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Health & Wellbeing / Ali Horsfall

What It’s Like To Live With An Ostomy Bag

You really can’t beat sharing stories to make you feel like you’re not alone in a situation – we can all identify with a bit of true-talk after all. Not only that, being open and honest about real things that happen to real women is the fastest way to smash taboos and get us all talking about tricky topics. There’s no such thing as an over-share. Here, Eve, 30, tells us how she manages life and love with an ostomy bag…

How did you get diagnosed with Crohn’s disease?

“I was diagnosed with Crohn’s disease at 19. Crohn’s is an inflammatory disease of the digestive tract and I’d suffered with diarrhoea, crippling stomach pain and weight loss on and off throughout my teens before I got the official diagnosis. I was put on medication to try and control the symptoms, but my condition deteriorated over the following few years. By the time I’d left university and had started working in an accountancy firm, I was constantly having time off from my job and was in and out of hospital. Some days I couldn’t be far from the toilet because I’d be pooing at least every hour. When I needed to go, they’d be no waiting around – there was no control. I also found it difficult to eat, I was in constant pain and totally exhausted. I can honestly say those few years were the most miserable of my life.

“At 22, after a particularly horrendous flare-up, a hospital stay revealed that part of my intestine was severely damaged and I’d need surgery in order to live a pain free, normal life. I was devastated at first, but had known since my diagnosis that it was a possibility. Over the years I’d made friends with other Crohn’s suffers through online support forums – some had undergone surgery and others, like me, were managing pain on a daily basis. I became close friends with a couple of girls that were around the same age as me, and we’d meet up every month or so. My boyfriend, friends and family were a massive support, but it was nice to talk about everything with other women that also had Crohn’s – they really understood what I was going through.

“By the time I was due to have my ileostomy, I felt prepared for it. I researched everything and just tried to focus on how much better I’d feel after the operation and recovery. I was so ill by that point it was a relief to have a bit of hope. Surgery involved removing part of my colon and diverting my small intestine through an opening in my stomach ­– called a stoma. I stayed in hospital for a couple of weeks recovering and had a lovely specialist nurse that helped me adjust to the massive life change. My boyfriend was also my rock. We’re no longer together, for reasons nothing to do with my Crohn’s, but we remain really good friends – we went through so much together and I’ll always remember that.

What is it like to live with an ostomy bag?

“The first thing that I had to get to grips with after the operation was of course my ostomy bag. Faeces waste would now pass from me directly through the hole in my tummy into the pouch that was attached to my body with an adhesive seal. I’m not going to lie, those early months were a challenge. The stoma was raw and easily irritated and each time my bag leaked (which it did at first) the smell was hideous and would make me cry with embarrassment. There was also a lot of gas from my stoma, I basically fart from my stomach, which was beyond mortifying at first. But like anything new, I slowly gained the skills to look after myself and manage things the best I could. When you’re dealing with something every day, you just have to get on with it.

“Before long, I’d nailed changing my pouch and cleaning my stoma and could start looking forward to living a normal life. I trawled YouTube and I think I read every single story on the internet that involved young women and ostomy bags. I learnt a lot and I learnt fast.

“I’ve now lived with a bag for eight years and although I’ve had a few small complications, I can honestly say that it’s changed my life and I’m symptom free. I swim…I work out…I do everything! You wouldn’t even know I’m wearing one as they’re slim enough to lie flat under clothes and I know what outfits work with it and what gives me a dodgy silhouette. I buy coloured and patterned covers to accessorise it because the bags are a bit ugly and clinical looking on their own so that makes me feel better. It’s the little things you can do to make your experience as positive as possible.

Can you still have sex with an ostomy bag?

“One of the most common questions I get asked is if whether you can still have sex with an ostomy bag. The answer is yes! Of course! I treat myself to gorgeous underwear so I have a lot of sexy camisoles and slips that would conceal the bag, but if I’m close to someone, I’m actually ok about them seeing the pouch when I’m naked. It’s all about getting to know each other properly and I want someone to see the real me if they’re going to be with me. I’m single at the moment but after I broke up with my boyfriend I’ve had a couple of lovely relationships and I go on dates a lot. I’m upfront about it when I meet someone and have found that it’s actually a good way to separate the wheat from the chaff. If a guy is going to be weird about it, he’s not the man for me. I’m still able to conceive and have babies so I’m looking for the right guy now to settle down and share a life with. It’s all good.”

Do you have an experience you’d like to share? Get in touch to tell us your story.

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