Like most things in life IBD isn’t easy, but unlike most things – annoying boyfriends, bad coffee, crap workloads, rude people, colds and bad breath – you can’t get rid of IBD.
Crohn’s and/or Ulcerative Colitis can’t be dumped, shrugged off, shifted with Night Nurse or left at the side of the road like an old sofa. They also can’t be killed, rather slightly dampened under a blanket of wonderful, but also debilitating, drugs and treatments.
Living with IBD is like riding a rollercoaster: you have days of highs and days of crushing lows.
Crohn’s and Colitis UK have launched a campaign called ‘every day is different’ – even now, after my surgery, I have to agree.
Every day really is different with Ulcerative Colitis. Every day is different living with a stoma. And, well, every day is different and unique simply being me.
Since my surgery the surprise bad days in my calendar haven’t come round nearly as often – they used to be too frequent, and looking back I have no idea how I even found the strength to brave the world on the many days I felt so ill it took every ounce of energy simply to lift my head, get out of bed and stumble to the toilet.
My ostomy has opened up a world for me and freed me from being attached to drips; rows of tiny red pills; staring at tiles in bathrooms in gyms, offices, boyfriend’s homes and, well, ant infested gastro wards.
I’m grateful for no longer having accidents waiting in traffic jams, racing home and in supermarket queues; being able to travel without being frightened of long car and train journeys; no longer spending sleep-deprvied nights curled up in pain on bathroom floors – oh and not spending all my holidays attached to a drip or waiting for an outpatient’s appointment.
But despite my life not being as unpredictable or frightening, every day with an ostomy can present a new, weird and often wondrous challenge.
Over two years since I first got Winnie (and a year since she was permanent) I’m still finding out things about her – such as her new found hate of cucumbers, and her inability to remain quiet or still in intimate and highly important moments.
Every day without the pain of Ulcerative Colitis is a wondrous treat, but I’ve started to realise it is a gift that I’m simply not appreciating enough.
I used to put on a brave face and smile no matter what, even when I was in agonising pain and simply wanted to die. On the good days I felt deliriously happy (even if I was frightened by a flare just around the corner) – somewhere along the line I’ve forgotten to appreciate how good feeling well is.
My blog challenges and my adventures have stalled recently.
I’ve been wrapped up in work, moving to Wales, changing my life, and falling in love that I’ve forgotten why I started all this in the first place.
It started because I needed something to aim for. Back in the first weeks after my surgery when I could hardly walk, covered in dressings, and had two bags, I needed a goal and a dream – the adventures were it.
As I approach my 28th birthday I’ve realised I’m not going to manage all 101 – it was a ridiculous goal, especially since I don’t have a lot of money or even a car.
But as it’s Crohn’s and Colitis Awareness week from December 1-7, which happens to be the same week as my birthday (hold back on the cards guys), I’m going to share my days with you and start to reboot my adventures.
Starting tomorrow I will do a short little post (and a picture) every day to give you all a little insight into my life with an ostomy, to hopefully shed some light on some of the burning questions you might have about how it affects me.
And then, once that’s all wrapped up, I’m going to have a good look at these challenges and start to figure out just what I can achieve before the big 30.
Oh, and if you haven’t signed it yet, the Hospital Food Campaign Petition is still live, please spread the word and help make some changes to the Welsh NHS.