Meet Michael M. Author of "The Secret Life Of Crohn’s"

The word “surgery” can feel like a threat when you’re young and already worn down by Crohn’s disease. Michael Morgan, author of *The Secret Life of Crohn’s*, joins us to talk about being diagnosed at age 10, cycling through medications, and living with the kind of urgency that forces you to plan every minute around toilets, school schedules, and the fear of being noticed. We get into the part people don’t always see: the constant anxiety, the shrinking world, and how much mental energy IBD can steal long before anyone calls it mental health.

Michael also shares what it was like to hear ostomy surgery discussed as a teenager, the misconceptions that fueled his fear, and the moment he realized life on the other side could be bigger than the life he was trying to protect. We talk about the adjustment period, confidence building, and why so many people with ostomies describe freedom and relief once their disease is under better control.

From there, we dig into practical realities: asking schools for accommodations, using tools that make bathroom access easier, staying on top of Crohn’s management even after major surgery, and navigating rare symptoms like inflammatory disease in the mouth. And yes, we go deep on travel with an ostomy, including packing supplies, hostel bathrooms, and the small “tricks” that make big adventures possible.

If you’re facing a big treatment decision, supporting a child with IBD, or trying to make your world bigger again, this conversation will meet you where you are. Subscribe, leave a review, and share this with someone who needs a little more hope and a lot more real talk.

Links: 

• More of Michael's Story- Crohn's & Colitis UK
• Order Michael's book
• Article about Michael and his book- Hackney Citizen
• Traveling with an ostomy- United Ostomy Association

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Transcript

Cold Open And Guest Preview

SPEAKER_01 0:02

And you're going to talk about a podcast during real time about the reality. This week we talked to Michael Morgan. Michael is the author of the book called The Secret Life of Crohn's. And his bookkeeper counts what it was like being diagnosed with Crohn's disease at 10 years old, medical treatments he tried, what it was like having Crohn's while in school, and what it was like having Crohn's disease and having to face surgery. We had a really great conversation with him. We really enjoyed his book, and we know you're going to enjoy this conversation just as much as we did. Cheers.

Meet Michael And Drink Check

SPEAKER_02 0:39

Hi, everybody. Welcome to Bowel Moments. This is Robin.

SPEAKER_01 0:42

Hi everyone. This is Alicia, and we are so excited to be joined by Michael Morgan. Michael, welcome to the show.

SPEAKER_00 0:49

Hiya. You're right.

SPEAKER_01 0:50

We're doing great. Thank you so much for being on. We're very excited to talk to you and to hear about your book. So everyone, Michael is an author who wrote the book, The Secret Life of Crohn's. Highly recommend it. It was a very quick and fun read. So, Michael, we're excited to talk to you about your book. But first of all, we're going to ask you the very unprofessional question of what are you drinking?

SPEAKER_00 1:09

Well, I'm going out in a bit. So just sticking with a cup of tea for now.

SPEAKER_01 1:13

Where are you going out to?

SPEAKER_00 1:15

Uh, who knows? Uh meeting my partner and her cousin somewhere.

SPEAKER_01 1:20

I love that. I love that. Fly by the seat of your pants. I love that. Robin, what about you? It is the middle of the day in the US. So I'm gonna need you to not put that in because I am drinking an alcoholic beverage, Robin. You can take that out. You're the editor.

SPEAKER_02 1:35

I'm having a smoothie. I'm being good and I'm having protein. I think everybody in my life is telling me a hundred times a day, prioritize protein. So I'm having a smoothie. It has apples and bananas and mandarin oranges and grapes and a scoop of protein powder and Greek yogurt.

SPEAKER_01 1:54

Wow. I was just lamenting how my work day just ended and my frustration with it. So I am not drinking a smoothie or tea. I am drinking a ranch water. So I am drinking just tequila and soda and lime. And this is hopefully going to improve my day. It will have a frustrating end. That's okay. But anyway, cheers, guys. Cheers. Cheers.

SPEAKER_02 2:17

Cheers.

SPEAKER_01 2:18

Oh so good when it hips your lips. Okay. All right, Michael, next question for you. Tell us

Diagnosis At 10 And Early Meds

SPEAKER_01 2:24

your IBD story. What brings you into our community?

SPEAKER_00 2:26

So my story started when I was 10. So therefore I don't remember too much about the onset. I remember it was hard and fast and a lot of confusion and the pains and lots of trips to the toilet suddenly. Do have quite a clear memory of the first time I saw the blood in the toilet bowl. It's obviously quite shocking. And yeah, I did I did the classic childish thing of hiding that from my parents for as long as I possibly could. But I guess fortunately, my rapid weight loss was pretty obvious to them. So it wasn't too long before my mum was dragging me to the doctors. I think initially they they pushed back, kind of saying, Oh, it's probably just gastroenteritis and it'll clear up in a couple of days, don't worry. But I think the next day or the day after my mum just knew something wasn't right. So marched me back, kicking and screaming and demanding they did something. So yeah, a stall sample was requested. So yeah, there's no hiding the blood from that point. So I think I was in hospital that evening with the scopes the next day. So IBD was confirmed pretty quickly. Originally it was ulcerative colitis, the diagnosis. I think it's fairly common to get those mixed up back then at least. I don't know if that's still a thing. So yeah, childhood changed very quickly. Went to school a lot less, really struggled to eat and keep things down. And yeah, of course, lots of doctors' visits. I think we started with azothiaprin, sulfazalazine, mesalazine, lots of lots of meds. But it was really only steroids that worked in those early years for me. So predicolone, it would always turn me into a little chubby boy with red head. But yeah, they don't like you to be on those for too long, especially as a child, is my understanding. So I'd only ever get a few weeks of feeling okay. So my my disease was quite low down in my digestive tract. So I could go from being totally fine to I've got 20 seconds, maybe 30 seconds, to I I really need to be on the toilet, which made my world very small, because I would only ever go anywhere where I was totally sure there was a toilet there. Like, not not probably not 95%. Like I'd usually have had to have seen the toilet physically before to even consider going. Like seeing is believing. So yeah, that continued through my teens, very few periods of sustained health. We were always on the edge of the next drug. So when something would come out, you know, like Infliximab, we would start it as soon as it was available. And pretty quickly I'd be on the double dose and then double dose with half the time in between, just trying to stave off that deep relapse until the next drug came out. So that was the biologicals, the enemas, the suppositories. Uh, we even did a liquid, full liquid diet twice, which was definitely tough. The second time we had the tube up the nose. And yeah, they they worked, that worked really well. But again, it's just a short, short-term solution, really. We couldn't ever really get control, like sustained control of it. So, yeah, for me, the physical symptoms were, of course, tough, and everyone knows about those.

School Stress And Toilet Logistics

SPEAKER_00 5:40

But growing up, it was definitely the mental side that was the real struggle for me. The anxieties, overthinking, incessant routines and planning just dominated my thoughts and my life. So, for example, school every day was just so, so stressful, like almost like a tactical operation in itself, starting with the school bus, which was just an absolute nightmare in itself. But once at school, I just would spend so much energy worrying. Like every every thought, every other thought would be, I know the classics, obviously, where's the nearest toilet? When do I need to go right now? Where will be the next nearest toilet for the next lesson? All of those things that we all can relate to. But as well as that, like, is it going to be clean? Is it going to be vandalized? Is there going to be a cue? What if it's locked? Is there enough tissue paper? Will there be enough tissue paper for the next, I don't know, four, five, six, seven visits? And I had this real big thing of really not letting people notice how many times I was going. So I know let's say I went two or three times in one lesson. If I was with someone else the next lesson, I was just massive anxiety about them noticing me going again three or four times. And also for how long, right? Like most people maybe just go for five minutes max, right? I could be there for 20 minutes. Yeah, it's pretty, pretty overwhelming on a young mind. Not great for the old mental health and self-esteem. I think the main effect was that I kind of pulled back from everyone and everything. So my hobbies kind of fell aside, my sports fell aside, like friends, anything social really, just self-isolated from normal teenage things. So a part of that was definitely obviously fear of judgment, the stigmas, and not wanting to open up. Like I definitely wasn't ready to explain to people what was going on. But I think maybe an even bigger part of it was just not wanting to put myself in more potentially stressful situations because yeah, it was already just so stress-filled life. So I just tended to stay at home, like I was safe at home. My toilet was there, I knew that toilet, so I just stayed in as much as I could. So my family were incredibly supportive. My mum by my side through all of it. She had to quit her job to look after me countless times clearing up my sick in the middle of the night, getting up at 5 a.m. to help me with enemas. But with the mental stuff, I really just kept that bottled up and dealt with it alone, or at least tried to deal with it alone. I guess you might expect that from a teenage boy. But yeah, the first time my parents read the book, they were pretty upset and had no clue that a lot what I was going through most of it. Sorry, it's quite depressing. Yeah, I lived quite a dark and confined life until the age of 17. At that point, the latest meds were barely scratching the surface and there wasn't any new ones on the horizon.

The Fear Of Surgery And “The Bag”

SPEAKER_00 8:35

So the the very, very feared surgery word came back into the conversation. I'd always be such a trigger for me, that word. And yeah, every time it was said in a doctor's office, I would kind of instantly withdraw and go quiet and like be on the edge of tears. There was something about that phrase like having a bag just totally haunted me. I mean, I had absolutely no idea what what that meant or what that was. I had this mental image of like a plastic shopping bag, like a groceries bag, kind of just like duct taped to my body. That's kind of what I thought it was, and it would always just be smelly and yeah. So my fear was based on total ignorance, of course. But it but it's definitely a scary thing for everyone. But I do think there's like an extra edge for young people, because they have well often have body issues and confidence issues already and don't really know themselves. So yeah, another super clear memory I have is in that in the doctor's room when he kind of said surgery is the only way to go now. And then my mum sort of turning to me saying, Yeah, it is time, Mikey, come on. And just like completely broke down, pure, pure terror, just like totally trapped by this eventuality that had finally come for me, I guess. So I think it the next day on the ward, the surgeon kind of excitedly came up to us and was like, Oh, you're booked in for next Tuesday, but we we can squeeze you in tomorrow, which was like the Friday. I I obviously didn't see that as a good thing and complete opposite to what his stance on it. And I managed to convince them that give me the weekend, and I kind of thought that was my last few days of my my life, really. I thought everything else would just it'd be over almost. So we met with the stoma nurse before going home. Yeah, again, I just completely ignored her, was not not ready to accept this, continued to ignore it all weekend until the night before we had to go in. Well, I think my mum heard me crying in my room, and then we eventually just went through the pamphlets that they gave us. And they gave us like a sample bag, and I remember we filled it with water and like held it on my body, and like, yeah, that didn't help the nerves or the fears, it just it felt so big and so alien on my body at the time, and just so skinny and small. It was yeah, it didn't really help. But yeah, the surgery

Recovery And The First Taste Of Freedom

SPEAKER_00 10:56

happened. I had iliostomy and subtotal kelectomy, and yeah, as is the common theme on this podcast, totally transformed my life for the better. Post surgery, I think a few days later the surgeon was doing his rounds for recovery or whatever it's called. And just I remember him saying, What we removed was very, very diseased, and you're gonna feel a lot better very quickly. And yeah, he was just so right. There's obviously an adjustment period to having the bag and some confidence building. And there was this strange episode, there's a few years with my lip. So basically, once they remove the Crohn's, I guess the worst bits of the Crohn's from me. I think mine's quite well was quite tenacious and it moved to my lip. And it's OFG called oral facial granulatomolosis and targeted so basically, yeah, just kind of like Crohn's in the mouth. But for me, it really just targeted my bottom lip and mainly one side of it. Very, very bizarre. But basically it just swelled up like three, four, five times normal and sort of just just hung there all red and sore for three years. Also wasn't the most fun at school, that one, but definitely still an improvement, I think. But yeah, the lip aside, my stoma granted me a completely new life that I just couldn't have thought was possible before. I did things with friends, you know, went went to the cinema, went to the park where I didn't know there was a toilet, you know, wild things. Went to uni, and eventually built up the confidence to go backpacking around the world, which was obviously quite a big step for me. It's kind of like a milestone for me that was just like, oh, like this isn't going to stop you doing anything. I've been very lucky that since the surgery and the OFG being resolved. My Crohn's has pretty much been under control. Obviously, it's kind of there's a few inconveniences still, but it definitely doesn't drive my life in any way. I guess COVID was a bit of a spanner in the works from that in the UK, because I am still immunosuppressed. We had to shield, which I don't know if you know what that is, but we basically had to stay inside the flat for months and just couldn't leave, like not even out, not even go for a walk. And since I've been healthy, I kind of drew a line through my Crohn's life and decided to move on rather than looking back. But COVID and shielding kind of paused that. So yeah, just one day I was writing down some stories and talking to my partner. And yeah, I never really thought that deeply about my experience of growing up with severe Crohn's. So yeah, just writing down some memories and it kind of all just blew out of me dark stories, funny stories, and some friends and family eventually found out about it. It was, it became pretty, pretty clear to us that my experiences could help some other young people and and their families, especially, especially with what I always see as the more hidden side of Crohn's and well, IBD and living with a bag. So yeah, that's that's where the book came from. And I guess that's my IBD story as well.

SPEAKER_01 13:54

That's great. Thank you so much for sharing that. And yeah, there was there was a lot in the book that I thought was it was really interesting to read. But that yeah, there was some some funny stories. There was redemption, there was there was lots of excellent points in it. I think the part I thought was really compelling, and you kind of hinted at it here, was just after you had had the bag for a little while, you'd had your stoma for a little while, you were feeling better. It was there was like had to be a mental shift though, where you said, hey, wait a second, I can go do stuff. I don't have to stay at home because you'd sort of gotten into that routine of staying home. I thought that was a really interesting point because you were like, all right, it was almost like there was a switch that got flipped, and you're like, I'm gonna go try things now. And so it was, I liked that because it did sort of show that you have to sometimes work through you spent seven years, you know, just kind of making your world small. And then you had to go, okay, I'm gonna take a step. And same thing when you you'd been working for a little while, and then all you suddenly said, okay, I actually I'm gonna go travel. It's like it kind of felt like the same thing where you're like, wait a second, I don't have to stay in this world now. My world got bigger, but I can make it even bigger. I thought that was really interesting that it took you a little bit to kind of hit those milestones.

SPEAKER_00 14:58

Yeah, I feel like it's definitely a process. Like I remember, I don't know, the thing that's coming to mind right now is watching my football team play football and suddenly realizing that I'm actually watching the football this time rather than thinking, monitoring my belly and do I need to go to the toilet? Do I need to get through the crowd? And is that toilet going to be clean and all those things that just weren't in my brain? It was like, oh, this this is interesting. Like, oh, I'm not worrying about the journey home, the 40 minutes in a car. It's just yeah, it's a process to notice, almost notice those things, and yeah, you kind of become free, right? Slowly.

unknown 15:32

Yeah.

SPEAKER_01 15:33

Was that also the case for you?

SPEAKER_02 15:35

Well, yeah. Yes. But I hope you know this about me. I wing things that I absolutely should not wing. But well, I mean, I remember the year that I just ate chicken, rice, bananas, and I was like that was a whole year. So going back to eating food after that, it was uh definitely a pro like, yeah, it's a process. And it you get re-traumatized when you have when you're feeling well and then you have a flare again, you basically just get re-traumatized. And then it takes time to like trust your body and trust yourself. And yeah, yes.

SPEAKER_01 16:09

It's interesting you say that because also like both of you spent so much time plotting out what could happen and what could be, and how can you minimize and all these things. Like it's that sounds exhausting. I mean, you talked about like being in school and sort of thinking about, you know, Michael, like thinking about I don't have to think about where the bathroom is now, or about how much time that you spent sort of again trying to strategize the rest of your day and how much of that time, how exhausting that is, and how much of that time you've gotten back now that you don't have to do that.

SPEAKER_00 16:39

That was my life. The planning was my life. Like every day I would get up two hours earlier than I would need to and like shovel some breakfast in, and then hoping that I just like sitting on the toilet for hours trying to get it to come through. Because I knew I needed to eat, but I knew there was an hour on the bus where there's no toilet. So if I can get it down and out before then, that's gonna be much better than it potentially going in my pants, I guess. So that was every morning started like that for seven years. And you're all the the night before you're already thinking about that. So you're making sure your bag is packed, you're doing everything, your clothes are out, everything's ready so that you can even just have two more minutes on the toilet because that that could be the difference the next day. Who knows?

SPEAKER_01 17:22

That's so much thought that could have gone to other things. That's yeah.

Asking For Help At School

unknown 17:26

Yeah.

SPEAKER_01 17:26

I'm curious. I mean, you you it does sound like you were you were quite private with this as it relates to how you talk to your peers. Were you more open with the school, or had your mom or your one of your parents talk to the school about like what you might need or your Crohn's disease? Like, did the were the teachers aware that you would need to be in and out?

SPEAKER_00 17:43

So before surgery, definitely not. Like they they knew I I had one of those, I don't know if it's an American thing, you can get these IBD cards here where it basically says, like, please help, you can use the facilities. So most of my teachers knew that I would go a lot off more often to the toilet, but definitely not to the extent no one knew what I was worrying about and the planning. But then post-surgery, well, I had to repeat the year because I missed like six months with the surgery and stuff. So we had a meeting with the school, and yeah, that helped so much because they were like, Oh, of course, you don't use the staff toilet. And like the the matron has their own private toilet, you can use that whenever you want. Like, it is very frustrating looking back. Like, if I just said that in the first year, I would have saved myself so much stress. And I've I've started sending the books to schools and contacting schools in the local area, just like there's anyone there, like you could just be saving so many people so much stress if they just yeah, would seek help. But I guess it's just a very teenage thing to this is my problem, this is how no one else can solve it, right? I have to solve it. Yeah.

SPEAKER_01 18:46

Listen, Robin wasn't a teenager, and I think she still had the same attitude, but that's kind of Robin's attitude, is that she can save it, so she can figure it out.

SPEAKER_02 18:54

That's true. I was not, I was 25, but I still felt that way when I was flaring and my and at 45. So yeah.

SPEAKER_00 19:01

Yeah, weirdly, last week at the the pub, I was talking to a friend who has drones much more mild, but he he did say something of like, yeah, I do sometimes think to well, I'm not maybe I won't go to that camping trip or something. And I was just like, Oh mate, you're you're breaking my heart, like saying something like that. Please don't let it stop you doing things, like it will be fine. Like, worst case, what what will happen? Like, yeah, worst case, you have an accident. That's okay, man. Like it's fine. I mean, but yeah, I'm obviously at a place where I'm happy to I've had lots of accidents, so I can brush it off. But yeah, I appreciate people can't do that as well.

SPEAKER_01 19:38

In the book, he talked about having to like go to doctor's appointments or get around and be on the tube. And so, and you mentioned like you knew every station, every bathroom in every station. I'm so fascinated by the fact that there were actually bathrooms in the station because we chatted with our friend Jose, who's he's in New York City, and he was talking about having to like spend an hour on the on the subway to get to his doctor's appointments, and about how he's like, Oh, and I saw I said, are there, you know, are there bathrooms? He's like, no, and I wouldn't want to use them even if there were. So I'm curious about the bathroom facilities in the tube. Is it terrifying? Is it like emergency only or are they decent?

SPEAKER_00 20:14

Oh, yeah, they're not they're not decent and they're usually closed, but it's not it's not in all stations. But yeah, I would even know obviously it was a very similar route every time. I would know which stops would have a public toilet near them as well. So, like not in the station, but just outside or something. Yeah, no, they're they're not they're not good. They're not good toilets, but yeah, that's better than nothing, isn't it?

SPEAKER_01 20:36

Yeah, need needs must, yeah. I'm in general, has the so you said you have a card that talks about, you know, the ability to use the the toilet in places. Has that worked well? Is this like a universal that people understand?

SPEAKER_00 20:48

Well, that was I haven't had one since I was a kid. I just remember having one back then. But now I I do have a radar key. So uh, yes, I don't know what the equivalent there would be, but people that send me my bag stuff, they can also provide you with a radar key, which is just the key for all disabled toilets. Is that not a thing there? It's like this big chunky key. Yeah, so it opens all disabled toilets, which yeah, so the general public don't have access to, so they are usually okay. I mean, I've only ever used it once, but yeah. But yeah, with the card, I think in other than showing my teachers or when we had a substitute teacher. I think, yeah, maybe a few times used it at the station. And I have had a couple of people be like, I don't know what that is, you're not using the staff toilet. But then, yeah, usually my mum was with me, so she'd kick off or something. So it we would get there.

SPEAKER_02 21:36

Oh, mom.

unknown 21:37

Yeah.

SPEAKER_02 21:38

I'm curious, was it the d what the doctors were saying about surgery that made you so scared or worried or like you like you didn't want to have it? Was it the way they presented it to you? Or was that just do you feel like being a teenager and having to think of having surgery? What made it so scary at that point in time?

SPEAKER_00 21:59

Um Don't I don't think it was the actual surgery that was scary, it was the the having a bag and that the image that that conjured of yeah, well maybe not even the unknown, just in again, maybe that's just me or here, but that you associate that with old people needing that, and a young teenage boy shouldn't be having a stoma bag. And sure, a lot of it must have been fear of the unknown as well. But anyway, it doesn't sound very nice either, does it? Like having a bag and that you yeah, that you shit in, like on your body outside. But yeah, everyone listening, it isn't that bad. It's it's great.

SPEAKER_01 22:37

I think it just also must be the finality of it, right? Like taking out a whole organ feels very dramatic and final. Like you can't take your colon back. So it's such a big decision to make at us as a teenager, knowing you have this whole life ahead of you. So I think there's there must be also that aspect of things.

SPEAKER_00 22:56

Well, they I've been left with a well, I'm not sure what the medical term is, but I've got like a sock left at the end, is how I think of it. So they I could be reattached, but the bit left is called diversion colitis, which is basically where the bowel gets irritated because it's not being a bowel. But yeah, even if I didn't have that, there's no way I would risk going back. Like it it doesn't make any sense to me to risk having that old life. So yeah, there's no way would even consider it.

SPEAKER_01 23:22

We have heard that a lot from people who have ostomies, or it's even if with the ostomy is very much not something that they wanted, is that afterwards they had like many of them, not every single person we've talked to, but many, many of them really they felt so much better afterwards and they felt so much freedom afterwards that they really were happy they did it. But there was a lot of angst from a lot of them before they made their decision. And in some cases, you know, people who it happened emergently and they woke up and suddenly there's a bag and you know, and having to come to terms with that. But again, how like they got to a place where they realized how much more they could eat, how much more freedom they had, how they weren't having to use that headspace you were talking about to really kind of map out and plot and plan and the freedom it allowed. So yeah, Rob and I definitely talk a lot about you know having conversations early, even if this isn't something just so you can start to kind of understand it. And it may never happen for you, but just still understanding that this is this is a treatment option.

SPEAKER_00 24:20

So from what I always understood was well, we were told that Crohn's or IBD can mellow more as you grow up, grow up. So we were told that the goal is basically to get to adulthood without having any long-term effects. So that could obviously be surgery does have long-term effects and steroids like stunt your growth and stuff like that. So it was almost like, let's just try to get through your adolescence where your body's got lots of stuff going on anyway. And I think that's what they kind of the idea at the time, anyway. We what we were told. If you can get through that, your Crohn's could mellow and you could you could see improvement just from that. So that was always the goal. But yeah, then like I said, we ran out of options. We didn't quite make it, basically.

SPEAKER_01 25:04

I hope they know better now.

SPEAKER_00 25:06

Yeah, yeah.

SPEAKER_01 25:07

You mentioned that you have still had to maintain your Crohn's with some medications still,

Mouth Crohn’s And Ongoing Management

SPEAKER_01 25:13

though. So that while the ostomy has drastically improved your life, it does there is still some Crohn's management that you must do, correct?

SPEAKER_00 25:19

Yeah, so I mean, my my lip is kind of like an early warning system for me. I'll I'll feel it tingle a bit and I'll know that sometom's not quite right. And yeah, so I I only recently stopped azothyprints, so I was on that for 25 years. And yeah, I've just actually gone up a biologicals to is it uzichinemab, the next one up, because I've been having some blockage issues with scarring. It's all very new to me, so I'm definitely not an expert on it, but that's just the last few months.

SPEAKER_01 25:47

Not surprising. I mean, that's this is the issue with Crohn's disease versus ulcerative colitis. Is so, you know, for some folks with ulcerative colitis, having their colon removed makes it so much better that they don't need medication anymore. But for our Crohn's folks, you know, because it can, like you said, all the way gum to bum, it well, in your case, lip to bum, it can, you know, it can be affect affecting lots of places. So I'm but that is that's what was a little bit mysterious to me is it's just your lip. You never had any like mouth ulcers, throat, stomach, nothing else.

SPEAKER_00 26:15

No, I mean the odd ulcer in the mouth, but definitely the lip was just constant, like it was always big. The frustration was because of the strangeness of it, we we had a new hospital. So they didn't know about my history of that. I'm kind of one of those patients where it is not easily going to be resolved. So they wanted to start on the very bottom again with the weakest drugs. And I was kind of like, it's just not gonna work, trust me. And they have that process of slowly ramping up, right? But yeah, eventually we they would inject steroids into the lip, which was quite painful. So it was already swollen, and then they're in so you the the wet the wet, dry boundary of your lip, like maybe six or eight injections across it, so where it's taken wet to dry. So yeah, so the lip was already swollen, then they're puncturing it, so which obviously makes it more swollen, and then they're actually putting in liquid to make it even more swollen. That was so by then I was going to the doctor's by myself, so that was always quite a funny journey home because I would be holding tissue. Well, in the winter I'd wear a scarf to hide it because it would just instantly go even bigger, like comedy, comedy size. But yeah, in the summer I'd put tissue to hide it. I mean, it was bleeding, so so I'd be on the tube and I'd say once uh once every two times someone would come up to me, like, Are you okay? Like, have you been punched or something? I'm just like, I'm fine, I'm fine. Actually, no, I didn't speak because I couldn't really talk. So I was like just like nodding and like saying, Yeah, I'm fine with my eyes. Yeah.

SPEAKER_01 27:45

Oh my goodness. Public transportation would be a challenge with inflammatory ball disease, every lots of aspects of it. So, yikes.

Backpacking With A Stoma

SPEAKER_01 27:53

I would love to talk about I mean you mentioned this a little bit about, you know, kind of starting to do some traveling and kind of realizing that, you know, I want my world to be bigger. Talk us through, and you talk about it in the book, but talk us through just kind of your thought process of choosing what was your first adventure, getting yourself prepared for that, because you were trying to backpack around these places. And I am having traveled a fair amount in my life, I have never backpacked and stayed in hostels like you had, because frankly, I have zero interest. So I'm curious about this. Sharing spaces with people, packing enough stuff, because you were gone for a long time. So start from I really people can read your book, but give us the sort of you know, Cliff Notes version of Okay.

SPEAKER_00 28:32

So the first one, obviously, I spoke to the doctors first and said, Look, I want to do this trip four months away, which at the time I was on, I can't remember which biological, but one of the injections, injecting yourself, and it needed to be in the fridge, which quickly realized that's just not going to be possible to keep it cold. So anyway, he was like, Look, I can't advise you to do that, but I understand that you're gonna go. So it's okay. Gave me some steroids as take with me. And anyway, I've been good for a few years, so it was fine. But yeah, choosing where to go. I mean, I thought, well, let's kind of keep it maybe Western and not let's not go to India straight away. So I chose and and also in English speaking, in case something did go wrong, I would be able to communicate. So started with New Zealand and Australia. But yeah, how many supplies to take was very difficult. There's lots of blogs and YouTube videos from people about packing and traveling with uh stoma, and all the advice is that you should take twice as much like than you would normally have because, well, firstly, stuff could go missing. And if you're going to a new climate, you might need to change more regularly because of the heat and stuff like that. But so I ordered what I needed to and put it on the bed, and it was just this absolute mound. It's like there's no way that's going in a bag. So yeah, started to repackage it, and I ended up taking like 1.25, let's say, of what I need my normal routine. But yeah, that was like basically 80% of the biggest backpack I could possibly find, which was I think it was like 80 litres, but plus 30. So you get like an extra backpack on the back of it, and yeah, full of supplies and incredibly heavy. But obviously, over time you would use it up, so it it would it got better and better. In terms of hostel life, yeah, as you said, I talk about it in the book quite a bit, but just planning for every toilet was a big thing because I'd never I've never been to hostels before, but I imagined it was you don't get your own private room with the en suite. So I imagine it's like a public toilet with plastic walls, and yeah, how and the sink's obviously going to be separate from the toilet. So trying to work out how to manage that and where am I gonna put my stuff that I need to change my bag, and yeah, like we literally had like family meetings, like, how do we solve this problem and this problem? Eventually, the Eureka moment was get you can get these travel bags which have a like a clothing hook on them, and you could always just hang that on the door or hang that on something. That was the idea, and little spray bottle of water you could just put up in the tap. That kind of solved that problem until the two days before I was due to leave. I realized, well, what if those walls go up to the ceiling? So then there's nowhere to hang. I was like, shit, okay, I'm obviously not gonna cancel my trip now. But yeah, again, talked to my stepdad, and we just bought some of those little hooks on suckers that you can stick on the wall and tested them at home. Can they take the weight? And yeah, just lots lots of planning. Yeah, after the first trip, you realize that so many of these things just didn't need worrying about, and you can usually find a way around it. And yeah, sharing with people in the hostel, you just learn little tricks like well, when you wake up, your bag's usually super full, right? So rather than setting your alarm at nine when everyone else would get up for the hostel breast breakfast, you get up at five to nine. So then you have a clear route to the bathroom and have time to empty or change your bag. Just you you learn little little tricks basically, and you you definitely don't want the top bunk because trying to get down a ladder with a full bag, you obviously everyone will be more visible. And but then yeah, you quickly realize that these aren't real problems and it it's worth it anyway. Like just have the best time of my life. So yeah. So then that was the first trip, and then I went to Canada, slightly different trip, less partying, let's say. But I met my partner in Canada, and then the final trip was South America, which was again even more different because there's the water's not as clean and maybe the hospitals aren't as readily available. So so in Australia, I I did run out of some bag surprise, but I basically just went into a hospital. I said, Can I is there a stoma department here? And the lady there was so helpful and just gave me loads of wipes and kind of restocked me, which yeah, maybe that was bad planning for me, but again, got away with it. Like it's fine.

SPEAKER_02 32:49

But that's a good solution.

SPEAKER_00 32:51

Yeah, and I can't remember what the website is, but there is websites that kind of give you contacts for multiple countries, like people you can contact in each city for for this exact reason. Yeah, uh it's such a long time ago now, I can't remember. But these resources exist basically, and your stoma nurse can advise on them and they'll provide you with doctors' notes for why you're carrying so many meds and all these kind of things people have thought about before. And yeah, it's doable. It's doable.

SPEAKER_01 33:19

And you're you were partnered by the time you went to South America, so your partner went with you to South America?

SPEAKER_00 33:24

No, no, I've only done the backpacking stuff alone. Yeah.

SPEAKER_01 33:27

I am very impressed with people that go and backpack on their own. I mean, like I'm a pretty independent person, but I also love to share travel experiences, and I feel like I I wouldn't be I feel like I'd get weirdly introverted with it. So I'm I'm like very impressed that you just were like, I'm gonna just go and like make friends and and be on my own.

SPEAKER_00 33:45

You're you're never on your own for more than like two or three days. You kind of collect people and go on everyone's kind of going similar-ish routes, and you create a team almost each time, and yeah, you're not you're just not really ever traveling alone. I mean, if you did hotels, then you might be, but hostels, everyone's kind of on that same level and they're wanting to make friends and do awesome things. So yeah, it's you would be fine.

SPEAKER_01 34:09

The one thing you did say in your book is that you had an attack of the orofacial granulomatosis when you were in New Zealand, right? And like and you thought you think it was because of the salt water?

SPEAKER_00 34:18

In Australia, yeah. So one of the kind of things you do is the Whit Sunday Islands, which is kind of just off the coast, and you go on like a big patamaran with 20 strangers and go to awesome snorkeling places and late night partying kind of thing. But yeah, we did a snorkeling, I don't know, 40-minute snorkel dive somewhere, and suddenly just felt really crabby. So I went to bed, and then yeah, when I woke up, just full bang again, suddenly four or five times the size in the middle, like we're two days from all kind of thing. Yeah, I mean, there's no hiding it, right? I just went to the went to the captain and was like, Do you have a satellite phone? Like, can I call my doctor? And he was like, No. I just took some steroids and yeah, four or five days later it was down again. But okay, this is I'm sorry.

SPEAKER_02 35:07

Do you have any sign of Crohn's in your small intestines? Or is what happens in your mouth where you have active disease now?

SPEAKER_00 35:17

I don't know. I have had a camera down the stoma last year, which was absolutely horrific. Well, the worst. I've obviously been through quite a few things, but that was not nice. And it looked good on the screen. Like it looked quite pink, a lot red. So yeah, I think it's okay. Yeah.

SPEAKER_02 35:35

Yeah. I I ask because I was originally diagnosed with ulcerative colitis. It changed to Crohn's. Like we said, that happens a lot when it's really bad in your large intestine. And but my small intestine is also good. It's in my stomach now, which is rare in your mouth, which is rare. So I was just wondering if it showed up anyplace else or you know, upper GI Crowns. Yay.

SPEAKER_00 35:59

Not yet. Let's say. Let's say not yet.

SPEAKER_02 36:02

Don't put it out there. Never. Come on, Michael. Don't put it out there, never.

SPEAKER_01 36:06

What did they say in this house? Don't put that evil on you. That's right.

SPEAKER_02 36:10

Keep your voodoo to yourself, Michael. Keep your voodoo to yourself. Sorry, sorry, sorry.

Family Perspectives And Food Anxiety

SPEAKER_01 36:16

I appreciated the fact you also added into your book that you're like your parents' perspective. Probably I think it sounded like mainly like your mom's perspective and your partner's perspective. Like the like addendums that came along with it of like, we've now read the book and this is kind of our take on it and tips from your mom. I thought that was that was a nice way of kind of like closing the loop a little bit.

SPEAKER_02 36:34

Yep. I really love that. That's the first things that I highlighted. Actually, I'm going to tell you what the first thing that I highlighted is from your partner's appendix. In the middle, just a weird little sentence in the middle of her section or of your partner's section is but there is such a jump from knowing about a disease and knowing how to live with a lifelong disease. When they were explaining they have a degree in immunology and so they're familiar with it, but then like being with you and seeing it through your eyes and understanding the gravity of your experience and how no class or hearing about it could possibly share a sliver of what like the experience of living with it is. And I really loved your parents' appendix. Any parent should read it.

SPEAKER_00 37:24

I think that's the most feedback I've got is from friends who are some parents, and they obviously say, Oh, we really enjoyed your bit, but reading your mom's chat to I was like in tears. And just like try put themselves imagining their child like that, right? Yeah. Yeah. And there's been some I've had some lovely words from people with kids who have crowned saying that how it's helped them to understand what they're thinking at these certain times and what they're going through, which was the whole point. So a lot of it's like I've I've had a few of those reviews, and it's like, cool, like mission achieved. I can die happy now. Like I've kind of passed on what I wanted to. Yeah, pretty happy with it.

SPEAKER_01 38:01

You know, your your partner sounds pretty awesome. Obviously, people, awesome people get awesome partners, I like to say. But I think it was nice to see her commentary on how she's helping with some of the like food-related trauma that we know is so, so, so common in our community. Like food hurts. And so it's real tough for a lot of our folks. I really appreciate the fact that she's like, this is how I am working with him to be able to, you know, work on trying to expand your palate, expand your diet, or figure out how she helps to accommodate you when you're going out and you know, when you're invited out. So I I I liked that tip. It was it felt like a nice thing to tell people who have partners that, you know, like Robin talked about, you know, at some point she was eating five foods and that was it. And like I'm sure Matt, her husband, would like to eat something else.

SPEAKER_00 38:48

Yeah. I mean, I guess the backstory is that obviously lots of people with IBD have bad relationships with food because it would equal pain, right? Like any food just equals pain. So trying new foods is an even greater risk. So you just your food world also gets smaller and more restrained, which yeah, it makes total sense. But yeah, once you do grow up a bit, you you can't just eat five things. Well, you can, but there are other nice food out there, right? So my partner would, I mean, obviously I ate more than I did as a child before my partner, but it was something that we did work on together, and there would just be we just like work on creating a a calm environment. And because the big thing is just the fear of it, right? Like something strange on your plate, and it's just like that's touching my other food, like get away. The whole like associating it with the pain, that's almost history. That's just locked in somewhere back. It just becomes the no, no, I don't eat that food. But you don't know why, you've never even eaten it, so you don't know if you don't like it, but you know you don't want it. So it's taking that fear away and putting, I mean, we're we're less strict with it now, but we kind of, I know, once a week or every couple of weeks, we would cook something different. And uh, what's coming to mind now is like courget. So she we'd have courts, but it would be cooked separately and it would be on its own plate. And I don't know if even when she just popped to the loo or doing something over there, then maybe I'll just take a small bit of it and realize very quickly, oh yeah, it's just like just a bit of food, it's fine. Take trying to take away that fear and all the other tricks we did, like, oh, like I know, fruits, like kiwi, for example, you know, looks so alien compared to other fruits sometimes. So we would make a smoothie and then that would go in it and obviously be hidden by other flavours, but it's not really the flavours you're scared of, it's something else. So surely it's fine to eat it. I've drank it. Like it, yeah. And then, yeah, the whole going out thing. I mean, that there's still definitely a bit of fear with that today, definitely with like with people that I don't know or don't know me, because obviously, not that I feel the pressure to or anything like that, but sometimes you just don't want to have to explain the backstory of why you can't go to a sushi restaurant or don't want to. So she kind of knows that if she gets invited somewhere with a partner, she knows to try and investigate where we're going and maybe steer it to somewhere, I don't know, Italian, because they'll have pizza and that'll be fine. Or do you know what I mean? Like steer it to something which has other options and yeah, she'll have a sneaky look at the menu and oh yeah, he can have that, and stuff like that, basically.

SPEAKER_02 41:22

The fact that you called out pizza by name, because that is the ultimate safe food. I've said it on this show multiple times. It is Do you mean in terms of going to the toilet or in terms of in tor in terms of I'm feeling bad, if I'm in pain, if you know anything like that. I know I can have bread, sauce, cheese.

SPEAKER_00 41:42

Well, for me, I've like since I've trying new foods, it there hasn't been the risk of it causing me pain because I've been healthy. So it's it's just the psychological aspect.

SPEAKER_01 41:52

Yeah. Well, and justin quotes there because just isn't is a big term. I mean, it's that's you're you're battling your brain, and that's really, really difficult. I'm assuming that traveling has also helped you kind of push your boundaries a little bit, just because at some point you're if especially if you're staying in a hostel, you're getting what they make for breakfast. You don't necessarily get a chance to choose. So was that helpful or did that make it worse?

SPEAKER_00 42:15

Yeah, I mean, obviously being out of being doing fun things like going to a restaurant, even forget traveling, just going to a restaurant. I would find that I would try foods there as well because I don't know, you're a little bit excited. And I don't know, so it the atmosphere is definitely a big part of it. In terms of traveling, the memory that's coming to mind is one of the in Canada with my partner, I think like maybe a week after we met, actually, we were basically doing this bus like through the Rockies. And because there was like 15, 20 of us, there, there was the idea of, yeah, let's buy food at the supermarket and cook a group meal, which yeah, that is alarm bells. Oh shit. And then what's what's the go-to easy meal for that kind of situation is pasta, right? And as I'm sure he read, pasta and me have an interesting relationship. So that was one of those terrible situations that I found myself in. But yeah, I just panicked for 30 seconds. It's like it's cool, I'll just go and buy my own food and just say, Yeah, sorry, I'm not, I'm sure do my own thing. And it was fine. And yeah, there was a few like, oh, what's Mike having? But who cares, really?

Final Advice And How To Support

SPEAKER_02 43:20

Thank you so much for coming on the show, Michael, and for writing the book and for sharing so openly and vulnerably with us. And unfortunately, it is time for me to ask you the last question. And that is, what is the one thing that you want the IBD community to know?

SPEAKER_00 43:36

I guess it's for everyone, but definitely for the main the young sufferers is don't struggle alone. Like other people can help. Whether that's the school or your parents, it's not worth not talking to people. Yeah, and I guess as well as that, try not to fear the bag. Like if that is being floated as an idea, don't totally cut yourself off from it. Yeah, just like change my. Well, opened it up to wonderful things that yeah, just didn't seem possible.

SPEAKER_01 44:04

Oh, very good. Very great advice. Yeah. And, you know, if you are in a situation where you're facing surgery or facing, you know, having a stoma, yeah, reading a book like this or reaching out to somebody in the community that has lived with it for a little while, I think is definitely, you know, very important because it I think it can help some folks feel more confident about their decisions for sure. So, Michael, thank you so much for joining us. It was just such a pleasure to get to talk to you. It was such a pleasure to read your book and and learn a little bit about your life there too. So thank you so much for joining us. Thank you, everybody else, for listening. Cheers. Cheers, everybody. Thank you. If you like this episode, please rate, review, subscribe, and even better, share it with your friends. Cheers.