Voices of IBD (10) - Izzy's Story

Welcome to PART 10 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 Izzy about her battle with Ulcerative Colitis.

What is your name and age?

I’m Izzy and I’m 19 years old.

What is your occupation?

I’m a Digital Communications Apprentice- I’m well on my way to becoming a fully-qualified professional Tweeter.

What form of IBD have you got?

I have Ulcerative Colitis.

How old were you when you were diagnosed?

I was 18 - I’m approaching my diagnosis anniversary, and there will be cake.

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

I’ve never had entirely normal toilet habits, but about a month after I started my new job I lost a lot of weight. I put it down to the fact that the new job nerves meant that I had no appetite whatsoever.
Next, the joint pain started. Some days it was so bad I couldn’t wash my hair, other days I couldn’t walk from my desk to the fridge. Then, I started noticing blood when I went to the toilet.
One doctor’s appointment, and a flexible sigmoidoscopy later, I was diagnosed.

How did you feel when you got diagnosed?

I was gutted, but not all that surprised. I WebMD everything, and IBD had come up more than once when I had searched my symptoms. That said, I remember feeling a bit empty when I heard things like ‘lifelong’ and ‘incurable’.

What support did you get during and after your diagnosis?

I didn’t get any real support. I was referred to websites like Crohn’s and Colitis UK, but apart from that it was all quite isolating.

Do you take medication, if so, what?

I have tried a fair few things in the last year. I’ve tried two of the 5-ASA treatments, but it turns out I’m allergic to the ingredient common to all 5.
I have been on steroids almost constantly since my diagnosis, and finished another course a couple of days ago. With the steroids, I take Omeprazole to protect my stomach.
I’m also on Azathioprine, but it’s still too soon to tell if that agrees with me…

What are your experiences with hospitals?

Completely mixed. My hospital is the only in the world to specialise entirely in intestines, so I know I’m getting good treatment, but I’m not a big fan of the woman I have my regular appointments with.

Have you had many stays in hospital, or colonoscopies?

One sigmoidoscopy and two colonoscopies. I have been admitted once, but I was there for less than 24 hours. Also, an MRI, a bone density scan, a few x-rays, more blood tests than I can count and at least a dozen blood pressure tests.

Do you have an IBD nurse?

I’ve only met her once but it was the most productive and constructive appointment I’ve ever had.

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

Stress doesn’t help. A lack of sleep, or anything like a common cold, and it’s like my colon wants to remind me that it’s also not well- I can’t have a headache without feeling exhausted, nauseous and crampy. Also the classic things, like coffee and high fibre foods.

What is your go-to routine for when you are flaring?

A nurse once told me that the most important thing is that I eat, so I pick a biscuit and live off that. If it’s so bad I can’t work, I start a new book, or pick a series on Netflix/Amazon Prime and retreat to bed. I get bored very quickly so try to work from home where I can.

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

I stopped drinking coffee, because it felt like a sensible thing to do. I also stopped being vegetarian.
I wasn’t exactly a little socialite pre-diagnosis, but I definitely say ’no’ to more now.

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

Don’t Google anything- seriously. Don’t panic. Don’t hang about.

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

Don’t offer unsolicited advice, no matter how much you think you know. Don’t make assumptions. Don’t be judge-y… Ever.

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

It could always be worse.

What is your favourite quote?

Can I pick two? *Yes* I hear you cheer…

            “Though she be but little, she is fierce” from A Midsummer Night’s Dream
            “Nevertheless, she persisted”

Thank you 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 Izzy on Twitter and Instagram as @izzyakennedy

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