Living with Ulcerative Colitis: Claire Carden's Inspiring Story

Join host Brandy Schantz on "Living Chronic" as she sits down with Claire Carden, a young woman who shares her unexpected journey of being diagnosed with ulcerative colitis at just 17. Claire opens up about the challenges of navigating a sudden diagnosis, the impact of COVID-19 on her hospital experience, and the resilience she found in advocating for herself and others. Discover how Claire's passion for research and advocacy led her to create a supportive online community and an inspiring Instagram account, "Cooking Through Colitis." This episode is a testament to the strength and adaptability of those living with chronic illness. Tune in for an empowering conversation that highlights the importance of support systems and self-advocacy in overcoming life's hurdles.

Transcript

Brandy Schantz (00:01.221)
Hi, you're listening to Living Chronic. I'm Brandy Shantz, and I'm here today with Claire Carden. She has all sort of colitis and has a heck of a great Instagram account. Her mom's a chef, sharing great recipes, great tips on living with IBD. So welcome, Claire.

Claire (00:20.439)
Hi, thank you so much for having me.

Brandy Schantz (00:23.261)
So tell me a little bit about your journey. When were you diagnosed with ulcerative colitis?

Claire (00:28.686)
I was diagnosed when I was 17 in 2021, in like the spring of 2021, and I had never really had symptoms before that, but suddenly I was having like a lot of bleeding, and my pediatrician at first brushed it off as like probably hemorrhoids. Not sure why a 17 year old would have hemorrhoids, but she didn't check and...

my symptoms just continued to get worse and eventually we did find out that it was IBD after I passed out from blood loss and had to be admitted to the ER.

Brandy Schantz (01:08.937)
I always love how we finally get our diagnosis after something catastrophic. It's always, no, it's nothing hemorrhoids until you're on your way to the hospital.

Claire (01:18.67)
Yeah. So that was my diagnosis. It was very sudden, very unexpected. We didn't know really much about IBD. And yeah.

Brandy Schantz (01:34.943)
Well, I don't think most of us know anything about IBD. I remember asking my doctor what is Crohn's disease when he told me I had it. It's a scary diagnosis, especially with the I don't know factor. And it must be additionally so being so young. What did it feel like to go through this at such a young age?

Claire (01:48.919)
Okay.

Claire (01:56.842)
Yeah, I'd never really had any major health complications before. So this was quite shocking for me and my parents. I ended up switching from my pediatrician to like the adult care as soon as I turned 18, which kind of made it even scarier because I was like, when I was hospitalized, I was in the adult ward. I had like adult doctors.

And I would, remember my friend who had cancer at the time, they're cool, they're good now, but they would tell me about like how they saw like a therapy dog in the hospital and I'd be like, man, they don't even let my mom visit me. Cause it was like COVID time, it was on lockdown and it was just, the visiting rules were very difficult.

Brandy Schantz (02:39.102)
gosh, no.

Yes.

Claire (02:49.376)
So I would say being young and not being in pediatric care was quite scary.

Brandy Schantz (02:55.881)
When the COVID timeframe, mean, obviously I had already been diagnosed with Crohn's disease for quite a bit of time and I had, you know, all my medications, which of course makes you immunocompromised, which made COVID just a bit more difficult. But I remember saying to people all the time, I'm not so scared of dying, but I am scared of going to the hospital and being alone because that's hard.

Claire (03:20.483)
Yeah.

Brandy Schantz (03:22.719)
I think everybody who's ever been hospitalized can tell you that having your friends, family, loved ones come in and support you is what gets you through that kind of an event.

Claire (03:33.006)
Yeah, absolutely. My second surgery, which was in January 2022, which was my Barbie butt surgery, they wouldn't let my parents visit me. Like, it was crazy. And my mom was like, she's like 18, like, let me in. But obviously it's like safety precautions. It's just so difficult on like a human level.

Brandy Schantz (04:00.667)
It really is. I think for many of us, if we ever go through something like this again, and goodness knows that none of us want this, I hope that we have better procedures in place to factor in the human experience because I think many of us were the same. We were more scared of being alone in a hospital than the actual health risks, which, you know, of course need to be weighed, but you know, what a scary time. And especially

That being your experience to be diagnosed with Crohn's disease, or I'm sorry, ulcerative colitis at such a young age, it's gotta be super difficult. You also had quite a few blood transfusions.

Claire (04:42.208)
Yeah, so between my like...

diagnosis in spring of 2021 and my colectomy in winter of 2021, my symptoms just got really bad really quickly and my most worrying symptom was the blood loss. And I was just losing so much blood continuously that I kept having to get blood transfusions. We tried to schedule them a few times, but usually I would just kind of like pass out and have to go to the ER. And...

Brandy Schantz (05:10.569)
Mm-hmm.

Claire (05:14.574)
They really jump on you in the ER when your hemoglobin is that low. They're like, we need to get you back immediately. But I hated doing that because then I'm like, they're going to hospitalize me again. Like I don't want to go back to being in the hospital. So yeah, because my symptoms to start with were

Brandy Schantz (05:21.725)
Mm-hmm.

Claire (05:36.834)
bleeding and constipation, which is not necessarily typical of IBD symptoms. Most people think of the opposite issue from constipation, which I think is why it was a little difficult for me to get diagnosed. And it was just kind of an unusual case, and I was not responding to any of the medication well. I was allergic to Humira, not on the same level that you had with...

Brandy Schantz (05:41.459)
Right.

Claire (06:05.9)
I know you had drug-induced lupus, right? But I would get hives, and it was just getting worse. And I tried other biologics. I was on steroids. I was on the whole everything. But nothing was working. It just kept getting worse. And eventually, they're like, you're losing too much blood, and your colon is in really bad shape, and we just need to take it out.

Brandy Schantz (06:08.453)
Mm-hmm, yes.

Mm-hmm.

Brandy Schantz (06:28.995)
And you know, those are difficult decisions to make, but it was so fast for you. Did you feel pressured or did you feel like, you know, I think this is the right step.

Claire (06:34.254)
Okay.

Claire (06:39.84)
I think that I was just so completely miserable that by the time they said we have to do a colectomy, I was like, thank God. Like, please just put me out of my misery, make me stop having pain, and like, let me get back to living my life. Because I was on a gap year at the time, which I had planned in advance, but I wanted to travel, not be hospitalized.

Brandy Schantz (06:50.643)
Yes.

Brandy Schantz (07:05.511)
Yeah, there are better gap years. There are better gap years.

Claire (07:09.002)
I do joke that it was like convenient timing, but it was a little bit of a bummer.

Brandy Schantz (07:14.751)
Definitely a bummer, definitely a bummer. I think most young people prefer to backpack around Europe or travel the United States versus go to the hospital and learn the hardest lessons in life real fast.

Claire (07:23.171)
Mm-hmm.

Claire (07:30.902)
Yeah, I think another thing that's interesting is that a lot of people live with IBD and have symptoms for many, many years. And I didn't, like, I was diagnosed and then I had surgery. So I never like experienced being on biologics long-term. I'm not medicated anymore because I have an ostomy. And so my experience is quite different from a lot of people.

Brandy Schantz (07:41.918)
Mm-hmm.

Brandy Schantz (07:54.939)
Mm-hmm. Well, yeah, that is very different. And in some ways, it sounds like a really great option because there so many side effects that come with the medications. And, you know, many of us have been on multiple ones. I've been, I feel like through quite a range of medications at this point. And for some of us, we really hate the medications and getting off the medication sounds lovely.

Claire (08:08.205)
Mm-hmm.

Claire (08:25.1)
Yeah, I mean...

Brandy Schantz (08:25.151)
them.

Claire (08:26.954)
I've been so lucky with my ostomy bag. Like, I really get along with it. I've never had a blockage. I've never really had any complications with it. After I found what products worked for me, it's just been pretty smooth sailing. I mean, obviously, it is something that I have to think about. It's a way that my body is different from most people, and it does affect my daily life, but so does having IBD and taking medication. So it is a trade-off, definitely.

Brandy Schantz (08:55.101)
No, yeah, for certain. You know, obviously people after my own heart, another thing I love is you and your mom immediately became involved. And that is definitely my way of coping. That's what I love to do. Volunteer, join a board, get your voice heard, get out there, fundraised, advocate, all the things. I love getting involved. And you and your mom became involved. Your mom is on the local board of

Claire (09:05.134)
Mm-hmm.

Brandy Schantz (09:23.827)
the Crohn's Colitis Foundation where you will, where you used to live. You're now away at college, but tell me a little bit about what that was like.

Claire (09:25.729)
Mm-hmm.

Claire (09:34.828)
Yeah, I mean, as soon as I was diagnosed, I started doing research because that's just how I am. So I ended up building a lot of knowledge really quickly about IBD and then about ostomies. And I was in these like Facebook forums and stuff and I would see people asking all these questions and it just like...

It was upsetting to me how little people knew about their conditions and how little education there was for them in the hospital or by any medical professionals really. So advocacy, raising awareness and like supporting patients is so important to me because I had to do all my own research. I don't mind that because that's who I am, but most people don't want to or don't have the ability to.

Brandy Schantz (09:59.551)
Mm-hmm.

Brandy Schantz (10:22.623)
Mm-hmm.

Claire (10:25.428)
So that's just kind of where my wanting to help comes from. And then my mom is just awesome and like loves me and she also has her own autoimmune problems. But she's been the chairperson for the Northern California Crohn's and Colitis Foundation Gala the last two years and has like helped raise so much money for that foundation, which is amazing. And I'm like really proud of her and really grateful for her.

Brandy Schantz (10:55.315)
You know, obviously I believe in it, but I think that that's the way forward. Nobody's going to stand up for you, but you and your loved ones, right? And I learned that many years ago, many years before I was diagnosed with Crohn's disease. and then later my other diseases, but it's true. We have to be our own advocate. Nobody's going to look out for you, but you. And most of us are pretty proficient in our.

personal diseases, challenges, because we have to be. And what makes us so strong as a group is we each go after what our strength is and contribute and share, and then the others are going after their strength and sharing. And when we're all together, we learn from each other. And it's that group work, that advocacy, that care, that strength.

together in numbers to come together and make things better that really gets us through this. And your mom is a chef. So she really knew what to do.

Claire (12:01.762)
Mm-hmm.

Claire (12:05.866)
It's funny because, I mean, she says like she's a Jewish mother and she loves like feeding people good food. And there I was like wasting away, not being able to digest anything. And she didn't know what to do. She was like terrified and felt like she was failing in some way. And so when I started doing research into like nutrition and stuff for IBD,

Brandy Schantz (12:19.187)
Mm-hmm.

Claire (12:33.998)
and feeling a little more empowered about that and like making decisions about what I was eating and then bringing her into that. I think that that was like a really good bonding experience for us and empowering and that's why I started my Instagram account cooking through colitis. It hasn't been so active lately because I have been busy at uni but I originally started it to share what my mom and I were making for me to eat because there are so many different diets for IBD and

Brandy Schantz (13:02.527)
Mm-hmm.

Claire (13:03.212)
A lot of them are really restrictive and you have to be creative to come up with something tasty.

Brandy Schantz (13:08.995)
That's true. That is true. And for people like myself who are not very creative in the kitchen, these kinds of recipes are everything because that's all I do is I reach out for a recipe. I'm not going to come up with anything on my own. And if it were left up to just me with no input, no help, I'd just be eating grilled fish and chicken and

know, steamed vegetables every day, but not the yummy vegetables, the ones that don't cause tummy upset. And only the IBD patients know what I just said.

Claire (13:45.1)
Yeah. Yeah, I did. I worked with an IBD specializing dietitian kind of during my transition from being really ill to having an ostomy, which I think was super helpful because

When you have IBD and then when you, if you get an ostomy, there's so much fear around food that in the hospital the doctors were like, never eat leafy greens, don't eat anything with seeds. And I was like, I really like kale salad. Like I would like to be able to eat that again. so working with a dietician who like could help me reach that goal and reassure me that I wasn't going to like injure myself.

Brandy Schantz (14:29.512)
Mm-hmm.

Claire (14:30.466)
It helped me gain a lot of confidence and helped me get back to eating what I actually enjoy eating.

Brandy Schantz (14:37.277)
It's such a big important part of our lives. Nobody thinks about how much joy food brings us until you're restricted from eating it. And it really is, or sometimes just a comfort thing. You know, don't feel well, you're having a rough weekend. Unfortunately, you're not feeling well. You're not, you know, you're having a rough week at work, a day, you know, a terrible weekend. Maybe, you know, you were supposed to go somewhere, now you're at home.

Claire (14:44.885)
yeah. I mean, it's such a social thing for people too.

Yeah.

Brandy Schantz (15:04.508)
You know, my pre-cron's days, that would include something disgusting, you know, order pizza, drink wine. And of course, if you're not feeling well with Crohn's or colitis, that's certainly not the way to comfort yourself.

Claire (15:10.776)
Mm-hmm.

Claire (15:17.24)
Yeah.

Brandy Schantz (15:19.323)
So it just brings about a different life. And most people, was, almost everybody I speak to say the same thing. We're scared of what our life is going to look like with this disease. What does this mean for me now? Because there's always, there's never a lot that doctors can tell you because they don't really know what's going to happen next or how your disease is going to progress. And I know it must be even more frightening as a young person, but you really are living life.

Claire (15:29.731)
Mm-hmm.

Brandy Schantz (15:49.459)
to the fullest. You didn't just go off to school, you didn't just go to a local college, you're not down the road from mom, you're in an entirely different country. How much bravery does that take? you are definitely living the life. What made you to decide, hey, I'm just gonna pick up and I'm going to an entirely different country? Entirely different country.

Claire (16:00.6)
Yeah.

Claire (16:12.034)
Well, I'd actually done all my college applications before I got sick. So I'd already like gotten into a university in London and deferred for a year because like I said, I'd planned to take a gap year. And like throughout that year as I was ill and then recovering, I was never like, I don't want to go. I was still like, yeah, that's my plan. Like I'm going to get better and I'm going to go to London.

Brandy Schantz (16:19.231)
How smart.

Brandy Schantz (16:25.727)
Okay.

Brandy Schantz (16:36.243)
Mm-hmm.

Claire (16:42.014)
And I did. mean, I was so lucky, like I said, with my surgeries, they went well. I'm so much healthier now. I think my parents were more nervous about me leaving than I was. But the whole experience of being diagnosed with IBD and being sick changed me so much. And I think mostly for the better. I have so much more self-confidence now. I can advocate for myself.

And I think that really helped me mature enough to like go abroad and live on my own. Because it's just been amazing. Like it's been such a good experience for me. I'm athletic now. I was never athletic before I was ill. But now I'm like, all right, like let's see what we can do with this body after like a near death experience. You kind of want to like, I know that you, you're an athlete yourself, right? You ran.

Brandy Schantz (17:37.598)
Yeah.

Yes, yes, I was always a runner, which, you know, that did change for me. But I have diseases on top of diseases, so I did still run and do triathlon through my Crohn's. So it's amazing what your body can do. And I think, you know, you're right. Having, going through these kinds of events in your life, it really does give you a boost of confidence to say, hey, let me out there. I can do it.

Claire (17:43.651)
Yeah.

Claire (17:58.691)
Yeah.

Claire (18:05.622)
Yeah, definitely. Yeah, I do my like main hobby now is circus arts. So I really enjoy like aerial silks and stuff like that. And just kind of seeing what I can do. And then I go to uni for costume making, which is great and creative. And I have a ton of friends here and it's been great.

Brandy Schantz (18:28.721)
Do you have any plans for what you want to do with costume making?

Claire (18:32.781)
I don't know, like people keep asking me, are you gonna stay in London? What are you gonna do? I'm like, I don't know. The more I put down roots here and make friends, the more I wanna stay in London. And same with like professional connections as well, that's all happening here.

Brandy Schantz (18:37.502)
Yeah.

Claire (18:53.408)
I'll likely work in theater for a little while since that's really what we're trained to do on my course, but I'd love to branch out into like circus and burlesque costume at some point because I'm really interested in those areas.

Brandy Schantz (18:58.879)
Mm-hmm.

Brandy Schantz (19:03.903)
That's great. Yeah. I really love that. You know, what better way to really show people that it can be done? think so many people just think, well, I have IBD, especially if it's something severe, you know. We have a range, just like everybody does. There's a range from manageable, take your meds, move on with your life to hospitalizations, bleeding out.

blockages, you know, all the things you've talked about that we've heard about on this podcast a million times. And when you're going through that, you think, no, I don't think I can go any further. But you're really showing that you can, you can do anything. It's, it's no problem. New body, new life moving forward. And I, I really love hearing that and can't wait to hear more about, you know, what you do next.

Claire (19:58.414)
Thank you.

Brandy Schantz (19:58.751)
you know, with this kind of a skill. I mean, maybe one day, I don't know, maybe one day can convince you to work with me. I need some better clothing for pots. You know, I look for medical grade compression and it's everything that my grandmother used to wear back in 1985. And I'm like, no, why, why, why, no, why I'm not wearing that.

Claire (20:06.798)
Thank

Claire (20:13.048)
Yeah.

Claire (20:18.402)
Yeah, adaptive fashion is a huge interest for me. I have worked a little bit with the company Spoonie Threads on giving feedback on some other ostomy products, which was super fun. And I absolutely agree. We need more fashionable adaptive options.

Brandy Schantz (20:30.655)
That's awesome.

Brandy Schantz (20:35.943)
We really do. Like, why do we all have to look like our grandmothers? I don't want to do that. I'm still youngish.

Claire (20:39.818)
Yeah, I've been getting into like fun compression socks lately. But yeah, so I'd love to do more with that in the future.

Brandy Schantz (20:44.451)
Brandy Schantz (20:50.205)
Yeah, definitely. Compression's my world. And I am so sick of medical grade compression being the ugliest things you can possibly imagine.

Claire (20:58.83)
Yeah.

Brandy Schantz (21:03.433)
So I'm even more excited that you're doing this. So you've done so many great things. You've really overcome. I talk all the time about how what people miss about disabled people is that we're so resilient. We're so malleable, ready for change. We can take on anything and you're just living the example. I can talk all day long, but seeing somebody like you pivot and say, it's fine. I got it again.

That's the living proof. So what advice would you have for other young people who are going through this and thinking, how do I deal with this?

Claire (21:41.838)
I would say having a good support system is so important. If you don't have people physically in your life that can relate to what you're going through, I absolutely recommend reaching out online. I made some really great online friends when I was ill, mostly through Facebook forums and stuff.

Brandy Schantz (22:00.357)
Mm-hmm.

Claire (22:00.992)
And then I also had, I mean, my high school librarian was like my hospital buddy throughout my illness. She has Crohn's disease and we just became really close and could just like complain to each other and like get it. And then of course my parents are amazing and supportive. A lot of my nurses were like so sweet and supportive. And.

I mean, a support system can look different for everyone. It could be like a religious community or like any friends or family. But I think that's so important. And don't be afraid to ask for help from those people. I think it can be scary, like independence and like doing your own research is so important. I know a lot of people get ostomy bags and they just don't want to touch it. Like they'll have

Brandy Schantz (22:40.063)
Mm-hmm.

Brandy Schantz (22:54.239)
Mm-hmm.

Claire (22:54.76)
spouse or a caretaker change it for them and that's like okay if you're planning to stay home all the time but if you do want to like get back up and out there you have to be able to deal with your medical situation on your own and know the details about your about your disease or your conditions yeah

Brandy Schantz (23:02.655)
Mm-hmm.

Brandy Schantz (23:14.781)
No, absolutely. You have to get through a lot, really. Squeamishness, blood, injections, ostomy bags. There's a pretty long list that we may or may not have to get used to. And yeah, that is important. It's good advice. Well, thank you so much for coming on the show. I'm so appreciative you came. I love everything you're doing. And it's just so important to show people that there are

chronically ill people out there living their best life. Your life isn't over. You're better than you were before, whoever you are 2.0 and you're proof of that.

Claire (23:58.06)
Yeah, thank you so much for inviting me on.

Brandy Schantz (24:00.937)
Thank you.