For this episode of Karger’s The Waiting Room Podcast on World IBD Day on May 19, we spoke with Jen Rose, who was diagnosed with inflammatory bowel disease (IBD) when she was 10 years old, 33 years ago. She is currently training to be a psychotherapeutic counsellor and offers emotional support to newly diagnosed IBD patients and their families. Furthermore, Jen is the author and illustrator of “Me (and IBD)”, a coloring journal that was designed to reach and support young people with IBD.

In the first episode of our two-part special we focus on what IBD is, what to look out for in terms of symptoms and diagnosis, and what it is like to live with the condition based on Jen’s patient journey.

The second part of the interview will be published on May 18, 2023.

More information on IBD is freely available here:

• Infographic Summary Sheets for Patients: What Is IBD?
• Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Hello Jen, and welcome to The Waiting Room podcast.

Hi Alex, thank you so much. I’m really excited to be here.

This question might sound like a total no-brainer to you, but in short, what is IBD and why is it different for everyone?

Okay, so IBD actually stands for inflammatory bowel disease, and it’s a chronic condition, which means it’s something that you have for the rest of your life. It affects your digestive system, so it can be anywhere from your mouth to your bottom. And it’s an immune-mediated disease, which means that your immune system, which is usually protecting you and looking after you, actually starts to attack healthy cells in your digestive system. And that causes inflammation. There’s two common forms of IBD that most people will have heard of or lots of people will have heard of, and that’s Crohn’s disease and ulcerative colitis. There’s other, rarer forms of IBD, it’s usually called microscopic colitis.

So, the difference between the types of IBD, essentially it’s about the location of your inflammation. With ulcerative colitis, inflammation only happens within the colon or the large bowel, whereas with Crohn’s disease the inflammation can be anywhere, like I said, from your mouth to your bottom. Also, with ulcerative colitis, it’s only the inner lining of the bowel that’s affected by inflammation, whereas with Crohn’s disease that inflammation can go deeper. Sometimes it’s actually quite hard to tell whether you have, which specific type of IBD you have. And if that’s the case, you might be diagnosed with something called IBDU, which is inflammatory bowel disease unclassified, people actually have that, and it might be that further down the line they realize it’s one condition or the other, but sometimes not.

The symptoms of IBD are, there’s a huge range of symptoms, but they’re quite similar in that you will often have diarrhea or constipation. Lots of people have pain, tummy pain and or pain anywhere within their digestive system, and often there’ll be blood or mucus within the poo and also endless toilet trips, often with urgency as well. So, it can be really quite impactful on your life. And then there’s other things as well. Lots of people can lose appetite, lose weight, it can affect your growth, and fatigue is a really big symptom of IBD. There are other parts of the body that can be impacted by IBD, too. And also there can be complications. So, inflammation that’s not effectively treated can then cause problems which can even lead to surgery.

IBD is a relapsing-remitting disease, which means it comes in kind of flare-ups and periods of remission. So, it could well be that you’re not feeling, you’re not having symptoms all the time, but you never quite know when you might start having symptoms. It can be very unpredictable. But yeah, as you can imagine, it has a huge impact on daily life.

The reason it can be different for everybody: Well, as you’ve just heard, there’s a huge range of symptoms. So, lots of people have few symptoms or sometimes no symptoms, but lots of people have a range of symptoms and it can just be, you can kind of pick and choose from any of those. It’s also about how the patient copes with those symptoms, too. Somebody who works from home and has access to a toilet, an easy access to a toilet, might find it easier to cope with those symptoms than someone that works away from a toilet or that goes to school and that kind of thing. So again, personal situation is really important.

There’s also a range of treatments available. And again, the treatments are, there’s no guarantee that they work for everybody. So, different people, different patients react differently to different treatments. Some work for some, some completely have no effect for others. And so there’s never any, it’s never any sort of certainty. And then again, with the relapsing-remitting nature of IBD, some people will flare constantly or regularly. Other people will flare once every few years. There’s just no predicting it. So, it can be incredibly different for every patient.

I see. Many thanks for this great overview. So, what did or what still does your own patient journey look like? That is, to which extend did you understand your condition as a child and how did you come to terms with it in the course of time?

Gosh, that’s quite a big question. I was ten years old when I was diagnosed with ulcerative colitis. That’s quite a lot of years ago now, about 33 years ago. So, I struggle to remember some of the kind of leading up to the diagnosis. But I know at the time the diagnoses of ulcerative colitis in children so young were unusual. So, there was no there was no kind of pediatric-based care teams available. It was just, I joined in with the adults and was treated there. I remember when I first was going to the toilet more often and I would be, it would always be urgent as well. And then I would end up spending long periods of time in the toilet. And this was because I know now my ulcerative colitis affects my rectum and the last 30 centimeters of my bowel, that’s where my inflammation is. And that can kind of have a really, it has a really sort of physical, quick effect on me when I’m flaring so I’ll need to go to the toilet constantly.

There’ll be quite a bit of blood in my stool and I get lots of kind of trapped wind, and it’s just really, really uncomfortable and the urgency as well is a real issue because the inflammation is around or where all the nerves are packed into your rectum. And so my brain is thinking I need the toilet all the time and even when I don’t. So, anyway, I remember being given treatment for my IBD. Actually, at the time I was told I have mild to moderate disease and actually I was told by the doctors: “You’re really fortunate. You know, you’re actually, you’re very lucky because it could be much worse. You could be really poorly.” And I remember thinking at the time, as a ten-year-old, thinking: “Oh, well, he’s a doctor and he knows what he’s talking about. So, absolutely, I’m fortunate. I’m lucky.” And, you know, I can’t make a fuss about this, even though I didn’t feel particularly okay.

I didn’t feel like my disease was mild to moderate and I was having some, you know, incredibly challenging symptoms. But that kind of set the scene for my whole disease journey, I suppose, in that I felt I had nothing to make a fuss about and I couldn’t, you know, I didn’t want to keep bothering people with it, and I didn’t feel like I was justified to go to the doctor and say: “I’m not feeling well again and I’m going to the toilet 20 or 30 times a day.” And it really impacted on me because growing up as a teenager, as you can imagine, there’s lots and lots of challenges anyway but adding the really challenging symptoms that I was having into the mix, plus this feeling of almost guilt around, I suppose it sounds crazy, but almost guilt about not being more sick than I was. Yeah. Made it really, really difficult.

So, my disease has always flared regularly. I’ll be well for a little for a period of time, and then it will, I’ll flare again. And then I’ll take some treatment and it will go for a little while and it will come back. And I just kind of, rather than seeking something that would give me a more permanent remission, I just accepted that that was how it was. I wasn’t very good at reporting to the doctors that when I was having symptoms, partially because of that guilt, but also because I hated taking steroids, absolutely hated the effect steroids had on me, on my mood. And I put weight on and my face swelled up. And as a 14-, 15-, 16-year-old girl, that’s not ideal. So, and this kind of became my normal really. I didn’t really talk to anyone about my symptoms. I didn’t understand really what was going on. I just knew that I was having these symptoms. I would hide it as best I could. I would pretend I was fine.

None of my friends knew that I had anything wrong, but it got really tricky because, you know, sitting in the lesson in school, going to the toilet once the teachers will accept, going twice they start to get ratty, going three or four times, which quite often I had to do, it would be really tricky. So, I kind of ended up being very, quite an anxious and isolated person. I lived very much in my own head, sort of trying to cope with everything and trying to remember or trying to figure out the best way to keep everything secret, always planning ahead and thinking: “Can I do this? Because if there’s no toilet, what am I going to do? Can I go on these trips? Can I go? I don’t really want to sleep over at people’s houses in case I have to use the toilet in the night and I don’t really want to take any risks because those risks might involve something horrendous and embarrassing happening.”

You know, my greatest fear was that someone would find out I had a disease that made me poo a lot, or, you know, that meant that I might have an accident in public or something like that. That carried on throughout my teenage years. And I kind of, I got used to my new normal. And to me that was, there was nothing to be done about it. I didn’t know there was anything that I could do about it. And I just lived my life really and just had periods of time where I didn’t do, I just tried to stay at home as much as possible and just coped with it, really. And it wasn’t until quite some time later that I realized I needed to do something about that. And the time came.

Hmm. Being diagnosed with a chronic disease like IBD at a young age, just like yourself, I can imagine that that can be the start of a very long journey, or what is often called the diagnostic odyssey. If there is a diagnosis at all. I mean, I wouldn’t consider yourself lucky, as you said, because it probably didn’t feel like being very lucky. But how did you experience that diagnostic journey?

Again, as I said, I struggle to remember a lot of it. It’s a long, long time ago. I remember it all being incredibly intimidating and frightening. And I remember having to have tests done, tests that as a child you never expect you’re going or you never want to have done. And feeling really, like, horrified by the fact that doctors were wanting to look at my bottom, put things into my bottom, having to have horrible treatments that made me, like the treatments before I had endoscopy. So, that made me go to the toilet loads and then not being able to eat and all of these things, as a as a ten-year-old, you just don’t really understand or I certainly didn’t understand.

I remember knowing that I was having these symptoms, but not understanding why, not really being brave enough to ask anybody. You know, poo wasn’t really a topic of conversation in our house. It was something that you said with hushed tones and that it was all a bit shameful and embarrassing. And doctors, for a ten-year-old little girl, sort of speaking to a consultant, it just wasn’t the thing. They would always direct their conversation at my mom or my dad. And so I would sit there quietly and just do as I was told.

When it comes to the diagnosis journey for other people. For lots of other young people that I’ve spoken to quite often the diagnosis itself is quite challenging. So, it might be that the young person has symptoms for a long period of time that’s either misdiagnosed or they’ve just learned to cope with and they don’t realize it’s actually the sign of something that needs treatment. And so that in itself can be a pretty long, long journey itself. And then getting that diagnosis too, there’s no one – it’s quite tricky to diagnose IBD. The symptoms are quite similar to lots of other issues and conditions, and so getting the right tests and treatments done aren’t always easy.

And when that finally does happen, it’s about finding a treatment that works. And that’s all part of the journey as well. And again, as I said before, there’s treatments available, but no, there’s no guarantee that any of those treatments will be the right treatment. So, it’s about finding those treatments, and then it becomes about adapting and changing your day-to-day life to fit around when you’re not well and when you are well and when you’re having symptoms and when you’re not. And then for me and for lots of young people that I speak to, it’s the learning to cope with the, or it’s the impact on your mental health of having to cope with a chronic disease.

And we’ll come to the mental health aspect later on. But also in this regard, when living with IBD, which role do diet, physical activity and lifestyle choices play?

I might have to swerve this one a little bit because it’s a really, really tricky question and it’s something that so many patients feel quite passionately about. But there’s very little research. There’s no evidence that specifically says that diet has this impact on your IBD, that you should eat this and you shouldn’t eat that. But there’s a great deal of opinion and there’s also a great deal of, there’s a lot of patients who will find that certain things may affect their symptoms or their IBD or, and again, nothing, there’s nothing that fits everybody. And so, whereas I don’t find that diet impacts my IBD at all, I know people where it really does. So, it’s a really tricky subject to answer.

The way I tend to look at it, especially when I’m talking to the young people I support, is actually if you think about things like physical activity, diet and all those things as something that is really important for everybody, whether you have IBD or not, and actually that by looking after yourself in that way and doing the best thing you can for your body, you’re giving it then the best chance, it’s in the best position to then start coping with the additional challenges that IBD gives you. It’s also something, for me it’s about control as well, because I think when you have IBD, you can feel very much out of control.

Your body doesn’t feel like it’s in your control, and then you’re having tests that leave you feeling a bit out of control and you’re not really in control of the treatments that you can take as well. So, I find that can be quite impactful on mental health as well. And if there are things you can control, so you can choose to eat what you eat and to eat healthily as best you can, you can choose to try and get exercise if your symptoms will allow you to, suddenly you are having a little bit of agency in your own wellbeing. I think that’s really important.

I see. Now, one of your own sons was diagnosed with IBD as well. That must have felt quite weird on the one hand, but on the other hand you probably knew better what to look out for and probably approach this whole subject differently than how it was approached doing your own childhood.

Absolutely, yes. So, nearly six years ago now, one of my children, my middle one, my middle son was starting to get sick and he started to have tummy pain and he started to stop or he didn’t want to eat very much. And he got thinner and paler and just had absolutely no energy at all. For a little while, even I didn’t recognize what was going on with him, but it didn’t take long. And then, I think, he said to me one day: “Mummy, I’ve got a bubbly tummy.” And he started going to the toilet more often. And then I knew and it was, for me it was quite clear what was going on and it was heartbreaking. It was really heartbreaking.

My son’s diagnosis was a really quick process because I was in the position where I had enough knowledge that I could say: “Okay, I think I know what this is. Straight to the doctors!” And my doctor, who is also his doctor, who I’ve had for quite some time now, he’s always been very supportive and understands I know my symptoms and my body quite well now. And he said: “Well, if you think that’s what it is, then let’s go with that.” And he was sent for tests, and his diagnosis journey was really quick. It was all so very different. There’s pediatric IBD teams all over the country now and he was sent to an amazing pediatric IBD team in Cambridge who have cared for him just wonderfully right from the start and cared for me as his family as well.

Nowadays, it’s very much more focused on the patient and helping the patient understand and engaging them with their own condition, which is really important. I think the biggest impact of my son’s diagnosis was actually, interestingly, on me, in my understanding of the disease as well when I realized that he had IBD. He actually has Crohn’s disease. So, obviously there’s differences there, but it’s kind of under the same umbrella term. And I realized that my lack of understanding of IBD and my lack of willingness to engage with IBD throughout my life, that had to change because the last thing I wanted was for him to struggle the way that I had throughout his life with IBD.

So, I made it my business to start learning all there was to learn about IBD and to start talking about my condition, which is something I’d never done before, to start engaging with other patients who had IBD, which I’d never done before, really, and to really engage with the health care team as well and make sure that he didn’t feel that he had to keep it to himself about his condition, that he wasn’t embarrassed by it, and that he felt he could always come and speak to me or his health care teams if he needed to. And so, actually, our trips up to the hospital, which are significant, became a really fun experience and we always made sure we had a really nice lunch when we were there.

And for him, despite the fact that it took a little while to find the right medications for him and the treatments that he has are, you know, something that took a little while for him to become comfortable with. He has to self-inject, which kids don’t necessarily, aren’t particularly keen on doing, that kind of thing. Actually, it’s been a really positive experience for him. And once he found the treatment that worked for him, he’s been in remission ever since. He’s now been in remission for about four, four and a half years, and he is really well and he’s grown and he’s obviously twice the size he was, well, he is ten now.

And actually, I check in with him sometimes about how he’s feeling and how he feels about his IBD. And he says: “Oh, I don’t even think about it to be honest, I hardly know I’ve got it, really.” And to me that’s that speaks to me so well, because I certainly wasn’t in that position when I was 16 years old and coping with my IBD. But actually all of that happening has had such a massively positive effect on me too, on me learning about my disease and on me starting to kind of try to focus on, understand and then begin to heal all of the traumas that I’d gone through, all of the ways I’d learned in order to cope with those traumas, in order to cope with the symptoms and so on.

And the personality that I built up around that. So, the anxiety and the sort of fear of taking risks and all of those things. And then after that it wasn’t long until I decided that supporting my son was amazing and I felt like it was a really positive thing. And actually, I realized that there were lots and lots of other young people out there who maybe didn’t have that support or whose families didn’t have that kind of support, who may have been struggling like I did. And that’s when I decided I needed to do something.

To be continued …