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 second episode of our two-part special we talk about the creation of “Me (and IBD)” and Jen’s plans for future updates and add-ons. In addition, we are looking at the aspect of mental health and what it takes to become a powerful patient.

You can find the first part of the interview here.

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

And we’re going to talk about that something now because based on your research or dealing more with the topic of IBD, you also wrote and designed “Me (and IBD”, the coloring journal for young people with IBD. So, when did you have the idea to create such a resource and how would you describe the process of creating it?

Well, I had the idea, it didn’t start off with the idea of creating a coloring journal, actually. I started offering volunteer peer support to other families who had young patients or newly diagnosed young patients with IBD and to the patients as well. And that was, it surprised me how many people there were that wanted this support, and there wasn’t really anything available. My interest has always been around the impact of chronic disease on mental health. And I could see there were so many young people struggling with anxiety, struggling with low mood and struggling with a range of difficulties as a result of their IBD and just not having the right kind of people to talk to, the right support.

I started offering this peer support and I was doing that for maybe a year or so and having the most incredibly positive responses. But my frustration was that I was only one person doing this and restricted in time. There was only a limited number of people that I could cope with alongside having three children and working and all of those things. So, I started to think about whether there was a way that I could kind of condense what I was doing in my peer support into something that could be reproduced and distributed more widely. And it was, someone gave me an idea and said: “Oh, you know, you like drawing, you like art. Is there something that, could you use that to do something?” So, I set about my first pictures thinking: “Oh, maybe I could do the odd, like, page or something that people could print off and use.” And I got the bug and I realized that this was something that perhaps could become not just an individual sheet, but actually a book.

So, one of my children taught me how to use it, my first ever drawing software on an iPad. And I realized that in order to turn this into a coloring journal, I would need to know a little bit about design, know a little bit about how to use digital software, because I’d never touched any of that stuff before. In fact, I thought that technology was something way beyond me. So, I set about teaching myself how to use design software and at the same time I was doing all of the drawings and kind of planning, creating, researching content. And that took quite some time, and it was quite challenging [laughs]. And I’m still learning, but I’ve got to a place where I feel comfortable doing it now. And, and so the beginnings of the coloring journal happened.

Now, I took it to my son’s IBD team in Cambridge and said: “This is something I’ve been doing. What are your thoughts on it?” And they were so incredibly supportive and fascinated and interested and really super supportive all the way through and said: “Well, actually if you can make it into something that you think is ready for patients to look at, we would love to have copies to give to our patients so we can see what they think. And we’re very happy for you to kind of test it on them and see if it’s of benefit.” And so that’s where it started, really. So, I was printing copies off and sending them out to patients. And I’ve had the most amazing feedback.

That sounds great. That was going to be my next question. How has the feedback been like, but you just answered that [laughs]. And how widely is it being distributed as a resource? Has it been, like, has there been a major print run or is it being distributed to other hospitals, too?

The difficulty is that so far I’ve been doing this all myself, and it’s all self-funded because when you do something, well, certainly for me, I wanted to prove that it was of value first, which, I’ve done that now, and I wanted to kind of get it out to people. So that I could do that it’s been seen by endless health care professionals. It’s been used by endless patients and families. I think, so, Addenbrooke’s Hospital in Cambridge, there it’s now part of their standard care. But they tested with an, I can’t remember how many, somewhere between 50 and 100 patients initially. It’s now being used by hospitals in Scotland, funded by a charity, an IBD charity in Scotland. And now my difficulty is because, as I said, so far this has been self-funded, it’s about, all I want to do is to get these coloring channels to patients. And the best way, in my opinion, to do that is via the hospitals, because the hospital, the IBD teams know which patients need them and which patients would benefit from them.

And I’m in conversation with lots of hospitals and they’re all super positive and lots of them will say: “Oh my goodness, this is something we really want for our patients.” But the difficulty we have in the UK is funding. So, funding for anything within the NHS is, I would say, impossible. It’s close to impossible, and so the frustration is that that’s my barrier at the moment. So, I’m currently looking into ways that I can access funding or help the hospitals to be able to provide these coloring channels to their patients. Because I believe I’ve got endless anecdotal evidence and qualitative data to say that these things are making a difference.

As an example, I had a lovely email from one of our IBD psychologists who’ve been working with patients with the coloring channel, and she said that actually she thought she’s found that with her patient she needs to do far fewer introductory sessions because the young person is already coming to her with a knowledge of IBD and and her digestive system and that kind of thing. So, you know, it has positives not only for the patients but actually in terms of time when it comes to the health care teams, too.

I see. Now, you mentioned it being basically peer-reviewed by health care professionals as well as by patients as well, which is really important, I think, to include the patients right from the start. That brings me to my next question, which is why is trustworthy, reliable and understandable information important? I mean, most of the time people ask Doctor Google and what not, which has its pros, but also its cons. So, I guess that was very important to you to involve the health care professionals or psychologists and the patients too right from the start?

Yeah, absolutely. I think the problem is that with health information, there is a lot of health information available if you want to go searching for it online. But the problem is it’s so vast, there’s so much and it’s not always relevant. And specifically for young people as well or children that have been newly diagnosed, you could go online and you could learn about IBD and you could be utterly terrified. You know, there’s no way that the information is sort of filtered correctly. So, you could read, as a newly diagnosed patient, you could read that: “Oh my goodness, I’m going to have to have surgery.” “Oh, my goodness, this could happen.” “I could get cancer.”

There’s so many stories which are all valid stories, but they’re not for everybody. And also you don’t know if all the information is completely valid. There’ll be individual patients saying, talking about things on social media, for example, and it will be their experience of IBD. But that could be entirely different to another person’s experience of IBD. So, I think what I wanted to do with “Me (and IBD)” was to kind of gather together the most important, the basic information that you might need to know, a young person would need to know at diagnosis, to make sure it was absolutely accurate and delivered in a way that young patients would really engage with and understand and to have it all in one place. So, actually the young person could say: “Okay, I want to learn all about it.” And they wouldn’t have to go from website to website, social media platform to social media platform trying to find things out that they could kind of do it there.

And to get it in a kind of friendly, supportive, engaging way as well. I felt like that was really important. And it was by working with the health care teams themselves, by working with the IBD team at Addenbrooke’s Hospital. That’s how I ensured everything I’d collated was accurate, age appropriate and also up to date as well. And I’m in constant contact with the teams and I can, if something new happens or something changes, then I can make sure that my coloring journals always align with what they say and what, you know, the care they offer, too.

Very good. Are there any plans for updates or add-ons or even a second coloring book? You also mentioned mental health, which would probably be a huge subject.

Well, rather excitingly, just last week I had my first printed copies of my second or my supplementary journal, which is called “Looking after My Mind”. And it deals with mental health and chronic disease. And again, I was almost going to get up and show you [laughs], on a podcast, but it’s kind of trying to help young patients understand from early on about what it is to have a healthy mind and how sometimes or what you can do to ensure or to try to make sure you have a healthy mind and then think what can happen when things go a little bit wrong and you’re starting to struggle.

So, and then how having a chronic disease can make an impact on your healthy mind too. All done in a really kind of gentle, careful way so it doesn’t become too frightening, so it doesn’t kind of write the story for the young person so they start to feel that that’s how they should feel. But I know when I was struggling with the impact on my mental health, to have had something like that would have been super useful. So, that’s out now for testing, again at Addenbrooke’s Hospital in Cambridge. It’s been approved by a range of clinical psychologists and teams. It’s all ready to go, but I’m just waiting to start to get feedback on that one.

And when it comes to other coloring journals, I mean there’s just, there’s endless topics that I’d like to create content on. So, surgery, for example, on discussion with the health care teams, it was decided that there shouldn’t be too much about surgery in the first coloring journal, because it’s not always relevant to young patients, and it can be quite scary. But then there are plenty of patients who will need surgery. And I’ve had patients come to me and say: “Can you do a coloring journal all about surgery?” So there’s that. And then there’s looking at other people who are impacted by IBD. So, actually would there be adult patients who’ve been newly diagnosed who would want to have that kind of information, too? It would need to be presented slightly differently, but it’s still the same concept.

And then I’ve had families say to me: “Actually, my young person, their siblings, their brother or their sister have really struggled with their diagnosis. Is there some way you can adapt the coloring journal so that it’s relevant not just to the patient, but to siblings or to children of older, of adult patients who’ve been diagnosed.” And then looking even further forward, actually, I feel that this is, I really sort of strongly believe that this is something that doesn’t just, isn’t just relevant to IBD, that actually there are endless chronic diseases where young patients can be diagnosed and actually this could be translated into whichever that disease might be. Again, this is very long-term stuff, and unfortunately it’s not something that I can, you know, I’m doing as much as I can, but I have a limit to my funds and I have a limit to my time [laughs]. And so it’s something that if I can, you know, obtain funding for in the future or I can get interest from people in the future, then it would be something I’d love to do.

Sounds great. We previously mentioned that shame and embarrassment and probably ensuing isolation and loss of control are major factors and on the other hand, probably staying positive or trying to stay positive and cope with a condition. Did you experience any stigma associated with IBD apart from feeling uncomfortable yourself?

Well, it’s so tricky because I was so good at hiding what was wrong with me because of the fear of stigma, the fear of what people might say or that I might be, people might think it was disgusting or I might be teased. So, for me, it was never really about that. I think the problem is IBD involves the things that most people don’t particularly like to talk about. You know, nobody particularly wants to talk about poo or toilets or, you know, that kind of thing. And so, even if the stigma is becoming less, I think that you perceive it still, because societies don’t talk about poo, societies don’t talk about toilets and that kind of thing. And so for me, for example, I was, this was 30-something years ago where it was even more so that you don’t talk about these kind of subjects. It’s embarrassing. We all know we all go to the toilet, but we don’t acknowledge it. We pretend that we don’t. And there’s still an element of that nowadays.

And quite often when I speak to young patients, the first time we talk, they’re so embarrassed that they, you know, “I’ve got many poo …” and they kind of, they’re so ashamed of it all. And actually when I start openly talking about my own poo and like without having to refer to it as stool or some other form of, some other medical terminology, it really surprises them, but it has a really positive effect, helping them to feel like they can talk about it more. And it does lessen the embarrassment and the shame. But again, I think probably, like I said, my greatest fear was having an accident and not getting to the toilet in time. And I think that’s something that so many young patients fear, understandably so. And that’s all about the, you know, it’s not pleasant, but it’s all about what people will think and how it will be perceived by their friends or their family. So, there’s still a lot of stigma going on there with bowel conditions, I suppose.

Definitely. I’ve got a general question for you. In your opinion, what does it entail to become a powerful patient?

So, this is one of my favorite things because in creating the coloring channel, actually one of the first things I thought was: Oh, I want to make it about a very positive thing. I want to make this a really positive thing. And I want it to be not about, “Oh, poor you!” I want it to be about encouraging young patients to be powerful themselves and: “Oh, okay, I’m going to call them”, being a powerful patient. And so, when I was thinking about what would a powerful patient be, it would be all the opposite to all the things I was as a young patient. So, it would be about engaging with your condition and learning about it and trying to understand why it’s happened or how it’s happened and what happens in your body when your body’s flaring or when your IBD is flaring.

It’s about understanding your treatments or having some kind of say in what treatments your are taking and then understanding why it’s important to take them correctly. It’s about paying attention to your body. And if something’s not okay, if something starts not to be right, knowing that you have to, it’s important that you say: “Okay, I need to speak to my health care team, I need to speak to my doctor.” And it’s okay to do that. It’s about feeling comfortable or feeling confident enough in appointments. If you’re not comfortable with something or you don’t understand something, to be able to ask questions and say: “Actually, now, I don’t know why I’ve got to do this” or “I don’t understand about this. Can you explain that?”

And I felt like: To encourage all of these things in in young children, children and young patients when they’re first diagnosed, actually it’s kind of the real sweet spot to catch them then, because if you encourage these young patients to be powerful patients, actually it becomes natural to them. It becomes normal to ask questions and be engaged and to look after themselves. And so you’re creating powerful adult patients of the future.

So, since this is an interview on IBD, what are your plans for World IBD Day on May 19? Or does that even play a role because basically every day could be IBD Day, even though you’re in remission? What are your plans for World IBD Day this year and how important do your regard awareness days as such? By the way, this year’s motto is “IBD has no age”, and even though you’re focusing on young patients, you also mentioned adult patients. So, it kind of fits nicely.

Yeah, it’s a really interesting one. So, when you ask what I’ll be doing for World IBD Day? So, I probably, virtually every day, if, in fact, definitely every day I’m working either with patients with IBD or I’m producing social media content about IBD. So, really World IBD Day doesn’t have a massive impact on what I do anyway. I’ll continue creating content, I’ll continue speaking to my young patients. It’s a little bit, it’s sort of difficult to say, really.

I think awareness days are important because it’s a way to kind of, for people that don’t know anything about IBD, they might catch something or see something that they didn’t know about and it might begin to help them want to learn to understand a little bit more. I think another reason that awareness days are quite important is actually it brings together the communities, the IBD communities. It’s kind of like a place where everyone feels; “Maybe I can share my story today, and then other people will see that and share their stories.”

And it kind of just gives patients who maybe aren’t confident about talking about their condition a platform to do that, which is, in my opinion, super important. But actually when it comes to awareness for IBD, for me it’s an everyday thing, and that’s how it should be. It’s not about one specific day.

I completely understand. And that was actually the last question of our interview. Thank you very much for your answers. I’ve learned a lot, to be honest, quite a lot. And I really enjoyed your coloring journal. I can only recommend it and I’m looking forward to future updates. Thank you, Jen.

Alex, thank you so much. It’s been a real pleasure. Thank you.