It took me a few weeks to pluck up the courage to announce to friends and family, via Facebook , my Crohn’s disease diagnosis.
It was April 2014, I was 22 and was just six months into my first full time job.
For the first few weeks I would stay up late trawling the internet for more information and trying to get a handle on what my life was about to become.
I fought so hard to hold back tears when the specialist gave me my diagnosis. The tears have continued. There have been angry tears, depressed tears and frustrated tears.
After a year I have been to some dark places – ones that I never want to revisit. I have tried to be strong and I have pretended to be ok in front of friends, family and colleagues.
My diagnosis of IBD has altered the way I live my life.
It has also taught me a heck of a lot about who I am. When I brought in the new year, I vowed to do more of the things that make me happy.
For me that means getting outside and hill walking, dancing, running and catching up with friends and family over coffee and good food.
I felt like the only one with Crohn’s disease after my diagnosis. When I plucked up the courage to share my diagnosis on Facebook, it wasn’t for sympathy, but simply to spread the word and start a conversation about a disease that even I was grappling to understand.
Immediately I found I was not alone.
Without this disease I would not have had the privilege of meeting a handful of incredible, strong and inspiring people that too, have IBD – I like to call them my Crohnies.
There were friends who explained they had IBS issues – that played up when they ran, so they couldn’t imagine what IBD would be like.
Then there were those friends that informed me they too had Crohn’s disease or Ulcerative Colitis but had been too afraid to speak out about it.
I was put in touch with friends of friends who had Crohn’s and I picked their brains on everything and anything. They understood the need to sometimes let friends and loved ones down because the body said ‘no’ when the head said ‘go’.
They could laugh at having an ‘I can’t wait’ card and we agreed never to use them in public.
On World IBD Day 2015, a fellow Crohnie and I celebrated at one of our favourite Mexican restaurants. We compared stories of life before and after our diagnosis, drug journeys and where we hoped to end up.
Chats about fatigue and what it really meant to be drained of energy were our specialty.
When I was given my medication, I thought I would be fixed up in no time.
I’ve since lost track of the number of steroids and immunosupressant drugs I’ve been on, and of course the nasty side effects that come with each and every one.
But as with everything in life – when life hands you lemons, you throw them back. And really, really hard.
I may not have been able to fulfil my dream of completing a half marathon on May 31 2015 due to Crohn’s complications, but I’m ok with that. Instead, I took in beautiful views and snow-capped mountains by doing the Rakaia Gorge walk with two of my biggest supporters and lifesavers – Mum and Dad.
I started my medical journey with a concoction of Prednisone, Pentasa and Azathioprine – a hideous mix of steroids and anti-inflammatories. At the height of my dose, I held out my hand before dinner and felt defeated as I stared at 15 pills.
Constant nausea forced me off work, and there were also the days I sat in my office at work and hated myself for my lack of energy and alertness.
It was a cheesy family selfie some time later that marked the end of a rough time on my first course of steroids. I finished the course with a blissful ignorance that everything would improve. It unfortunately wasn’t to be the end of meds, and their side-effects, for this Crohnie.
You are one big experiment, and you’ve got to be ready to take the good with the bad.
Nutrition has been a tricky one for me, and I know it varies so differently between every one. For that reason, I have always been hesitant about sharing my experience. After my diagnosis I dreaded the thought of being on drugs for the rest of my life.
I asked to see a nutritionist and was put on the low Fodmap diet. I cut out the Fodmaps – short chain carbohydrates which can be poorly absorbed in the small intestine. I struggled to come up with new and exciting ways to reinvent low Fodmap-friendly salad, soup or pasta dishes. Too often I turned to eggs on gluten free toast after a long day at work.
It made me more aware of foods that compounded my IBD symptoms – too much dairy, onion, garlic and rich foods are a no for me. However, between my specialist and I we decided to ease off the strict diet because it was only adding fuel to an already stressful fire.
I know now that the thing with Crohn’s is there is no easy fix. We all have a very different story to tell.
All you can do is stay positive, fight the bad days and make the most of the good ones.
Join me on my journey at Me, Myself and Crohn’s, as I try to navigate my way through my early twenties with as much energy as I can muster – while living with Crohn’s…
The invisible disease.