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Crohns’ disease and Takayasu's with Artie Carden

By Hidden Disabilities Sunflower 28th February 2022Videos and podcasts, Sunflower Conversations Share

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

 

 

Crohns’ disease and Takayasu's with Artie Carden

We caught up with Artie who joined us in a Sunflower Conversation back 2020. Artie has hypermobility syndrome, Crohn’s disease and Takayasu's arteritis. After extended bouts of sickness and diarrhoea Artie sought a medical diagnosis, unfortunately it was this was a misdiagnosis of irritable bowel syndrome which was later changed to a Crohn’s.

Artie’s conditions are autoimmune and result in inflammation across the entire body which can be extremely painful. Artie is on a combination of medications and spends a lot of time researching so that when visiting the doctors is already armed with the information to support the treatment plan.

 

For support

 Check out Artie's social media pages

 

 

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

 

Transcript

Paul Shriever:

Hey guys. My name's Paul. Today, we're going to be talking to Artie Carden. Also with us today is Chantal Boyle. How you doing Chantal?

Chantal Boyle:

I'm very well, thank you.

Paul Shriever:

Nice to see you. Okay, so we spoke to Artie back in October 2020, and we're catching up again. How are things Artie?

Artie Carden:

I mean, I think they're reasonably okay, considering.

Paul Shriever:

Yeah. Well, it's nice to see you again and we appreciate you taking the time out to talk to us again. I'm just going to quickly go over the conditions that we last spoke about. Artie has hypermobility syndrome. This is when you have very flexible joints and it can cause pain. And this is summarized, obviously. Artie also has Crohn's disease. Crohn's disease is a lifelong condition where parts of the digestive system become inflamed. And Artie also has a very rare vasculitis called Takayasu's. Did I pronounce that right?

Artie Carden:

You've pronounced it better than most people tend to.

Paul Shriever:

I've been practicing.

Artie Carden:

Yeah. Takayasu's.

Paul Shriever:

Takayasu's. This is a group of disorders that causes blood vessel inflammation. It damages the large artery that carries blood from your heart to the rest of your body. Obviously you have a series of conditions and I'm... How are you coping?

Artie Carden:

It's been quite a rollercoaster for a few years. So I was diagnosed with Crohn's in summer of 2019. And then in 2020 was my Takayasu's diagnosis. Luckily the two of them are treated with similar medications. So I was already on adalimumab injections for Crohn's. I'd literally just started when the pandemic began. And then I was put on... I was put on steroids from June 2020 and I'm still on them.

Paul Shriever:

Has it been a bit of a rollercoaster in terms of trying to work out medication for your conditions?

Artie Carden:

I feel like I've been quite lucky that the adalimumab has been working and I've also been on mercaptopurine and I went on that first, back in, I don't know, probably when I was diagnosed with Crohn's, so since 2019. The steroids have helped to kind of control the Takayasu's and Crohn's at least when it comes to flares.

Paul Shriever:

Is one of these conditions any worse than the others?

Artie Carden:

They're both pretty bad. They're both autoimmune conditions. They're both inflammatory ones. They both can affect your entire body, basically, so I've had some pretty bad side effects or symptoms with Crohn's, including things like an abscess, those are horrendous, and that combined with my hypermobility syndrome means I have really slow healing. When it comes to Takayasu's, it can narrow all of your major arteries that feeds all of your limbs.

Paul Shriever:

I know that you got diagnosed recently. Is this something you've kind of grown up with? When did you become aware of this condition?

Artie Carden:

I think I was probably dealing with symptoms for around six years before I was diagnosed because I've definitely had some stomach problems for a while before I eventually actually got diagnosed. But it was, as I said, sort of brushed off as IBS and the appropriate tests were not done when they should have been. But no. When I was younger, I had no real dietary issues. I wasn't lactose intolerant. I didn't really have any of those issues at all until sometime around late teens to early twenties that it just sort of hit me and after, quite a awful bout of life things.

Paul Shriever:

Okay. So was it a flare that actually sort of spurred you into action? Into actually saying something's wrong here and I need to get this looked at.

Artie Carden:

Yeah, because even though I'd been dealing with some stomach issues for a while, it was just a whole other level of pain and... It was just so debilitating. I couldn't sleep, I couldn't do anything. I was so fatigued. Everything hurts. I was up most of the night, every half hour or so going to the bathroom, I was vomiting. I am not someone who's normally sick and the only times I ever do vomit is normally from food poisoning but I have sort of like a pattern that I know by now, that I'm normally sick once and then I'm fine. But I was sick like five times in one night and I was like, "This is not food poisoning."

Paul Shriever:

So did it make you feel permanently unwell? Did you feel... I'm just trying to understand how you felt in yourself.

Artie Carden:

Yeah, there was kind of just no break. Like a lot of people I've met as well since being diagnosed, it's often a lot of people, it's anything you put in your body can trigger worse or some kinds of symptoms. So that was kind of what I was dealing with at the time, that some foods made it a lot worse, so like lactose and anything particularly spicy. But eating any food just kind of made my symptoms go a bit awry. So there wasn't really any break from it unless I didn't eat.

Speaker 4:

You are listening to The Sunflower Conversations with Paul and Chantal. To learn more about The Sunflower visit our website. Details are in the show notes.

Chantal Boyle:

And you mentioned that initially you were told that it was IBS and I've heard but you're much more in tune with this area than I am. Have other people that you've spoken to, were they also diagnosed with IBS to start off with?

Artie Carden:

A lot of people I've met and spoken to have had sort of a diagnosis of IBS. Same for lots of other conditions that affect the stomach. Like my gran has diverticular. So yeah, she's had similar things. They're like, "Oh, it's just a bit of IBS. Just watch what you're eating." And it's like...

Chantal Boyle:

According to Crohn's & Colitis UK, there are 300,000 people in the UK that have Crohn's disease.

Paul Shriever:

Is this an ongoing journey in the sense that, in terms of what you eat, are you learning still about what works and what doesn't?

Artie Carden:

It kind of varies because I seem to have some very small amount of tolerance for lactose in certain foods. So for some reason I can go and eat fish and chips from like the local chippy. That doesn't affect me but if I eat crisps with dairy in... Like if I eat a packet of Walkers Cheese & Onion Crisps, then I get quite sick.

Chantal Boyle:

With everything that you've told us, can you expand a little bit more on how Crohn's disease impacts your life with regard to work, relationships, your social life?

Artie Carden:

A lot of it was that I would be using the toilet so many times a day. When I was at university sometimes I'd have to go in the middle of lectures more than once. Even if it wasn't particularly painful, it was just like a constant diarrhea for me, for years that nothing made any difference, whether I... What I ate. But yeah, so that made trying to sit and learn quite difficult because I'd constantly be thinking, "Oh my God, do I need to go to the toilet again?" I'm actually going to be doing a round table this evening about disability and education so...

Chantal Boyle:

Oh, that's brilliant.

Artie Carden:

Yeah. It's just like... I think I got, quite accidentally, lucky quite a lot of times because even with the friends I have, my family... Like me and my gran have different conditions but they run in the same sort of issues. So she has a lot of stomach issues. We both have types of vasculitis. We are on similar medications, things like that.

Speaker 5:

You are listening to The Sunflower Conversations with Chantal and Paul. To share your story, details are in the show notes.

Paul Shriever:

Do you find this a drain on you? This condition, does it affect you mentally? Does it give you anxiety or make you just feel, I don't know, frustrated and because you must be feeling... Having to deal with this day to day, it must be challenging.

Artie Carden:

It's similar with all of my conditions, really, is that the problem is not necessarily the condition, but the society we live in. But everything I really have problems with any of my conditions always tends to be a lack of knowledge and lack of accessibility.

Paul Shriever:

Are you still wearing the Sunflower? Are you using it?

Artie Carden:

Yes. I actually use it to hold my mask because it's got a little clip on the end, so I don't lose it. So if I need to take it off at any point, it'll still be around my neck. So yeah, two in one.

Paul Shriever:

Do you feel you need a visual indicator? Why do you... You still wear it. Why do you wear it?

Artie Carden:

I wear it because I don't necessarily feel like disabilities are invisible. I just think that the public is not very educated on the signs of disabilities. And this is one of those sort of compromises of like, "Hey, if you are not going to realize that maybe I might need some extra help, then this is one of those ways I can sort of signify that to people who matter."

Paul Shriever:

Artie do you have any advice for anyone who might be experiencing the same as you or is going through what perhaps you have gone through, with similar health conditions, do you have any kind of... Something you might want to say or share with them? How would you... What would you look out for? What would you do?

Artie Carden:

So the main kind of thing I've had to do for each of my conditions is that I've had to do a lot of research myself to bring to my doctors. A lot of people, online as well, are able to read and produce more of a plain language version of articles and studies and stuff like that, that are more helpful for people generally.

Paul Shriever:

To make it more understandable for people, you mean?

Artie Carden:

Yeah, rather than using a lot of academic and scientific language, using just plain English whilst also explaining maybe what some of the language is as well.

Chantal Boyle:

You mentioned at the beginning of the chat that it's actually other people's attitude towards disability which is more difficult than actually having a disability. Do you think there is very much awareness of Crohn's disease now?

Artie Carden:

I don't really see a lot of it even in fictional characters on TV or in books or films or anything like that. I watch a lot of medical shows and they don't have many people with Crohn's on them. We had a Takayasu's once. It was on House but it was very sidelined.

Chantal Boyle:

And you mentioned the vaccine, what are your thoughts about that? And do you know anything about it?

Artie Carden:

Basically it's the same sort of mechanism as the AstraZeneca vaccine that we had for COVID. So they are currently in trials. They are on their first round of patients with Crohn's, being tested at the moment and they are expecting in, hopefully, the next couple of years it will be actually available to use. But it's still kind of early enough that they don't have a lot of answers yet.

Chantal Boyle:

Well, Artie, thanks so much for giving us your time today and sharing the knowledge that you've acquired through your own research. And we will be very much looking forward to sharing that with The Sunflower Community-

Paul Shriever:

Thank you.

Chantal Boyle:

So that they can find out more about Crohn's disease and... I can't say it.

Artie Carden:

Takayasu's.

Chantal Boyle:

Thank you.

Artie Carden:

I'll do it. I got it.

Chantal Boyle:

Thank you.

Speaker 4:

If you would like to share your Sunflower story or conversation with us email conversations@hiddendisabilitiesstore.com. Find out more about us or listen to this recording again by checking out our insights page at hiddendisabilitiestore.com. You can also find us on Facebook, Instagram, Twitter, YouTube and LinkedIn. Please help, have patience and show kindness to others and join us again soon. Making the invisible, visible with the Hidden Disabilities Sunflower.

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