A Note To My Former Self

I’m an ostomate. It’s a noun my spellchecker refuses to accept. I’m not overly surprised by that.
After all, I also have OCD and I still find that’s a misunderstood disorder, despite being covered in the press and wider media to a greater degree in recent years. Stomas are understood lesser still.
I always thought living with a stoma would be practically unbearable. In all honesty, I thought I’d feel embarrassed and disgusted just by looking at myself.
That was me then, before my operation. Today, just under two months post-surgery, I have a very different opinion. And if I’ve gone through these emotions, there are many more people who have them yet to come.
And if you’re one of them, I want you to know everything is alright.
When you first leave hospital, you’re given some stoma bags to see you through the first few weeks. They’re the same, plasticky version you’ll have used during your stay. They’re not the most attractive, and the ‘window’ takes a while to get used to. But it’s necessary, early doors at least, as the stoma nurses (and yourself) will need to keep an eye on the output — just to make sure everything is working correctly.
A few weeks after being discharged, you should be able to substitute these unattractive appendages for something a little more ‘you’.
There are lots of options out there and your stoma nurse/GP will be your port of call when it comes to adjusting your prescription.
This is when things get better.
Around 12 weeks after your operation, all being well, your stoma will have settled fully and you’ll be able to order pre-cut bags. You’ll no longer have to spend some time snipping your supply to size in front of daytime TV.
Your bowel, or what remains of it, should also have calmed down by this point. However, you may well be more sensitive and keenly aware of its daily workings — this is to be expected and it’s something you’ll get used to in time.
You’ll be at less of a risk of hernia at this stage too. But (due to the fact you’ve part of what is normally inside poking outside) this doesn’t mean you should consider it an impossibility either. Just keep it at the back of your mind, along with the alphabet and your PIN number.
What’s important is that you’ll now know what’s normal for you. And just because your normal is unusual for most, it by no definition means you can’t go on to live a life of normality.
And that’s where I am right now.
Before the operation, I was worried and more than a little pessimistic. I was concerned that I’d look at myself in the mirror and see a ‘freak’ looking back. Undergoing this surgery and receiving a permanent ileostomy was in my eyes a last resort.
I couldn’t see light at the end of the tunnel.
I was preoccupied with the thought that a ‘normal’ life was coming to an end for me when, in fact, I hadn’t had a normal existence for over five years.
During that time, social gatherings with friends had to be turned down because I wasn’t feeling great and didn’t know what my bowels would have in store.
Occasionally I’d turn invitations down despite feeling fine, purely because I wasn’t willing to take the risk.
Time with friends wasn’t the only thing I’d been missing out on. I love exploring cities and visiting new places. I’ve got lists upon lists of things to see and do; restaurants and bars to visit, treks to try, landmarks to linger at, passport pages to be stamped. All that has been on hold since mid-2013.
I’ve not even touched on how illness has affected my career. And I won’t, at least not in this post.
What I will do is let you in on an embarrassing secret: something that played on my mind for a long time pre-op was that I’d never seen an ostomate in an on-screen sex scene.
I allowed myself to believe that was what constituted a ‘normal’ body. How ludicrous that sounds now.
Today, I recognise the freedom that’s been returned to me by my ileostomy. There are still wounds left to heal but once they have I’ll be back playing tennis. The sport is a lifelong passion of mine I’ve not been able to consider playing competitively for years.
Travelling will be back on the cards. My long-suffering girlfriend has been desperate for us to get away and explore another country. Finally it feels as though I’m ready — and able — for a new adventure.
Many more activities and opportunities that for years have been difficult or impossible take part in are about to become possible once more.
I don’t feel empty — I’m about to live a full life. And I wish the same for you.
