Voices of IBD (1) - Alice's Story.

Welcome to PART 1 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 is a brand new series and I have lots of people scheduled every single Monday! So be sure to subscribe or follow the blog to keep up to date on new posts!

This week we talk to Alice, about her battle with Ulcerative Colitis.



What is your name and age?

Alice Swain. 21. 

What is your occupation?

Unfortunately, I’m currently off sick trying to battle being in a flare with this illness. But I work at Tesco! 

What form of IBD have you got?

I’ve been told Ulcerative Colitis is my “working diagnosis” but that some of my symptoms point towards Crohn’s so apparently only time will tell.

How old were you when you were diagnosed?

20

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

Severe cramps and nausea, dizziness, urgent bowel movements whenever I ate, big weight loss in a short space of time, it got to the point where I couldn’t even drink water without nearly bringing it back up and I was getting up around 6 times a night on a good night to go to the toilet and still getting up for work at 5am, 5 days a week. Not fun!

How did you feel when you got diagnosed?

I felt relieved as I finally knew what was wrong with me and that I probably wasn’t going to die, haha! But also pretty devastated to learn it’s a life-long illness and has no cure.

What support did you get during and after your diagnosis?

I had brilliant support from the people closest to me, my mum and boyfriend were incredible and I couldn’t have asked for more from them. I found quite a few of my “friends” disappeared though but it’s just made me realise who the very few people are I can rely on!

Do you take medication , if so, what?

I’m still in my first flare and trying to settle it. I’ve tried two different types of Mesalazine which didn’t work but I’m currently on Prednisolone alongside trialing Azathioprine; Which sadly I don’t think is working for me. So I think Vedolizumab infusions are my next step but who knows!

What are your experiences with hospitals? Have you had many stays in hospital, or colonoscopies? Do you have an IBD nurse?

In all honesty not the best, I’ve been told and promised quite a few things from my team that haven’t happened and just feel like they’ve failed me a bit and that things aren’t moving as rapidly as they should be with how awful I’ve been feeling.

I’ve had a colonoscopy and a sigmoidoscopy. I should’ve been admitted a few times really but I’ve managed to either avoid it as I absolutely hate hospitals or they’ve messed up my admission so I’ve ended up leaving due to being left waiting around for hours when I really just needed to be in bed. 

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

So far, I’ve found that red meat and alcohol are two big no-no’s, I’m sure I’m yet to find more! My body seems to react differently on different days at the moment, probably due to the steroids I’m on.

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

Yeah I’ve struggled quite badly with anxiety for years and depression at some periods in my life but I tend to manage things better now.

Do you get support and medication for your mental health?

Not when I started struggling as I was a young teen but being diagnosed with IBD and having all this horrible stuff happen to my body hasn’t helped my management of it at all in all honesty as IBD is not something I have any control over really and that’s a huge trigger for me.

Do you feel like you get the right support?

Not right now but I’m scheduled in for some sessions with a psychologist from mid-September!

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

I haven’t figured out one yet as I’m still in my first one but I have learned that I need to let myself relax which is something I have never, ever been good at as I’ve always been super ambitious and hard on myself. 

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

I’m a big fan of long baths and pamper sessions! And getting into bed with a good book.

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

Everything has changed for me. I definitely know the walls of my house a lot better than I did 8 months ago, haha! There are a lot of foods and meals that I just know will make me really ill, drinks that will bloat me to the point of looking 5 months pregnant. Some days I feel so ill that I can barely eat a thing or move from my bed so in all honesty I try not to make plans outside of my house for the time being. I tend to generally eat almost the same things every day which is pretty much just porridge, fruit, yogurt, chicken and cod. 

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

Note down everything that’s happening, get to your GP and push to get referred as fast as possible if you think it’s more than what they’re saying. So many people get so unbelievably ill in their first flare, I got diagnosed relatively fast and I still struggled badly. Don’t let anyone downplay what you’re going through, you know your body.

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

It’s not the most uncommon condition but it’s uncommon enough to make you feel pretty damn lonely. Please be patient and kind, it doesn’t only affect the body but the mind too – in a lot of ways. A regular text, call or visit also goes a long way, you don’t have to know what to say or “understand” what we’re going through, just showing care and compassion is enough to keep us going. Also condescending comments are never welcome, we know our limits and we don’t need someone else trying to set them for us or pushing us into things we just can’t do. 

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

Probably thinking I’d much rather be going through this than anyone I love having to deal with it. And I always try and stay positive by thinking about all the things I want to do in my future and my ambitious nature kicks in and won’t let me give up fighting until I get what I want.

What is your favourite quote?

I like the quote 

“This too, shall pass” 

as it reminds me that nothing is permanent, not necessarily a good or bad thing but it’s a certainty.

And a line from a song from one of my favourite bands 

“It’s just a spark, but it’s enough to keep me going” 

– Last hope, Paramore.


Thank you Alice 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 Alice over on her blog

www.blacktulipbeauty.co.uk

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