Hey! I’m LC, a translucent 28 year-old ostomate from Scotland. I’m a HR and employment law specialist and currently studying for my LLM whilst working, and juggle being a cinnamon whiskey enthusiast and chronic badass on the side… At least I think I do!
I was diagnosed with Crohn’s disease almost 20 years ago after quite a while of being unwell in early childhood. Pretty quickly, I was under the care of Yorkhill Hospital for Sick Children in Glasgow and exhausted most medications and other treatments including the Modulen diet (not ideal as a snacky 10-year-old and even worse doing it abroad during your summer holidays!). On turning 18, I transferred to my current local general hospital and have received the most incredible medical and surgical care from my GI consultant and colorectal surgeon, and as well as now having been treated with every medication currently licensed for use in Crohn’s in the UK, I have had countless procedures and surgeries including seton placements, balloon dilatations, fistulotomies, abscess drainages, a hemicolectomy and most recently, a proctectomy with permanent end colostomy.
Crohn’s is truly the gift that keeps on giving as it can crop up anywhere from your mouth to anus (although thankfully I no longer have my rear end thanks to illness completely destroying it!). I’ve experienced Crohn’s flares all through my body and despite having only half of my large and small bowel left and no rectum or anus, my disease is currently active in the little of my colon and ileum that I have left. I have also experienced extraintestinal issues including very painful erythema nodosum on my shins, scleritis (inflammation of the eye) and also have a diagnosis of peripheral arthritis, which my biologic thankfully helps manage, too.
I do a few things to manage pain that are probably weird, and when I reflect it’s actually stuff I used to do as a child without thinking about it – like a strange inadvertent coping mechanism to conceal my struggling with pain and get through until I could release my tension. When I was younger and would spend hours in the bathroom in agony, I would count the tiles on my mum’s bathroom wall, count and recount until I was square-eyed. If we had been out and I was desperate for the toilet on arriving home and was waiting on my mum unlocking the house, to try and avoid having an accident or screaming in pain I would pace the patio in the back garden, counting each square backward and forward as I stepped perfectly in the centre of each one whilst grinding my teeth. Weird, right? I didn’t realise at the time, but I think having something to concentrate on helped distract me ever so slightly and helped me cope with something I just needed to get through in the short-term – and sometimes, I find myself doing the thing with the wall tiles even now. Sometimes I sing when I’m in pain, too (I enjoy singing but am NOT a public singer so I’m screwed if my partner is home!) – it might be the muscles that you use that distracts your area of pain slightly, or it might just be a placebo effect, but sometimes I find it temporarily helps me get through a pain wave. It’s safe to say distraction tactics seem to be my own little way of getting by!
Tiredness and fatigue continue to be a biggy for me, especially when coupled with anaemia, something that a lot of IBDers experience. My condition, medications, demanding full-time job and equally demanding Master’s studies all contribute to this, and I’m also not the world’s best sleeper – but there is nothing more frustrating than switching off for the night, relaxing on the sofa, heading to bed and sleeping through and still waking up feeling totally wiped out! We just need to be kind to ourselves, listen to our bodies and learn to slow down a little sometimes. Chilling out is one of my favourite hobbies… I’m a very laid back person who likes to kick back, and why not if it helps my condition?!
I’ve always been someone who has managed to remain realistic but positive through all challenges faced, but following my last surgery in September 2019 on my very problematic main proctectomy wound, I really struggled to manage my pain for weeks and experienced many a sleepless night. I found myself reading more and more about the principles of stoicism as a way of helping understand and manage emotion, something I had always been interested in and identified with but not had lots of knowledge on. I had been aware of the phrase ‘memento mori’ for years before, but my learning taught me that it basically means ‘remember you must die’. Sounds morbid, right? Not quite. What I take from ‘memento mori’ is to remember that death is inevitable, so I should do my best to live life as fully as possible whilst I’m here. It encouraged me through a difficult recovery period to believe that more positive experiences were coming and that the pain would be temporary and all worthwhile when I eventually got back on my feet and enjoyed being able to live again, which I did.
Whenever I need a bit of inspiration, I recall the Latin phrase ‘per aspera ad astra’ – it literally translates to ‘through hardship to the stars’. It reminds me that there is always light at the end of the tunnel and to never give up because I will ALWAYS get through – and the difficulty of the journey just makes the achievement all the more worthwhile. The achievement doesn’t have to be ground-breaking, either – it could be as simple as having a rough day and remembering that you can get through and start afresh in the morning.
Find Lauren | @abagforlife