I’m Ellie, I’m 20 now and I’ve had my ileostomy for just over 1 year.
The symptoms of my Ulcerative Colitis first began when I was 17. The typical self-conscious teenage girl, bowels and poo were the last thing I wanted to share with the world so I made excuses and hid my symptoms of diarrhoea, bleeding and fatigue from my family, friends and everyone around me.
I went through sixth form and got into university desperately trying to ignore the warning signs that something serious was happening to my body. Now 19, I got through my first term at university but found that after over a year of undiagnosed symptoms I was becoming extremely ill. I would bleed up to 20 times per day, became confined to my student halls and my day revolved around sleeping, dragging myself into lectures and sleeping again. When I came home for Christmas I realised I’d lost nearly 2 stones and my mum sent me to the GP, who referred me straight to A&E.
By this point I had severe anaemia and was diagnosed with pancolitis – ulceration of the entire colon. I weighed just over 6 stone and was deficient in lots of different minerals. Throughout Christmas and New Year of 2013 I was in hospital being pumped full of steroids and immunosuppressants.
On New Year’s Day 2014 I suffered a haemorrhage and needed several blood transfusions. The drugs had failed me, and worse, they had started affecting my kidneys as well. Already severely sick, I was told it was now a bag, or death at 19.
I was initially disgusted by the idea of a bag. I imagined something huge and awkward, that would make me really ugly and would limit me in what I could do. I felt heartbroken that after being diagnosed only two weeks earlier I was now faced with such a huge operation.
I had the surgery and had to take a year out of uni to recover fully. And it was only then that I began to realise – this bag’s not bad at all.
I really wish that terrified girl that was me on the day before my surgery could see all the things I would achieve later that year. I started off small – just getting out and about with friends was an achievement at first. Then I visited my uni friends back in halls, and went to stay at one of their houses. As my strength continued to grow, I plucked up the courage and flew out on a foreign holiday to Spain with my university friends in the summer! I also went to Italy later that year.
By this time, I’d realised just how normal bag-life could be. I eat normal food, whatever I like. I wear tight fitting dresses with some support undies underneath and nobody can see my bag. I can drink alcohol and love a good night out. I’ve been hiking and camping (climbed a mountain, in fact!), been on roller coaster rides, been to a festival and I’m now back at uni and loving it, all with a Stoma. Nobody has to know about my bag unless I tell them, but if they do ask, I’m very open. I’ve never had a bad reaction from anyone.
I’ve also been in a relationship since my surgery, with a supportive guy who sees past my medical problems.
I now do a lot of work with Crohn’s and Colitis UK and wherever I can I try and spread the word to other scared people facing surgery that life can be amazing after you’ve had it done.
“I don’t regret what happened one bit. I am so WELL nowadays, and live life to the full”.
I am 20 now, and this year I will get a J pouch made and no longer have a Stoma. That said, I’m happy with my bag and most days, I even forget that it’s there anymore, it’s become so normal for me!