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Living with active Crohns Disease

Two images side by side, one enjoying a day at Ascot Races and the second in hospital

I have been both of these people over the past 10 months – and that really is the story of me living with active Crohns.

2018

Let me take you back. It was November 2018. Ahead of me I had Christmas, a incredible 7 week trip around Australia and Singapore planned and I just found out I landed a new job which I’d be starting in April 2019. I was so pumped for the things to come, but my body was having other ideas. My Crohns symptoms had started flaring to a level I couldn’t ignore and before I knew it, I was whipped into hospital to have a joyous flexi sigmoidoscopy to have a good old look at what was going on (I don’t have a large intestine, hence the flexi rather than a colonoscopy).

I always have sedation when I have a flexi (sorry but after 23 years of Crohns and some kind of camera up my bum at least once every 18 months, I made a blanket rule for myself to always have sedation. It just makes the experience slightly more pleasant), so when I woke up I was totally disorientated. When I heard my consultant say “we’ve found some severely active Crohns”, I was kind of hoping I was dreaming. Alas, I was not, and the second thing he said to me in my drunken-post sedation state was “but the good news is, we have options before more surgery”. I wobbled out to greet Josh who was waiting for me, still slurring my words from the sedation to say out loud for the first time “I have active Crohns”. The shock was similar to someone hitting me round the head.

For context, I was diagnosed with Crohns Disease when I was four years old and I am absolutely no stranger to having active disease. When I was 12 years old I had my 90% large colon removed, lived with an ileostomy for three years and was re-joined when I was 16. After that I had many scar tissue complications which involved multiple operations, but I never had any ‘active’ Crohns (read my full IBD story here). In 2016 I had minor-moderate flare, which I got under control with the liquid diet (read all about that here) and since then with the help of Adalimumab, I had generally felt pretty well. So to be told this was no longer the case and there was a very real reason I was shedding a large amount of blood – it was quite a shock.

So it was November 2018 and I was due to fly to Australia in less than 5 weeks for the biggest adventure of my life, and I had severely active Crohns which was in no way under control. The first thing they gave me was mesalazine suppositories – which it quickly became clear did absolutely nothing. I continued on the adlimumab, but as it got closer to Christmas, I began to get increasingly anxious that I was going to take myself to the other side of the world with no proper working treatment. Not to mention, I was exhausted. Barely functioning, barely socialising and barely stringing sentences together – the Crohns fatigue was REAL. Two days before we flew to Australia at the end of 2018, I was given high dose steroids. It wasn’t what I wanted, but I also wanted to feel well and enjoy the trip Josh and I had saved so hard for.

2019

The Budesonide steroids got to work extremely quickly and our trip to Australia was AMAZING. I was still taking Adalimumab at this point, so I travelled around the country with all my meds (click here to find out how I did that) and I felt great, I loved every single minute of it.

I returned to the UK in February feeling good, refreshed and ready to kick arse in my brand new role, which was starting in April. That didn’t seem to last too long, as in March I was served with a stellar Crohns slap in the face in the form of an abscess on my bum. I unfortunately have experienced one of these before which required surgery, so I know all well how quickly the situation can escalate. I had three (yes three!!) rounds of antibiotics before it got to the stage when I had to go to A&E and have emergency surgery to drain it. It all happened so quickly it was such a shock – it also happened one week before I was due to start my new job. Talk about timing!

During this whole saga and the recovery period that followed, my other Crohns symptoms started to show their ugly little faces. The consultant appointment that followed was basically me crying about the abscess, crying that my symptoms had come back mixed with me telling the doctor very firmly (my mum said I was frighteningly firm!) that I needed a new treatment plan. So I came off adlimumab and started Ustekinumab – a different biologic drug. Little did I know that takes up to three months to work, so coming off the steroids just made me flare again so back onto the steroids I went. So as I sit here writing this, I feel amazing, but I’m on high dose steroids and Ustekinumab. Why does that sentence warrant a but, you might ask? It warrants a but to me because I am due to taper down my steroids very soon – and my track history follows the pattern of flaring up as soon as the steroid dose is reduced. So I am loving this feeling – but also feel well aware I have no idea how long it’ll last. What I HOPE is the Uste is working some magic in the background – and that will be what will prevent another flare up.

Now

This probably all sounds very negative – but the truth is, I honestly haven’t been unhappy during this time. Of course, I’ve had some real lows (the abscess really pushed me to breaking point), but overall I have tried to take it all in my stride and I have had unreal support. I started my job in April full time, but in June it became clear that full time shift work was not working in my favour. I went part time in July with the full support of work – and will continue that arrangement until I feel the time is right. Josh, my family and my friends have been there for me every single step of the way and I am very lucky I have multiple people I can call on if I need to. Despite my active Crohns, I still travelled around Australia, I still have been on holiday to Portugal and Spain, I’ve attended weddings, socialised, worked and I’ve hosted not one, but two A Belly Full Of events.

My life philosophy is very much take every day as it comes and I truly live by this. I don’t worry about next week/next month and even next year, because I’ve learnt my Crohns can slap me in the face when I least expect it and I find it easier to just focus on the present, rather than worrying about what might happen in the future. Living with a chronic illness is a constant rollercoaster and focusing on the negatives never helps anyone does it? BUT what I do think is helpful is being honest, real and open. So I hope I have done this through this blog (and my events) – because I know how crippling isolating this disease can be.

If you’ve read to this point – THANK YOU! And I always love to hear what you think. This blog and my whole platform is about real and honest conversations. If I’ve inspired a thought or there is something else you’d like me to write about, please let me know!

Find me on Instagram, Twitter, Facebook or email me on abellyfullof@gmail.com.

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My body is amazing and my scar shows you why

After my Crohn’s journey blog post for World IBD day was picked up by Huff Post, I was over the moon when they asked me to write another piece for their campaign ‘Everybody’. The campaign seeks to redefine and empower those living with disabilities and invisible illnesses, whilst raising awareness of the modern lifestyle with such conditions. I took this opportunity to write a piece about positive body image when your body has been through the mill – and I’d love to share it with you below.
Let’s take a minute to talk about positive body image. Do you feel positive about your body? Do you love everything about yourself? Do you embrace everything you have and your flaws? This question is becoming increasingly hard to answer. Now imagine you have something on your body which is a little unusual. A scar, stretch marks, a burn… or in some cases, a little part of your intestine sticking out of your stomach to form an ileostomy bag. This little bag has saved your life. The scar has saved your life. Yet why is it so hard to get it out in public?
I have lived with an invisible illness for over twenty years – which at the age of twenty-five, is pretty much my entire life! Crohns Disease is an autoimmune disease, which can affect any part of the digestive tract. The body attacks itself, causing bleeding, ulcers, extreme stomach pain, nausea and diarrhoea (I know, mega glam!) I am just one of over 300,000 people in the UK living with Inflammatory Bowel Disease (we abbreviate to IBD). The disease can manifest itself in a million and one ways, which mean every single person’s journey is different. No two IBD stories will be the same – but the feelings at the core often are. My journey started when I was four years old and to date I have been under the knife seven times. Which means of course, my body has taken a bit of a bruising – internally and externally. Simultaneously, my confidence has taken multiple blows too.

The journey I have come on to accept who I am and what I look like has been long, arduous – and painful. And I’m not talking physical pain here; I’m talking about gut wrenching emotional pain.scar 2016 At the age of twelve my large intestine was so ulcerated and swollen, the only answer was to remove the whole thing. To be in a position where your body is rejecting an organ is a funny concept to get your head around, but I was so sick, I just wanted it out. To remove this, they had to make a 30cm incision, from just below my chest to below my pelvis. They then had to form an ileostomy, which I lived with for three years. This ileostomy transformed my quality of life and medically, I was the healthiest I had ever been. My confidence however, was on the floor.
My family has always instilled a great sense of perseverance in me, and so even though my teenage years were a monumental struggle, I still did everything my friends did. I went on school trips, sleepovers, did P.E classes and even had boyfriends. But I was constantly anxious, private and not myself. It was like my ileostomy and my scar had wrapped me in a Perspex box and I whilst I was physically there, I couldn’t engage in the way I wanted to. Most of all, I kept everything a secret. I didn’t talk about my Crohns, I certainly didn’t talk about my bag and I DEFINITELY didn’t talk about my gut issues. This was ten years ago now and I have since had my ileostomy reversed, but the memory of how I felt remains strong. I often open up my social media accounts and feel proud about how much awareness has been raised in the past few years and how many people are open about their IBD experiences. There was a time when talking about gut issues was taboo and embarrassing. Whilst it still might not be the best dinner chat, the grow of Insta-famous nutritionists and health bloggers mean there is now a forum for talking about this kind of stuff; there is a community sitting there waiting for you to unlock it and find the support you need. The fact I am even writing this article is a beautiful thing!! The growth of online support and awareness really couldn’t come at a better time; the rate of IBD diagnosis’ in young adults is at an all-time high… and rising.
Scars are beautiful because they demonstrate a battle won. The point is that there is no such thing as an ‘imperfections’. Who defines what is or isn’t perfect anyway?! If you have stretch marks because you’ve carried a baby, own it! If you have stretch marks because you’ve gone on an incredible journey to lose weight, own it! If you have spot scars from your teenage years, own it! And why should you own it?bryony bikini 3
Because ultimately, not accepting the way you are will only make you unhappy. Everybody is beautiful in his or her own way. If you’re body has overcome something amazing why should that be hidden? I’m not saying it’s easy by any stretch of the imagination, and there will surely be tears lost along the way to finding your way to body confidence. I used to walk around in a bikini with my hands covering my belly to hide my scar! But to my mind, if your body has been through the wars and has overcome it, then it should be screamed from the rooftops! MY BODY IS AMAZING AND THIS SCAR SHOWS YOU WHY!
Living with an invisible illness is a paradox, with which I still struggle. I want to look healthy and the same as all my peers, yet I also want people to understand the pain and struggles felt on a daily basis. Whilst looking completely normal, I want someone to rub my back and say ‘don’t worry Bryony, I understand you’re in pain/you feel sick/ you’re exhausted… Why don’t you take it easy today?’ On paper, it sounds absolutely bonkers (and also SO unrealistic!!) – yet this is the genuine dilemma of so many of us living with invisible illnesses. You can’t see it, so I’m fine, right!? It’s a total double-edged sword. Yet I’ve come to realise that humankind is pretty amazing at times. People understand more than you know and if they don’t, I’m no longer scared to put the record straight. Everyone has life experiences, which should be shared and learned from. Visual body victories are no different!! Share your knowledge, own your scar and tell the world what you’re all about. Your perspective on life is unique; and so very precious.
How is your body amazing? I’d love you to share your stories with me – in the comments below or on my social media channels to the right 🙂
Read the article in Huff Post here. 
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