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"My stoma bag saved my life"

Photo credit: Bethany Jacobs
Photo credit: Bethany Jacobs

I slammed down my vodka mixer, spilling it across the bar. “I need to get out now,” I screamed, already stumbling towards the club toilet sign in my high heels. The urgency was unbearable.

A few hours before, we’d been laughing, joking, taking selfies and raising toasts to our successes as we pre-drank in our hotel room. I was on holiday in Las Vegas, a single 23-year-old with her best friends – it was meant to be the time of my life. But the excruciating cramps and the blood I lost during each of those excessive toilet trips meant it felt like anything but.

My life had just started to feel magical – bursting with opportunities. I’d landed my dream job in a law firm as a paralegal. My social life was thriving – out every weekend with friends making memories. But everything changed on that trip to America in 2013, I’d started seeing more of the grubby tiles in public bathrooms than I did anything else. I just put my symptoms down to going out, drinking too much and eating rubbish food – like you do on holiday.

When I got back from America, I made an appointment with my GP, who told me I could have Crohn's disease – an inflammatory bowel disease (IBD) that causes chronic inflammation of the gastrointestinal tract. My friend picked me up from the surgery and I burst into tears as the fear began to bubble inside me. Could I really have such a cruel disease?

After that appointment, I got more unwell. The stomach cramps were agonising, aches that would keep me up all night. I’d also lost so much blood in my stools that I became anaemic. I was still trying to be a party girl, out at bars most nights of the week – I never once thought that what was happening to me was real.

The diagnosis that changed my life

But six months later, in May 2013, my illness was confirmed – I was diagnosed with ulcerative colitis (an inflammatory bowel disease that causes inflammation and ulcers in the colon lining) and put on medication. Luckily, popping four pills a day massively reduced my nightmare symptoms of diarrhoea, rectal bleeding, and stomach pain. I thought my life was no longer in jeopardy as I began to feel like myself again, the meds were working.

Photo credit: Sarah Coleman
Photo credit: Sarah Coleman

But two years later, another wave of symptoms came back – bigger and badder than ever. The urgency and loss of control became so unpredictable, walking a few metres would cause pain or an urge to use the loo. On some days, I was using the bathroom more than 25 times. My new reality was that I was awake every hour with stomach pains, and when the urgency to go hit, I had to go there and then. My independence, my life – everything I once had – was slipping away. The past two years felt like a lie, I was never ‘cured’ of my symptoms, my GP told me that I was in what they call a remission stage.

Even my commute to work became a danger zone. It happened on the tube one evening, which felt like the longest and most mortifying journey of my life. I was with a friend and I couldn't hold it. As soon as we found some toilets, I ripped my tights off and threw them away. I felt so ashamed as tears ran down my cheeks – and it wasn’t just because I'd ruined yet another new work dress.

My inability to do even the most simple tasks left me housebound and meant I had to leave the law firm I adored. Not being able to work was hard. Most people complain about work, but that's all I wanted to do. I watched my friends continue their lives, and although I tried my best to still go out it never ended well. I’d lost so much weight, even my friends would walk past me because they no longer recognised me.

Looking for answers

The time 4.05am flashed on the alarm clock, my phone glued in my hand, overflowing with tabs on my screen, lighting up my face in a room of nothing but quiet blackness. That’s how I spent my sleepless nights and housebound days: searching for things that might make me better. I was desperate for a cure, a glimpse of hope. When I wasn't going down rabbit holes online, I’d spend my time connecting with people through Facebook groups. That’s where I met one girl who suffered from Crohn’s too. I felt comfort in having her there to message because I was so scared of being alone. I was craving someone who understood the pain.

One night, as we were chatting on messenger, she said the unthinkable: “Look, it doesn't sound like you’re getting any better, maybe you need to go into hospital.”

“Absolutely not,” I snapped. I couldn't face the reality that that’s exactly where I needed to be.

It’s almost like I jinxed it, as not long after, my body began to reject the steroids I was taking and I was rushed to hospital. Initially they thought it would take five nights of intravenous steroids to get back on track but I didn’t respond. I found myself on a shared ward for three weeks attached to two drips, one in each arm. I’d stare at the clinical ceiling lights that never switched off, not even at night, thinking maybe this is my life now, this is how it ends.

Photo credit: Sarah Coleman
Photo credit: Sarah Coleman

One morning, the surgeon sat on the end of my bed, a stoma bag might be the only thing that can save me, he said. I knew what a stoma bag looked like and what it did, but I wasn’t prepared to have one. I was 25, I didn't think I'd be able to live a happy life with it. Looking back, I don't know why I was so adamantly against it. I was just terrified to accept this fate.

Eventually the time came when I had no other choice. It was a Wednesday in April 2016, I remember it like it was yesterday when the nurse said it’s the end of the road for me. The thought of death literally around the corner made my heart drop. I was just days away from my bowel perforation (a hole in the lining of my colon) rupturing and I knew I could die – unless I had surgery in the next few days. And so, it was confirmed, this was my fate. The day before surgery, questions darted in my mind. Will I be able to wear tight clothes with a bag? Eat the same foods?

I was in surgery for eight hours while I had my stoma put in place. Basically, it’s an opening on the surface of my stomach to allow the flow of faeces or urine into a waterproof pouch. Two days after, as I glanced down at it for the first time, I felt nothing but relief. It’s the best thing that ever happened to me. Since then I’ve gone back to work, I found my freedom and independence again, and I could see my friends after months of isolation. It was like having the old me back.

The one side of having an IBD nobody talks about is that it can lead to perianal fistula and sepsis, this is what happened to me and it meant I had a 10cm abscess on my bum cheek that had become infected. I went on to have the second part of my colon removed in March 2020, which makes my stoma irreversible. It’s here to stay but I'm more than okay with that. My stoma has given me so many opportunities, it’s completely changed my outlook on life.

Photo credit: Bethany Jacobs / Sarah Coleman
Photo credit: Bethany Jacobs / Sarah Coleman

Back in 2016, on one of those many hospital days, my mum gave me a diary. I cracked open the spine, the smell of fresh pages felt like a new beginning. I began scribbling down all of my desires – a sort of bucket list – a trip to pig island in the Bahamas to swim in the sea once more was right at the top. It had felt like a dream, but just three weeks ago, I came back from that dream holiday, swimming with those pigs in the Bahamas. Back then it felt like I was never going to get out of bed again. I’m so proud of myself and to have made it this far. I'm the healthiest I've been in a long long time. I don’t care what anyone thinks. People will stare at my bag – especially when I am wearing a bikini – but that's down to ignorance, they can look all they like, but it's saved my life.



The Crohn's and Colitis Foundation say it’s important not to confuse IBD like Crohn's with IBS. IBS is a disorder that affects the muscle contractions of the bowel and is not characterised by intestinal inflammation, nor is it a chronic disease. Please visit Crohn's and Colitis Foundation for more information. See your GP if you're worried about your own symptoms

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