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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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bryonyhopkins

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