9 years ago…

So this just popped up on my Facebook memories…

It was 9 years ago today I went down to theatre and had my first J-pouch surgery at St Marks. I was so hopeful that the operation would solve all the problems I had been having with my stoma and give me back some quality of life. Little did I know that it wouldn’t be the end of my journey but rather just the start of another awful chapter. 

Knowing what I know now would I still have had the surgery? Honestly, I don’t know. The last 9 years have at times been pretty horrendous. The surgery left me incontinent, in pain, with bowels that don’t work and needing artificial nutrition through a Hickman line. I’ve had multiple bouts of sepsis and more hospital admissions than I could possibly count. But there’s no way any of that could have been predicted by the doctors and surgeons all those years ago. And I was having a pretty tough time trying to get by with a stoma that didn’t want to work which was why I was willing to give the surgery a go. It’s just Sod’s law that whenever there’s been a 1% chance of a complication happening then I’ve been that 1%. 

Having the J-pouch surgery meant that I should have been ‘joined back up’ and been able to get on with my life. But that isn’t how things have played out. I was just 25 when diagnosed with bowel disease and only 31 when I had this surgery; a young mum of 2 with my whole life ahead of me. Sometimes I try to imagine how things could have been if the surgery had been successful, or if my insides weren’t intent on trying to kill me. But I can’t. I see the lives my friends and family get to live and see their photos, their videos, their updates on Facebook or Instagram and cannot even begin to imagine what it must be like to be well. To be fit and healthy seems like such a distant memory and a dream that I know now will never be a reality. What could I have done or achieved without this illness blighting my life? Where might I have travelled to? What could I have experienced? These are questions that send me down a rabbit hole of despair at 3am when I cannot sleep. 

Instead my life is measured by the number of days or weeks I manage to stay out of hospital. Or the length of the stays when I’m admitted. It’s impossible to plan anything because I never know if I will be well enough to do it or if I will be having a bad day, unable to get out of bed. I feel like I’ve blinked and suddenly my children have grown up and I’ve missed out on so much because of my illness. I hope they know that I’ve always tried my best to be there for the big moments and that it’s them that give me the strength to keep going, even on the darkest of days. 

So please, value your health. Do the things that scare you. Travel. Say yes to everything. Spend time with your friends and family. Make memories. Be silly. Laugh. Because you never know when life is going to throw you a curve ball and make things a million times harder for you.