Voices of IBD (11) - Emma's Story

Welcome to PART 11 of the Inflammatory Bowel Disease series, where we talk to people from all walks of life with this condition; to give everyone a platform to share their story, and help to raise awareness.


This week we talk to Emma about her battle with Crohn's Disease. 


What is your name and age?

My name’s Emma, and I’m 19 years old!

What is your occupation?

I’m a student – currently in my first year of university studying Biomedical Science. I love it! Hopefully I’ll be able to work in the field when I graduate, but right now I’m not letting myself think that far head.

What form of IBD have you got?

I’ve got Crohn’s disease, mostly confined to the small intestine.

How old were you when you were diagnosed?

I’d just turned 9 when I was diagnosed - I’ve had Crohn’s for a whopping 10 years now! I can’t believe it. It was a real struggle to come to terms with it when I was so young, but I think it helped, too – kids are stronger than we think.

About the disease…
What were the main symptoms that led to your diagnosis?

It started with diarrhoea, out of nowhere, that I had absolutely no warning of or control over – utterly mortifying for a 9-year-old! Then the weight loss started, and since I’ve always been petite, it became worrying really quickly. Those two, combined, got me referred for my first colonoscopy.

How did you feel when you got diagnosed?

Of course, I was upset at first – try telling a child that they’ve got a horribly embarrassing disease, and will have it for the rest of their life! But I was secretly relieved as well, to finally know that my condition had a name, it was known to the doctors, there were treatments for it and I could take them and hopefully get my life back. From that moment, it seemed that there was only one way to go: up.

What support did you get during and after your diagnosis?

Next to none, honestly. Being in paediatrics, most of the conversation from the doctors was directed at my parents, who confessed to me a while ago that they weren’t even told much more than I was. It was pretty much a case of ‘here’s your diagnosis, now go away and get on with it’. So we turned to Crohn’s and Colitis UK to start gathering information.

Do you take medication, if so, what?

I started out on Pentasa, which worked well for years, even keeping me well after surgery to remove a stricture that had formed spontaneously. But in 2012 it was clear that it was no longer enough as I started to experience constant abdominal pain, fatigue and weight loss again – and so azathioprine was added to the mix. It helped somewhat, but in 2016 things began to slide again – and blood tests revealed that I wasn’t metabolising the drug efficiently – so in September I started on Humira. I’m hoping that it’ll be my magic bullet, but only time will tell…

What are your experiences with hospitals?

Largely mixed. My diagnosis happened at a big children’s hospital which is renowned for its care, but my parents and I all felt brushed-off by the doctors and like we were to be hustled in and out as quickly as possible. For a few years my care was under the London hospital where my resection was carried out, but the gastroenterologist I was seeing was highly brusque and continued to act like I wasn’t even in the room during my appointments, talking only to my parents. This irritated me more and more as I hit my teenage years and eventually I decided to have my care transferred to my local hospital, where I could get the bus, instead of having to ask my dad to take a day off work, suffer London traffic and sacrifice an exorbitant amount of money for parking too. That was probably the best decision I ever made: at the same time, I made an abrupt transition into adult care (since I was 15 at the time) and suddenly medical professionals were talking to me. It was eye-opening. I felt a part of the process, I felt listened to, I felt looked-after for the first time.

Have you had many stays in hospital, or colonoscopies?

Let’s see… chronologically: one 3-day (or so) hospital stay, one colonoscopy + gastroscopy, two barium meals (worst investigation EVER), a few x-rays here and there, another colonoscopy, another stay in hospital, an MRI scan, another colonoscopy, and another MRI. Oh, and blood tests roughly every 3 months, since the beginning!

Do you have an IBD nurse?

I don’t. I’ve been under gastroenterologists at three hospitals so far and I haven’t ever had an IBD nurse. I think I’m just unlucky.

What seems to affect your IBD the most? What triggers it?

Stress plays a massive part, but I’m naturally highly-strung, so the struggle feels inevitable. Also the food that I eat, although I don’t have too many triggers: my biggest ones are fat and tomatoes (no pizza for me, then!). I also don’t enjoy eating foods high in fibre, since they sometimes cause me obstructions (and usually pain).

Do you currently, or have in the past, struggle with mental health? If so, what?

I have since the beginning, and, if I’m being honest, still am. I’m not proud of it, but I’ve never sought help for it. I just don’t know where to begin: the anxiety, depression, all the things that I want help with are tangled-up in my disease, and I don’t know how much a medical professional would understand of that. And even though I’d never ever think this of anyone else, something inside of me hisses that I’m weak whenever I contemplate it. So I keep putting it off.

Was this because of your IBD, or influenced by your IBD or vice versa?

It mostly stems from the disease, I think, and how it’s been such a big part of my life for so long - I’ve grown up with it, and it’s grown with me, too, but along the way it’s set about ruining my self-worth wherever possible. I got teased for my condition in primary school, in secondary school I would get told I was lucky to be so thin like I wasn’t lucky to still be alive, and constantly trying to be as perfect as possible to compensate for the disease has really done a number on my brain. But I’m working through it, bit by bit.

How do you cope?
What is your go-to routine when you are flaring?

They creep up on me slowly, with things getting gradually worse and worse and then one day I wake up and everything is awful, and has been awful for months, and how did I not realise before? So I try and be gentle with myself. Lots of sleep, foods that are easy on the gut (I have a reputation among my friends as a voracious chicken nugget eater and this is the reason why!) and I try and keep the stress low, even though it’s difficult.

What do you do to give yourself a break or relax?

Mostly I read and play videogames. The enjoyment comes from the same place for both – being able to escape somewhere else, and be someone else, for a while. I’ve probably spent far more on books and videogames than anything else in my life so far! I also knit (poorly), which is much more meditative than I first thought it would be.

What lifestyle/diet/changes have you made to cope with your IBD?

Having been diagnosed so young, I never really felt like I had to make any drastic changes to my life, more that I was just working out what worked and didn’t, like my condition and I were growing together. But mostly keeping fat, fibre and tomatoes out of my diet as much as possible, and keeping physical exertion to a minimum, have helped.

What advice would you give to someone who may think they are experiencing early signs?

Please get it checked out. You’re not being silly for thinking there’s cause for concern. If it’s nothing, then that’s great!  But if it is something, you can start to treat it as soon as it’s confirmed. Don’t just sit there and worry.

What advice would you give to the friends and family of those with IBD?

Don’t tiptoe around it. Really. If you do, then we’ll feel like we can’t be 100% honest with you about our disease, for fear of embarrassing you or scaring you off. This really sucks –IBD is a massive burden on our lives, and sharing the burden (even just having someone to listen to us rant sometimes!) can really lessen it. But we don’t want to do that if you’re not willing – so please, if you have an IBDer in your life, and you want to support them, tell them that you don’t mind listening to them talk about their poop. They will appreciate it.   

If there is one thing that keeps you motivated and focused through it all, what would that be?

The fact that pain is temporary. Bad times don’t – they can’t – last forever. Things will get better if I just stick around long enough to see it out.

What is your favourite quote?

“When you’re going through hell, keep going.” – Winston Churchill

and

“Tough times don’t last. Tough people do.” 


Thank you Emma, for sharing your story here on BecxBlogs. If you are affected by Crohn's or Colitis; please go to the Crohn's & Colitis UK website for further support and information.

You can find Emma over on:
Twitter @QuiteGutsy
Instagram @QuiteGutsy
and her blog - www.
quitegutsy.wordpress.com