5 memories of my ostomy

As my stoma's got very little time left with this world (just under 10 weeks, to be precise), I thought I'd share some of my most memorable moments of bag-life that I've had over the past 2 years. I first had a stoma at 19, and I'll be 21 in a couple of weeks, so it's been a pretty large chunk of my life. A lot's happened in these years - I've left home, gone to university, been abroad to places I'd never seen before, been to my first music festival - all with bag in tow. Whilst there's certainly been some challenges, these years have been some of the best of my life, and Ulcerative Colitis has done nothing to change that.

So here's my top 5 most memorable moments: the good, the bad and the ugly!

#5: My most awkward moment with a stoma

I was waiting to get a coach down to visit a friend, and really needed the bathroom before we pulled away. There was a proper toilet block about five minutes walk away, but I didn't really have time to go that far, so had no option but to use the one-room, pay-20p-for-a-timed-slot toilet that was in the bus station.
My bag was pretty brimming by this stage, so let's just say, there was a lot to empty out. After I'd finished up, I realised that there was no 'flush' button beside the toilet, but instead a little notice that said, 'this toilet will flush automatically 20 seconds after you exit the cubicle'. It was a little odd, but I figured the loo would do its business and opened the door to leave.
Turns out another lady had been waiting right outside the door, absolutely bursting for the loo, and dashed in after me before the '20 second' period was up. The loo hadn't flushed. I looked back and in the five seconds before the door closed I caught her open-mouthed expression of disgust, shock and sheer amazement that one person could possibly produce THAT quantity of poop in one sitting!

#4: My worst moment with a stoma

My lowest moment with a stoma had to be right after operation 2 (J-pouch creation and loop stoma). Although it was a planned surgery, things went pretty badly as I suffered a massive bleed-out 6 days post-op and it had really knocked me for six. Because I'd already had an end ileostomy for nearly 17 months at this point, I figured the loop ileostomy would be easy, but I was wrong on that one too. The two stomas require extremely different care and technique.

I left hospital with all the equipment I thought I needed, only to have a leak pretty much as I was walking out of the ward. Thinking this was an unlucky moment, I changed and got into the car to go home. Getting back, I felt the stinging again - another leak! I changed it a third time, my skin feeling pretty painful by this stage, checking I was doing everything right. It seemed fine at first. Then 20 minutes later, it happened again.

It turns out that just that day, my stoma had retracted more into the skin, meaning I actually needed convex bags - but I hadn't realised that at this point, so was just using ones with regular flat flanges. Over the course of 6 hours that evening, I changed the bag a whopping NINE times. NINE. By the end of this, my skin was literally raw, and my spirits felt really broken. I remember just sitting in the bath without a bag on for half an hour, not caring anymore, just crying.

By some amazing stroke of luck, we actually had some convex bags in the house that had been given to me by a neighbour after his wife had died of colon cancer. He'd just wanted them out of the house, as the sight of them hurt too much. I remembered reading online about convex bags, and the moment I tried one, it was perfect. No more leaks. Comfort and rest at last. In an odd way and in my exhausted mindset it felt like my neighbour's wife was up there somewhere looking out for me - without using her bags, I don't know how I would have made it through the night.

#3: My weirdest moment with a stoma

I was on a night out with some old friends I hadn't seen for a while, some time in between surgeries 1 and 2. We were all dancing away, having a great time. One of the girls, who I hadn't spoken to in absolutely ages, was pretty drunk. We all went to the toilets as a group (as girls do) and as there was a huge queue, this girl and I went in a cubicle together - I only needed to pee, anyway!

I was in the middle of it and she was turning the other way, when all of a sudden she asks me, 'Can I see your bag?' I was kind of caught off hand, and I actually said no, because although I'm fine and comfortable with my stoma, I didn't exactly want to 'whip it out' on cue. She knew I'd had surgery, but we hadn't actually had a proper conversation about it, which was what made it weirder. As we were locked in this tiny cubicle together she proceeds to ask some really weird and quite personal questions - 'how does it feel not to poop?' 'like, how big is your bag?' By this stage I really wasn't in the mood for these quickfire questions and just wanted to get out of the cubicle and get on with the night.

And then came the oddest comment I think I've ever heard, which may sound quite nasty on here but it wasn't really - more just really-drunk-no-filter - 'Don't ever feel embarrassed about it, I have accidents in public sometimes as well!' I just had to laugh, really. The sober side of me felt like snapping back 'I do not have accidents in public - wearing my bag doesn't mean I'm having accidents' but as I was tipsy and she was really out of it I kind of nervously laughed it out... She didn't remember the conversation the next day anyway, and was dying of embarrassment when I reminded her.

#2: My proudest moment with a stoma

The hospital I'm with tries to do a lot in the way of counselling patients with stomas - they run monthly support groups, informative talks and even have patient 'text-pals' where (with your permission) they share your mobile number with future patients struggling to come to terms with their stomas. When I had my stoma first made, I got a 'text pal' who was a similar age to me, and she was unbelievably helpful. It was her that first inspired me to start talking to others about the surgery - if just chatting to her had been so therapeutic and reassuring, then I wanted to help others in the same way.

I've actually met some amazing friends through this service. The 'text pals' idea can be a very powerful thing. Sometimes, after a stoma operation, you need someone to tell you the little things that a doctor can't. Like what to wear, the best accessories, whether swimming is possible - all the trivial yet important stuff that might be on your mind.

So about a year and a half after my own surgery, the hospital started handing out my number to new patients who'd just had stomas. They were around the same age as me, and often we had very similar stories to tell. One time, me and another girl chatted for ages and ages and I think by the end of it I'd covered everything from clothes to swimwear to music gigs. She went ahead to have a successful surgery. When I had operation 2 and was updating Facebook regularly, I got a lovely message through from this girl saying she hoped I was well - but also she wanted me to know just how much better and more confident I'd made her feel just by having that chat. Before, she'd been really worried about having the op, but our conversation was the first thing that made her realise how normal life can still be with a bag.

The knowledge that I've helped just one person come to terms with this surgery is amazing. Through my blogging and anything else I do online, I hope I can boost others' confidence and lift their hopes up.

#1: My when-the-impossible-was-possible moment with a stoma

There's actually been a lot of these, and the best thing is, even small achievements can make you feel phenomenal. From going swimming for the first time, to wearing that straight skirt, to eating the 'banned' mushrooms - lots of things that at first seem 'impossible' with a stoma can actually be extremely do-able.

I think my most impossible/possible moment with a bag was when I spent 4 days hiking through the Brecon Beacons supervising a DofE Gold team. Out in the Brecons, there were no proper bathrooms (sometimes not even proper toilets!), and I very nearly didn't do it out of fear that I'd face some issue. How would I change my bag? Or empty it in the wild? What about getting up at night and trekking over to the toilet block in the dark? Sharing tents with other people? So many things seemed capable of going wrong, I very nearly backed out of the whole thing.

However, hiking and the outdoors has always been my passion. Before my diagnosis, I completed all three DofE awards, and even hiked up mountains in the Swiss Alps. I wasn't going to stop this stupid disease steal away one of my greatest loves.

So I took a deep breath, and... I did it. I changed my bag in a tent. Emptied it in a few bushes. Occasionally used leaves as loo paper. I made the trek across campsites in the dark to the toilet block or the 'loo spot'. Throughout the 4 days we hiked around 90km up and down mountains, carrying our equipment with us, cooking on the camp stove, and seeing some amazing scenery.

It might sound like some people's idea of hell, but I absolutely loved it, every minute of it, and wouldn't have changed a single bit. Using leaves as loo paper didn't matter when I was spending four days surrounded by scenery I adored and doing something I never thought I'd be able to do again.


These past two years have certainly been eventful, and I won't forget them in a hurry. Having a stoma has both challenged and inspired me, frustrated me and made me thankful, been one of the hardest things I've ever done but also given me back the health I'd not had for years. In an odd way, I'll kind of miss my bag. My J-pouch is a new chapter in the story, and who knows what else it'll bring.

Ostomates - love yourself, you're FABULOUS!