This blog post has been in the pipeline for a few weeks now. Well, since my gastro consultant told me for the first time in my entire life that I'm in 'clinical remission' from my Crohn's Disease. Big announcement. Big two words - two words I wasn't expecting to hear... at all.
So before I continue, what does being 'remission' actually mean? Achieving 'remission' is a period of no symptoms from a chronic illness, as well as a reduction in inflammation. That's what the dictionary says, but I've spent a lot of time thinking about what it means to be in remission and how my body feels... and I think it's important I share this. Let's rewind quickly first though; why was being told I'm in 'clinical remission' such a big deal, yet such a surprise at the same time? I was diagnosed with Crohn's Disease at the age of four - which now at the age of 25, is a staggering 21 years ago.
I recently candidly told my story for the first time for World IBD Day, which you can read here. So 21 years of fighting, dealing with medication, being cut open time and time again and in spring 2016, when I found myself in the middle of another severe flare up, all I could think was geez, not this again. I was in crippling pain, passing blood, spending half my time in the bathroom and couldn't function I was so exhausted. I was told outright I needed to go on high dose steroids to get things under control and I just couldn't do it. The steroids had severe and angry side effects on my body and I wasn't prepared to go through that again. I made the decision to go on a four-week liquid diet; which turned out to be one of the biggest turning points in my entire Crohn's journey.
So fast forward a year, and I'm sitting opposite my consultant who has seen me through thick and thin since I was 17. He's a straight talking man, but a man I know has a lot of time for me (it's a personal challenge every single appointment to make him crack a smile! I succeed every time, of course). We run through the usual things and out of nowhere, he says 'well, it looks like to me you're in clinical remission'. There was a long pause, until I said, 'well, nobody has ever said that to me before!' Cue the smile from Doc and he said I'm by far the healthiest he's ever seen me. He let me go after agreeing to reduce my adlimumab injections to every fortnight and told me to enjoy the summer.
I walked out the hospital in a complete state of disbelief. CLINICAL REMISSION? How did that happen? How did I not even see that coming? I still suffer stomach pain, bloating and fatigue which are key Crohn's symptoms. Whilst I'm not passing blood, I still have to manage my lifestyle to contain my symptoms. I evaluated the past year since the liquid diet and it finally dawned on me. This remission isn't a result of Adlimumab, a drug I have taken for over 7 years now. This remission was a result of me changing my diet and lifestyle. And how have I gone 21 years without anyone telling me to evaluate my diet and lifestyle sooner?!? I felt weirdly elated yet frustrated that I could have done something a lot sooner if I had known what impact a year of change would make.
I continue to feel extremely lucky that I've reached this point in my life, but I still won't be lured into feeling secure. I have had a few people say to me now 'oh you're in remission? Well brilliant, you're alright forever now then!' Well no, that's not quite how it works. As we all know, IBD is a chronic condition and can rear its ugly head at any time. A fact that I've been conditioned to never forget (although I wish I could!) Additionally, being in 'remission' doesn't mean I no longer feel pain, bloating and extreme fatigue. I still have to very carefully manage my life and diet. Eating one thing that disagrees with me, being too exhausted or stressed can quickly send me in a little downward spiral. Self-management and self-care doesn't stop at the phrase 'clinical remission'... the journey never ends!
Having said that, the biggest lesson I have learnt is that the medical professionals don't always know everything. Don't get me wrong, I wouldn't be where I am today without the incredible support and guidance from my gastro team, but it was my decision to do the liquid diet and make a lifestyle overhaul. If you're reading this and thinking you want to make a change, please know it takes trial and error and it won't be easy. What works for one person might not work for another IBD. But what an amazing piece of knowledge to hold - that you CAN make a difference to your illness.