Personal experience: First year at uni, first year with a stoma

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By Grace Barnes, Second Year, Law

The Croft Magazine // With Crohn's and Colitis Awareness Week from 1 - 7 December, a student shares her experience of learning to live with a stoma at university.

Since I’ve started at university, I’ve had two operations. I had emergency surgery in November of first year – near enough exactly a year ago – to form a stoma because my small intestine was blocked. I am used to my intestines causing me trouble as I’ve been living with chronic illness for about nine years. In fact, I had my large intestine removed three years ago because it was so diseased that it wasn’t working.

What’s a stoma?

My small intestine has been brought to the surface of my tummy and sewn into place. It is covered up with a bag stuck to my skin; you’ve probably seen or heard of colostomy bags. I empty the bag every few hours and change it every couple of days. I tuck it into my jeans so you wouldn’t know it’s there, but it presents some interesting challenges – especially at uni.

It was hard to learn to live with at the start because it felt alien – it’s like suddenly having a pocket permanently attached to your body. After surgery, my body was sore and aching and didn’t feel like mine. It scared me; I felt like I couldn’t go running or swimming or dancing. I want to be able to bungee jump one day and I felt like I would never be able to do that. I didn’t realise that I just couldn’t do it right at that moment because I was ill.

How does it affect uni life?

Someone who is healthy might come to university and ideally their first priority would be work and their degree, secondly socialising, making friends and sharing experiences. But having a chronic illness means you’ve always got to have your health at the top of your list. A big chunk of time and energy is spent making sure you’re not hospitalised – so you can’t do all the things you might like to.

My stoma is prone to prolapsing which means my intestine pushes its way out of my body; sometimes by about 10 centimetres. Walking up Park Street is a lot more difficult when you’re trying to push your innards back into your body at the same time. I also think I must look like a shoplifter when I’m walking round Sainsbury’s, pushing an indistinguishable object to my stomach under my jumper. And a night out? A very bold decision.

Leaks… happen. The only thing keeping my bag to my skin is the sticky-backing to the bag and it doesn’t take a lot for this to become… unstuck. This has happened at some interesting times, most notably: halfway down Queen’s Road on the way to a tutorial, whilst studying in Wills library, and at SWX. If you’ve seen a brunette girl in high-waisted jeans sprinting into a disabled loo at any of the above locations, it may have been me.

The biggest hurdles to my first year were the actual surgeries. I missed at least a couple of months of my first year of uni which wasn’t easy – for me, my new friendships, or my grades. I spent weeks in hospital, I had to call an ambulance to my halls of residence, my body was cut open and changed so that it didn’t feel like mine anymore, and for a moment I genuinely thought I might die. For a few months after my operation I thought I would never feel myself again. But I can honestly say that right now, one year later, the only things that trouble me are a fear of being mistaken for a shoplifter at the supermarket or having to do an emergency-bag-change at the library.

Everyone looks different and has different interests and it makes you realise that it’s ok to live your life in a hundred different ways

I’ve written about this as a reminder and reassurance that bodies are different and that everyone encounters problems: from broken legs to migraines, auto-immune diseases and mental health problems. Often you’d never know by looking at someone what their body is dealing with.

At university you’re surrounded by so many people. Everyone looks different and has different interests and it makes you realise that it’s ok to live your life in a hundred different ways. It’s ok if I’m the one with the stoma because everyone around me is so different from each other that it’s hard to compare anyway. I hope no one would judge me for my differences and I would advise anyone to keep an open mind; everyone needs to be given a bit of leeway at times, to be treated with kindness and allowed to live their life differently to the way you would live yours.

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Featured image: Grace's family and friends completed a 10k run for Crohn's and Colitis UK | Epigram / Grace Barnes


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