Open Letter to my Stoma

I turned 30 yesterday.

Never in my dreams would I have imagined that I would be celebrating such a milestone with an ostomy bag on me.

It’s hard to think about the future too much when you have a chronic illness because you’re never quite sure of where and what circumstances might come your way. It certainly gets easier as you become ‘used’ to it all, but you won’t ever feel completely without your illness. My ostomy has taken away quite alot of that ‘I’m not able to plan for the future‘ feeling because I find my IBD much better to manage and handle with my ostomy, than I did without it. I have to look after this living breathing part of my insides as it protrudes out of my abdomen. I get to see it actually function and I am alerted when there is a problem. It is obvious and painful and acute. With my IBD, things would become acute if I ignored or mismanaged them for a while. It took ages for treatment plans to work and I lost alot of faith in the ‘wait and see’ approach early on. I was fed up, frustrated and annoyed that I couldn’t control my disease.

My ostomy was born when my disease was uncontrollable – so much so that my colon was destroying itself and my insides with it. Since then my IBD has dampened down somewhat; now that the main culprit of my years of agony and failed treatment plans – my troublesome colon – has been removed. It seemed that my resection surgery, just three months prior to ostomy surgery, sped things up abit faster than expected. But, sometimes, fate has a way of making the best out of a worst situation.

And whilst life is currently ticking along at a pace which I am quite comfortable with – not quite good, yet not quite out of control yet aka ‘manageable’ aka my own personal sweet spot  – there are some things that never change. And that is all the misconceptions about what its like having IBD, a chronic illness and a stoma.

So let’s dispell some myths hm?

• You don’t look sick
• You’re too young to have a chronic illness
• You’re too young to have a stoma
• I thought stomas were for old people
• Why are you always so tired? Why don’t you just sleep more then?
• How many hospital appointments do you actual have?
• Why do your treatments change so much?
• Must be nice having so much time off
• You can’t use that toilet, you’re not disabled!

Despite all these myths and misconceptions about chronic illness and stomas, I am here to prove that all that above is bullshit.

What I’ve struggled with for all of twenties is how to accept who I am now, with a chronic illness and then again with a stoma. The thing is, people don’t want you to be different. They want you to fit into a box and be something they feel comfortable explaining or living with. When things happen – when something like life altering surgery happens – they don’t want to accept your change. They don’t want to see you as different to what they perceive you to be. So they say you can’t be this or you can’t be that.

But guess what? I am all those things they don’t want me to be. I am living with an incurable illness. I am living with a stoma. I am a person who stands up and shows the truth about what life with those two issues is like. Because whilst its not all glitz and glamour, its real and its honest. My battles and scars show me just how tough and strong I’ve had to be because I’ve had no other choice.

So, to my stoma, on this – the first day of thirty – thank you for getting me here; with very few issues but will a whole load of gratitude and joy for being different.

One day you’ll just realise how good life is xox