remember that I found that really hard with living with chronic illness, just being ill and sick all the time. It's tough.

Dr Rupy: When you had your UC diagnosis, um, I remember you just said there that you know, you felt quite arrogant or you know, waking up and you used to be probably quite body confident as well, right? I can imagine, you know, especially if you're going to the gym and you're studying nutrition. Um, what what was the next four years like for you, uh, living with a chronic disease and and perhaps even doing a bit more research on it as well and and the the more you realized, you know, what your life was was going to potentially be like going forward.

Misha: Like initially, like horrendous. Like to be honest, initially I I thought I didn't know because you're living very much day by day and you're relying on things that you don't understand. So I would just be given these long words that might have been might as well have been written in Spanish, um, of medications I was taking. I was like, I have no idea what these are. And I daren't read on the packaging the long-term effects because otherwise you wouldn't put a single thing in your body. It was very much it was very much that kind of situation. And yeah, I guess there's there's a there's a turning point of where you're struggling mentally for a period of time and then it's like the physical part of the condition knocks you as well. So you've got the combination of like, okay, this is really hard for your mind to come to terms with, like I'm living with a condition that potentially the only other people I've seen diagnosed with it are 50 years older than me. And particularly when you're in hospital, I found that really difficult because everyone on the ward, you know, these conditions are more related to people in their 50s, 60s, 70s who have got like bowel cancer and stuff like this. And I was just sort of sat there like, okay, who do I who do I relate to in terms of this? You know, and that that's really, really difficult. And that's that's one of the I think mentally I struggled more at the beginning than what I did with the physicality because I knew once I could once I could get control of this condition, I would be able to overcome it. But it was getting the control in the first place.

Dr Rupy: Yeah, yeah. What what was your support network um, like during that period?

Misha: I've got an amazing family. Like my my family are incredible. But initially I started looking in forums because, you know, you can have the you can read all the medical research in the world, but you can't like relate to that. I want to know, I want to know like, okay, so if I'm having this discomfort, does anyone else got this? That was, you know, that was the initial bit for me. Initially, I thought the best place to look was going to be forums. I thought you're not going to find a better place than other people that are living with it. And then after a, you know, a very short period of time, I came to realize it was just full of a lot of negativity. So there was like quite a lot of people that are obviously unwell and struggling with their conditions and they were putting that on these forums, which in actual fact, instead of making me feel better, it was making me feel more concerned because they were like, you know, someone would say, what's what's living with a bag like, which I knew was the next step for me. And people were really like, some people were putting things on there that was shocking me and I was actually getting scared. I was thinking, oh my god, I was expecting to find like some positivity on there. So then I thought, you know what, I'm I'm coming out of these. I I came out of all the forums. And I thought, I'm going to start blogging myself. And not for anyone else. It was literally I had a a web page, I think it was like a Wix. And I would just write, yeah, a Wix, like a really old one, yeah. And I I was just I wasn't it wasn't live, it wasn't no one could see it. I just used to write on there how I was feeling on a day. Um, a certain thing I struggled with, um, if I ate something that had a bad implication, I would write it down. And then I remember some I remember it came up on it might have been like Crohn's and Colitis UK forum. Someone asked a question and I thought, I know that. So I thought, I'm going to write that. And I started doing that more and more on people's stuff, just purely out of my own experience. And then someone wrote on there one day, you should start like a something yourself. And I thought, you know what, maybe I will because it's helped me so much this sort of channeling my energy and all the problems I was having. I'm going to start doing that. And then within literally, I think it must have been the first couple of months, I had like a couple of hundred followers. And I was like, oh, this is really cool. Like I don't and at this time, Instagram and blogging and stuff wasn't really a thing. I didn't really follow anyone. So I was like, I was just thought I've got these random 400 people following me. Like this is really cool. Um, and then I carried on doing it and it sort of grew and grew and grew. And then and then the one thing that changed it was when I started after I had that surgery and got a bag fitted, when I started doing more like actual physical pictures of me showcasing my bag. Um, and then it sort of went from me showcasing my bag and then people were asking me questions like, what actually is that? Because a lot of people still don't understand what a bag is. They understand like the concept of a bag, like they're like, oh, I've seen one of those, but they don't actually understand like what goes in that hole. So then I thought, I kind of want to open the conversation up about that because no one was really talking that next phase. And then, yeah, that's when things really went from being like, you know, having a few hundred followers to like on Facebook now, something like 60,000, you know, on Facebook alone. And then it's just sort of grown from there. But I think for me, one of the, yes, my family and support network, that was all incredible and friends. And I was doing 50 hours of personal training whilst going to the toilet 50 times a day. And none of my clients left me when I went in for that surgery. They stayed with me, all of them. You know, which is incredible. But it's kind of like all those, I've got a good connection in terms of people that support me, but the online world has helped me loads because I've managed to channel all of my troubles into that. And then whilst helping other people, but getting so much back from it as well, which is amazing. It's wicked.

Dr Rupy: Yeah. I want to pause your story there actually. And I want to come back to your decision about um, the the bag and and we can talk a bit more about the nuance of the bag. But Seb, I we reached your story up to the point where you finally had this diagnosis that you were dreading. You'd already done a bit of research about ulcerative colitis and the implications of that going forward. What what happened what happened next in in your story?

Seb: So I was in hospital kind of told what I had, wasn't really given much information at all, just you've got ulcerative colitis. I remember an IBD nurse coming around and saying, oh, I um, doing some research and I she believed that there would be a cure within, she said 15 to 20 years or something. And that really stuck with me because that and I think I know she was probably trying to be positive about it and saying like, like they're working on things and things will get better. But for me that was then like, oh, okay, if there's side effects of medications, is there like if there's impacts on my life, actually, I can kind of ignore it because there'll be a cure soon. Um, so I ended up probably not taking my health as seriously because of because of that being said to me. Um, I didn't I just kind of gone with my life, I think. And that's what again, the doctor said, just like, you've got this, take these meds, go and go on with your life. And I just just gone with it. I would still flare up, um, quite frequently. Um, every time I tapered off my steroids, I would flare up. Um, I would end up bleeding again, going to the toilet a lot. Um, going back on more steroids and just that cycle just constantly. Um, and I hadn't really met anyone else with the disease as well. Um, I didn't really go online. I wasn't I mean, I was on Facebook, but I didn't even think to go and look at anything else on Facebook. Um, and it must be quite like Misha was saying about when you do start going in these groups, like there's a huge mix of opinions on there and like positive stories, but also some negative ones. And I think in a way, I didn't get introduced to that till about 2012. So I'd already been living with the disease for about four years. And I do wonder if by living with it for a little while, it then made it I was I'd sort of dealt with some stuff already rather than being thrown into this environment. I think now maybe are people jumping straight into these places and that might be a really positive thing, but it also quite might be a negative thing. I don't know, Misha, what your thought is on that, like, there's so many positive and negative of social media and I think it's a it's a delicate area and I think we need to use it as a tool, but it can be

Misha: Unfortunately, I think you're always going to have when you're dealing with people with medical conditions, some people have, you know, they're not happy that day and, you know, the internet, you can just chuck it out there. And sometimes you might not actually mean what you say, but the implications and this is something that I get really frustrated with online is, you know, sometimes I'll get some horrible comments on my posts, but it's because like, you know, I release a video and over a million people will see that video from all over the world. So you're not just dealing with people, you know, with the same same belief system, they're on the other side of the world. Um, but it doesn't bother me because I'm quite hardened to that. Like Seb said, you get hardened to stuff like that and you realize that some people don't understand, but it's the people that are seeing my post and then they're reading it because it it reminds me of the time where I was like, when I was reading what other people were saying and it was really affecting me. Um, and it was making me really worried. So yeah, the like you said, it's it's sort of a double-edged sword, isn't it with the internet? It can be amazing, but it can also be terrible at the same time.

Seb: And and do you think Seb, you know, during this period of time when you were having cycles of of flares and going back on high dose of steroids and then tapering down and then having flares again, I mean, it sounds like a very frustrating experience and and without that sort of strong support network, I can understand why people just quite easily slip into um, depression, uh, and a really unsteady mental health state. Would you say that you were you you were in that category or or close to it or?

Seb: I think I've been fortunate that I don't think I've ever been really been depressed from it. Like it's like it's definitely had some big effects on my mental health. I think the thing I struggled with the most was toilet anxiety. So needing the toilet all the time, like even doing something like we're doing now, I would be absolutely terrified that in a minute I'm going to need to run to the toilet and what's going to happen. So that was a big thing for me and and having accidents, I would um, I I don't know how many times I've I've soiled myself. Um, and that's hugely embarrassing and and it never stopped me doing anything. I'm aware of a lot of people that that then they become fearful of even leaving the house and I was determined for it not to stop me, but it still like it's hugely embarrassing and I would have to wherever I'd go, I would carry a spare pair of boxes and trousers and even socks. Like when you when you let go completely, then you you're surprised where it all ends up. Yeah, yeah. There was some extra stuff with it.

Misha: I I find I find that interesting, Seb, that you, you know, you you haven't found it that mentally taxing because I I would say I struggled a lot mentally when I was, I think the reason why I struggled the most mentally was because there's no means to an end when you're living with a chronic illness. It's sort of like it's just constant. So you're you're, you know, you're constantly getting hit back down. I remember being in in a situation where I'd already been in hospital for about four months, going in, getting IV steroids and then just having to stay on the ward because they're worried that I was going to perforate. And then I'd be like, they'd be like, right, you're going home on Friday. And I'd be like, I'll be so happy. Like I get to just leave this like prison. It literally did just turn into a prison. And then Friday would come, I'd go home, I'd straight away go to the toilet like 30 times that day because, you know, the IVs and everything had come out of me. And then I'd just sit there, my I remember sitting in my mum's bedroom looking out the window, just crying for like a whole day. And then the next day I'll be back in hospital again. And I think that that I found really frustrating. Like I was watching my friends graduate, watching people like progress in their life because in your 20s, that's like a really like pinnacle time of like setting up a business or, you know, joining starting your career. And I felt like that was just completely stripped from me. So I remember mentally I was thinking, is this like going to be forever now? Like, is this the way I'm going to have to live? And then I started just giving up on everything. And then I just didn't go out. I remember just being like a recluse. I didn't talk to my friends. And yeah, I really struggled mentally. And even though I've got an amazing support network, it just still I felt more alone than ever, even when you're surrounded with people. It's horrible.

Seb: I think you so I reflect back on it now and realize how much it impacted on me. But at the time when you're living in it, it's kind of all you know. So you like that is your normal. Um, and certainly when you had those ups and downs, right, like it would start to get worse again and I would be sat on the toilet and I and I would cry on the toilet and be like, like, when is this going to end? And like that there were some definitely some low points there. Every time I sort of tried to pick myself back up and then something would help turn it back the other way. So whether it was going back on medications or something like that, that would help give me some hope that, okay, I can I I knew I could get better when I was taking steroids. So it was kind of I always had that thing to turn to.

Misha: It's funny you say that though as well though, Seb, because I remember finding that word infuriating. When I go to the hospital and they'd say, right, we're going to pop you on some steroids again. I was thinking, like, you know, it's like the only answer they have for you. It's like, there's your steroids, go go and take these and you'll be fine. And I remember thinking, there must be there must be something else I can take.

Seb: I mean, that that's what was frustrating. And I think for me, I started to notice patterns. So I'd started to notice like I run my own business. So I I would joke and I'd have a flare up every payday because it's like money would get tight and I wouldn't have enough money to pay people. So like that would be my flare up. And I remember saying to my consultants at the time, I was like, I'm pretty sure stress is having a big impact here. And I remember one doctor just saying, oh no, that's a load of rubbish. And I was like, I'm pretty sure it is. Like I and now we know research that that's most definitely true. Um, yeah, that was frustrating as well. I never feeling like I was listened to. And like Misha said, like you just don't have any options. It's kind of like you've got a drug or maybe another drug and there was not much else. And for me that the thing that kept me off steroid or made me try and really come off steroids because I was just like steroids kept me okay. I didn't I had side effects, but I probably didn't take them as seriously as I should have done. Um, or they didn't impact they didn't impact me as much as going to the toilet 30 times a day. For me, it was I watched the 2012 Olympics, was inspired to get back into athletics. I'd always wanted to, when I was diagnosed, I was told that I wouldn't be able to exercise as much anymore. And that always kind of stuck with me and like frustrated me. I was like, well, but there was times where I would try and exercise and it would I'd be too tired or like just to add some context, Seb, you were a semi-professional footballer. Is that right?

Seb: Not semi-professional, but I used to play. I I I played at a high level. County level. County level football. Um, but yeah, I watched the athletics and I was like, oh, I really fancy doing athletics. And I I'd been a runner when I was younger and I look back and actually the most thing I the thing I enjoyed the most about football was just running around like a headless chicken, running past people. Um, so I got back into athletics and realized actually I was quite quick and I was running at quite a high level. And then we're starting I got ahead of myself and I was like, oh, I could like run at a high level and stuff. And I was like, oh, but I can't because I'm on steroids and that's a banned substance. So it was it was interesting that it wasn't my health that was the motivator for me to want to try and come off steroids or find something else. It was actually the athletics that made me do that. And that was when I started to explore other things for my health and and that was like the beginning of my health journey.

Misha: And Seb as well there, when you were taking, you obviously taking steroids, were you taking any other medication alongside that, like immunosuppressants or?

Seb: So I was on I was on Mesalazine the whole time. So that was I was given. Um, they wanted me to come off the steroids, so they put me on Azathioprine, which is a immunomodulator, immunosuppressant. Um, that made me feel terrible. I know it works really well for a lot of people, but for me, I felt really run down. I was getting colds all the time and I don't know whether I was also scared of the drug. Like I I'd read some bad stuff about it and knew some of the side effects. So I think there's almost like a negative placebo effect sometimes with some of these medications. Um, so I had to come off that. I tried six mercaptopurine, which is another form of thiopurine. And yeah, so we tried a few different things, but for me, I think biologics weren't indicated for ulcerative colitis yet at that stage. So I didn't really have many other options. And I think sort of surgery was kind of becoming that next option, which I also didn't really want to go down at that time. Um, and like I said, I'd started to notice different things affecting me like stress. I'd noticed certain foods were sort of causing some problems. So it made me sort of intrigued to like, actually, you know what, is there more that I can do with this? And that's when I started to join, I joined Crohn's and Colitis UK set up their Facebook forum. And I was like one of the first kind of people in there. Um, and started people would talk about stuff and I'm like, oh wow, like it was the first time I'd ever sort of spoken with other people with the disease and people would be like, oh, I've done this or I've tried this or I've experienced this. I'm like, oh wow, like other people experience this stuff. And that was it really sparked my interest. I if someone said something, I was like, that's interesting. I want to learn more. I want to maybe try it myself. Um, so I remember one of the first things someone saying, oh, I've cut out tap water and that's made a big difference to me. And I was like, okay, that's interesting. So I did some research, tried it myself, it seemed to make a difference. Um, my belief there, I think there's a lot of chlorine and things like that in the water, maybe that disrupts our gut microbes. Like I don't know, it needs to be put through a trial, but it felt like something easy to do that I just switched to filtered water. Um, so that kind of started to give me hope that actually, you know what, maybe I can start to have some control on this and and and start to make me interested in what, yeah, what more could I learn? What other things do people know that I don't know that I want to like just absorb everything and see what happens.

Dr Rupy: I I want to pause there because I think this is kind of where I think um, both of your stories, I mean, they're remarkably similar. I didn't realize how similar they were until now in terms of like the time of diagnosis and you know, your your your journeys and stuff and the number of years it's taken. But um, this is where um, your your treatment is uh, different in that, you know, there's no right or wrong answer, but certainly there are there are different methods and it's all based on the individual and all the rest of it. Um, but before we go into that, because this is kind of where the stories get a little bit lighter and there's a bit more, you know, positivity, I guess in both of your ambitions and what you're doing in this space. But um, I just wanted to to double tap on the frustration uh, element there. I was um, when was it? It was last week now, saw a patient come into ED and this is during pandemic times, right? So already had loads of stress this year, um, a number of different flares, uh, she she was a a young patient. I don't want to get into too many details for confidentiality reasons, but young patient, uh, long-term sufferer and I remember we were just going through the history and stuff and you know, the last time she had a flare, the last time she was admitted, uh, her treatment, which is quite similar to actually to to some of the medications that you're on, Seb. Um, and in the middle of me taking history, she just broke down crying. And it was just this pure frustration of not again, not again do I have to keep on coming back and then having the IV steroids and being admitted and I don't she didn't want to be here. She was just so frustrated. And and like we tried to create a treatment plan where she could actually come back as an outpatient, but her HB was way too low and her albumin was quite low as well. So we ended up uh, giving her IV stories. But I remember just speaking just giving that extra moment to to empathize with that. And it's remarkably common and and both of you guys have have have talked about that in terms of your own journeys as well of that just frustration of having to come back, particularly when you're young. And and it's it's very unfair because like you were saying, Misha, you know, these are times where you're building yourself up, you're establishing your personality and your your businesses or your interests and and careers and, you know, it shouldn't be happening and it's yeah, my my personal experience of it is

Misha: I I've I also found frustrating is is the the passing on from doctor to doctor and the explanation of your story every time. I was thinking, are you serious? I'll go in, I'll be like, what are you taking medical notes for if you don't know who I am? And you know, when you've got a very complex condition, having to explain that story over and over was probably one of the reasons why that girl broke down, because she's probably said that story to about 70 other doctors, because I've done that same thing. And I'll never forget the one doctor that I liked the most, um, Dr. Dr. Hovel, his name was. And he was he was in my hospital when I first went there and I was like, straight away, I was like, we clicked. I was like, you can talk to people because one of the doctors that I spoke to originally, I was like, I left there petrified because I had no idea what he was talking about. And then I went down the hallway and spoke to the stoma specialist nurses and the nurses that deal with like, um, actually it was before I even had the stoma talk, it was just the specialist that dealt with, you know, people that are living with bowel disease. And they would have to break down the notes so I could understand them. And I was just like, I just want someone that I can relate to. And this doctor, I remember was leaving. I've been with him for about a year and he was moving out of the catchment area. And I sat down and spoke to him. I said, listen, I said, I can't actually deal with going to another doctor. I need to stay with you. And he offered me to go with him. And one of the reasons, and I'm not sure if he's allowed to do this, so don't stitch him up. One of the reasons why he said is because the funding where he was going was a lot more significant than what the funding was at the hospital that I was currently at. So I could get hold of drugs like Infliximab and Adalimumab and try these other medications to potentially make my condition better. And I needed those drugs. So I ended up moving with him, um, out of my catchment about an hour away and it was well worth it.

Dr Rupy: Yeah, yeah.

Misha: Because that one that one medication I took being Infliximab put me into remission for a year. And bear in mind, I was going to the toilet 40 or 50 times a day, which was just water and blood. Yeah. And after two infusions of Infliximab, I had the first solid poo I had in over four years. And I was like, I remember looking at it in the toilet like, amazing. Celebrating time. Yeah.

Dr Rupy: It's a bit, you know, it's amazing what what, you know, we take for granted. Like the fact that, you know, a normal poo. I mean, it's something we wouldn't talk about, but it's, yeah, it's crazy. And just, you know, it's one of those things why I just think it's so important to have a gratitude um, journal every single day because it's the small things that you you take for granted, you know?

Seb: From having gone through health journeys which like we have, like it it does make you a lot more appreciative of the things around you and the people in your life and like small things like being able to go and walk and not have to worry about needing a toilet or actually those things you you really value a lot more that you really would have taken for granted before.

Dr Rupy: Absolutely, yeah. So what were you having anaphylactic reactions to some of the medications you were having?

Misha: They couldn't tell me because what they were saying is your bowel kicks off certain signals when it's, you know, really inflamed. So I think it was a combination of like my body being really confused and just sort of attacking itself all over. Um, because effectively as far as I'm aware, like Crohn's disease and bowel disease in the most like simple form is your body attacking itself, isn't it? It's your immune system's in overdrive basically and it's attacking the organ. I think my body was doing that to all body parts. It was just like if I, like an example would be, it's really odd, if I were to knock the back of my hand or even flick it, it would go red, a small dot would appear and then my hand would swell up the whole thing. The worst one was when I wore flip-flops once and it went between my toes. Um, and my my toes in between swelled up. Actually, I tell a lie about the worst one was when my penis swelled up. But that's a whole other story. Yeah. And I that was the worst day ever.

Dr Rupy: Oh god, yeah, I can imagine. Yeah.

Misha: The whole thing swelled up and I had to show the, bear in mind I'm only 22. And I thought, I thought, I'm feeling really uncomfortable. I knew that there's a certain feeling when you get these sort of um, shocks in the body, it feels like a burny feeling in the bone. It felt really deep. And I remember once I got it because I used to get it in my throat and that's when it would swell up. But I got it in the in in my penis and I was thinking, surely not. I thought things are bad, but this is going to take it to, you know, the next level here. And it did, it swelled up. Um, huge. I took some pictures and sent it to my doctor and we were laughing about it then a week after, but you know.

Dr Rupy: Well, it's good that you can laugh about it now because that, yeah, I mean, that's going to be crazy worrying at the time. I mean, you know, it's interesting, just as a a small, we'll be digressing a bit. Yeah, inflammatory bowel disease can prevent present in many different forms. People report obviously things like fatigue because of the blood loss, but also skin disorders, brain fog, um, a whole bunch of other inflammatory reactions. Um, and and it's associated with a number of other conditions as well. Um, but but at this point, like I'd love to unpack a little bit more about your story, um, Misha, and your decision to um, have the surgery, um, and and your feelings before you made that decision and after and and I mean, now, you know, I I look at you, I've only known you since having the the procedure and you present yourself as like someone very confident. I mean, for the listeners, you're wearing a pink jacket, which I absolutely rate at the moment. It's you've got a lot of style and clearly, you know, before you're you're into um, uh, nutrition and health and working out and looking good and all that kind of stuff. So I can imagine there are a lot of mixed feelings uh, going into this. But but what what don't I let you you tell the story?

Misha: I think, you know, if you told me before I had my surgery, if I rewound back to when I was 21 and that that first consultant said, the probability of you getting a bag is quite high, I was in complete denial. But when you've been through like the sort of all the health implications I had for like four to five years of just battering over and over and over, my decision to get a bag became very easy because I thought there was there was, you know, there was times where like I thought, I'd love to just go on holiday, like, you know, I just want to go on holiday and have no no problems. Like, can I do that? And I thought, you know, there was numerous holidays I had to cancel because I just couldn't, I was too ill and then I had to just cancel it and it just didn't work. So when I actually came to the point of where I thought, right, I'm ready for this surgery now. And the story, I've got to tell you this story because it's it's epic. And it's basically, I remember I sat down with my partner at the time and I said, right, I'm going to get this surgery. And I remember sitting with my mum as well and saying, I've I think I've made my decision now, I want to do this. And my mum always came to every single one with me, um, every single meeting I had with my consultant. And we went in, um, and I said, I think I'm I think I'm ready now. He was like, because basically I was on the last trial drugs and I didn't want to take any more. And I said, I think I'm ready. And he smiled, the consultant smiled and said, I kind of thought we were at that stage now, but he was like, I wanted you to make the decision yourself. I didn't want to push you into anything. He stood up, he walked across the corridor, he got the surgeons from across the corridor, they all came in that minute. And the surgeon looked at me and he said, if you're serious about doing this, I'll do it in my overtime on Saturday. And I was like, whoa. I was literally like, yes, so that was literally five days time. Um, and I remember thinking, wow, and the one thing that stuck in the back of my mind is my mum's going on holiday on Thursday. So my mum was going to Sri Lanka. So I had to, I went out in the corridor, I said, can you just give me a minute? And I called my mum and said, you know, I said, do you mind if I have this, like, well, I'm obviously going to have to take this surgery because if you're living with Crohn's disease or bowel disease, you're put behind people with cancer. So he was saying, if you don't get this done now, you're going to have to like potentially wait six to eight months. And I thought, I have to do this now. And I I thought straight away, I thought, I'm going to have to do it. So yeah, I opted to get it there and then. And yeah, that was that was as simple as that. So I think if, you know, in the past, I found, you know, getting a bag and I can see why people are extremely worried about getting a bag because it's a huge surgery, it's life-changing surgery. But um, for me, I've been through enough like hardship to go, this is my only option now. I feel like I've been sort of pigeon holed down this to get my life back.

Dr Rupy: Yeah, yeah. I mean, what were your thoughts immediately afterwards and and obviously the the post care and stuff like that and and you know, what what again, how did you you lean on your support network to support you through that time and and and going forward, you know, now, like, you know, you talk about it and it's fantastic to have you as a spokesperson for stoma companies, you know, you're doing amazingly well on social media and the Q&A and all that kind of stuff. So what what is what is the the current state of like your your kind of work now and your uh, your your work in your profession as well as where you want to take this going forward?

Misha: I think, you know, the whole the whole like sort of thesis of why I started my platforms is to help people. I'm like a I love people. It's what I've always loved to do. So no matter what I've done in terms of a job, as long as I'm connecting with people, like this is why this doing this like we are right now is not the same as if we were there in your kitchen having some food. You know, I like I like being with people and interacting with people. So I knew that, you know, I could do that where I am now doing personal training and rehabilitation work at the club I'm at. An amazing club called First Class Fitness in Weymouth and it's, you know, it's it's like a community, which is amazing. But I wanted to translate that, that that sort of specialness we had there into the online world. I wanted to connect with people the same way. And you know, I think between my platforms now, I've got something like 500,000 followers. That's five like 500,000 people. That's a lot of people. You know, and it's it's amazing to be able to actually like I felt like I physically know these people. I've got, you know, you have on Facebook, you have your top fans, don't you? And I've got hundreds of top fans that will tune in every week when I do a Facebook live bag change and it is incredible. I get people now send me pictures like once a week now I feature young children on my page. So, you know, I put a video up the other day of a collection of all the ones I've done. It's had a million views in like 20 hours. It's like crazy. But it's it's trying to bring like all parts of the community together. And that's how I really have always treated my online stuff and I think that's how it's naturally grown. If you can give people value, they will come back. You know, and I've done that from day one, just literally because I knew what it was like to be in a situation where I was completely helpless. And that's a horrible way to feel, you know, to have no one to relate to. So that was like the online stuff. And then I wanted to basically these bags, like this was the the bag that I picked the first ever bag I picked when I had my stoma fitted was one of one of these. And I thought, I didn't know anything about this company. Like I literally knew nothing about it. Um, and it turns out they're the biggest organization for making stoma wear products in the world. Like just coincidentally, I didn't even know. I reached out to them and said, is there a chance that I could do something to like give back to the community? Like, you know, whether I could test products or, you know, give sample reviews or anything to make people help people pick a better product to match their body type. Um, I got an email back saying, would you come to the Peterborough headquarters? So I went to the Peterborough headquarters. And then the week after that, they flew me out to Copenhagen and now I'm on the front of their building in Copenhagen. I'm basically their global ambassador. So I go to like, I done a conference last year, which was in front of about 7,000 people, which was and I got to be interviewed and interview the CEO, which is incredible. So those kind of things like, you know, do I do I feel like any sort of like badness about getting my condition? In a way, yeah, like if I could take it back and not have a medical condition, like, yeah, probably would do that. But what this condition has enabled me to do in terms of how much I love helping people has opened like I wouldn't be here right now talking to you. You know, it opened it's opened a lot of doors. And then apart from those online things, I had the idea when I first got diagnosed, obviously, my job's rehab. It's what I like love. I love anatomy and physiology. I love like the body and how the body works. And when I had that surgery done, I thought this is dangerous. And not only dangerous in terms of, you know, um, injury, but for herniation and prolapse, I was like, there's got to be some sort of statistics on these. I thought it must be crazy. And the more talks I done with Coloplast around the country and the more people I connected with, like we ran a charity event where we had loads of spokes people there, Seb was there as well. Um, and basically, I come to realize that so many people were having prolapses and herniations after surgery. So they get they'd have an open wound, whether it be keyhole or what not, but the minute you open the abdomen wall, you've created a a weakness in the abdomen, like it's just simple, isn't it? Like that's like basic logic. So I thought for all these people that are getting prolapses and hernias, the stuff that was on the market, I thought is like from the 60s again. I thought this needs to be brought to a time because I like clothing. I like I've always liked fashion. I like feeling good in clothes. And one thing it wasn't that I was ever ashamed of my bag, but I didn't want my full bag swinging around underneath a tight top if I went for a few drinks with my mate. You know, it's not it's not the look I really wanted. So I set to design a type one medical product. Um, it took me two years to design it. Um, and it was a lot of like connections, a lot of favors, a lot of like getting stuff done. And like early investment, you'll know if you're starting anything, how hard it is to like develop a book. Like that's really hard, isn't it? And these things have to be tested as well, which is C marked and everything. And then now, just before lockdown, I managed to get it together. I ordered um, at the beginning of the lockdown, my first like 300 because they're bloody expensive um, to produce. And in that time, I've sold three batches. So basically there's over 1,200 people living with a bag with my belts on. And it's enabled me to produce a further 2,000. So now it's starting to scale up and become like a proper business now, which is amazing because I've basically tackled something that was really bothering me, you know, and then now get to give it to people and go and you know, when you get anything like you'll know with any of like your stuff, Seb, what you do, when someone comes back to you and goes, what you're what you've done has literally completely changed the way I thought about that or the way I'm reacting about my condition. It's like you you don't get a better buzz than that. You do not get a better buzz than that. So yeah, that's what I'm doing online is like incredible what I'm doing with Coloplast is like great. But to get to the point now where I can I've almost helped me develop a business that helps people is like, yeah, I couldn't have asked for better really. It's amazing.

Dr Rupy: That's amazing. And I I I love this because and this is why I wanted you both on at the same time because, you know, both of you have owned your condition and you're making your vulnerability your strength. And Seb, what you're doing with your business and and your IBD community as well is is as inspiring. Uh, I wonder if you could dive into a bit more about how you you started that and your online presence and how you utilize your existing skills to to what you want to do for the for the foreseeable future.

Seb: Yeah, certainly. So I mean, my my professional background was I ran a, still kind of just about do, run a web design and and marketing company. Like Misha said earlier, the the amount of information given to patients was pretty poor and and really like sporadic and and there wasn't that much online as well. And I so we set out and set up IBDrelief.com. So that was a web an information website and we we decided to put lots of articles on there and sort of create content that just wasn't really out there. And and I mean, that's grown massively. We're now getting getting over 100,000 people a month visiting the website from all around the world. So it's amazing to have that resource out there. The thing that I'm super passionate about is there there's a lot of people now in the kind of patient advocacy space, um, like Misha and like doing an amazing job of like raising awareness and like empowering people to sort of talk about their conditions sort of public facing. And I've never kind of quite been that person. Um, so for me, I've ended up working more with kind of healthcare, I work with pharmaceutical companies and and I'm trying to come at it from from the other angle as well. So I think like Misha and all the people in the in the in the IBD community are like doing amazing stuff on the public side. Um, the big project we're working on at the moment is a is an education platform. So the concept here is to empower the healthcare professionals to actually be able to prescribe bespoke content to patients, whether they're going to have a new medication or go for a procedure or, um, we're building this incredible library of of of content. Um, and that's going to be delivered through a mobile app and and a website platform. And we're just we're trialing that in pediatrics. So we're testing that with Adam Brooks Hospital, um, in Cambridge, the Royal Alex down in Brighton, also Southampton as well at the moment. And that's it's super exciting to see what impact that will have. So how can we educate patients better, start to really empower them and and allow them to start to take more control and feel less scared of of their disease. And and like Misha said, I think uh, early on, it was frustrating living with the disease, but now I'm I'm glad I have IBD. Like it is me, it's part of me. It's given me some incredible opportunities. I've learned so much about myself. If I hadn't have gone through that journey, I I'd probably still be building websites for some random companies and and and I think you see some of these startups and you're like, yeah, but when when stuff gets tough, then they're probably going to give up because it's not their real like this is my passion, this is my life and I think um, this is my purpose and I think yeah, it I will never give up doing it.

Dr Rupy: Amazing. Honestly, guys, Misha, Seb, it's been an absolute joy and a privilege to to speak to you both. And uh, I I just love the fact that you are turning what people would see initially as adversity into something that can flourish and grow and, you know, you found your community and you found your passion and um, you know, the stuff that you're doing for the for the wider community beyond IBD, I think is it's going to be super, super impactful. So I just wanted to formally say like, I really, really appreciate you giving your time to speak to me on the pod and um, I can't wait to support you both further. It's brilliant.

Seb: Yeah, thank you so much for inviting us and uh, hopefully next time we can you can cook us some food.

Dr Rupy: Have some of the food, yeah. I was hoping you were going to send me something I could eat now.

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