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I used to worry what others thought of my stoma but now I share it with the world

Don’t let an ostomy hold you back!

This article appeared on Metro UK and is republished with permission.

When I was 27 and diagnosed with ulcerative colitis, it came as a bewildering and life-changing shock when my doctors told me that a bit of my small intestine would stick out of my abdomen so waste could pass into a bag attached to my belly. Looking at my stoma for the first time was like seeing some kind of alien attached to my body. I knew next to nothing about ostomies, much less how to live with one. Having been physically unable to eat food due to the ulceration in my bowel, I lost four stone in weight. So, when I came out of hospital after three weeks I looked like a skeleton and had to take six months off from work to get back to full health. I was determined from the outset to not have bad vibes about it because this surgery had ultimately saved my life.

The experience of getting an ostomy can be harrowing for many since some people who undergo surgery have a negative psychological reaction to it. Living with a stoma bag doesn’t come with just physical challenges, it also has a social stigma attached to it despite over 120,000 people who live with an ostomy in the UK, and more than 13,000 people getting this surgery every year. For some, it’s impossible to comprehend that you can live a normal, happy life with an ostomy — you absolutely can! That’s why I, alongside many other ostomates, share photos and stories on social media. Partly to end the stigma, but also to encourage and support others who are still adjusting to their new life with a stoma.

Back in 2010, when I went from a j-pouch to ileostomy, I was mostly worried about people’s perception of my body. As a result, I decided not to tell anyone about my ileostomy other than my family. It was my secret and I got on with my life as normally as I could without drawing attention to it. It’s not that I was embarrassed, but I just felt better dealing with it on my own in a private way. But these days, when I talk about it openly with friends and family, they are all very supportive and don’t look at me any differently. Also, having an ostomy doesn’t mean you can’t find a loving partner. I am engaged to my fiancé Naomi and she is very accepting of it.

It does, however, take time to adjust to stoma life and there are certain challenges, like ballooning (when gas collects in the bag), pancaking (when the sides of the bag stick together), or a dreaded bag leak, which in my opinion can be one of the hardest to deal with. My worst experience occurred in the car when my bag practically burst off my skin because it was too full, causing a significant mess and smell. Usually, I carry spare bags with me for emergencies, but I didn’t have them with me on that day. It was a long one-hour drive home.

My first summer holiday with my stoma and it's been fine!

My first summer holiday with my stoma and it's been fine!

Generally speaking, an ostomy is not too tricky to deal with and I refuse to let it hold me back. I can and regularly do play football, squash, and go swimming. Gas coming from the stoma can make unpredictable noises, but my stoma is also more or less quiet. Although it did once make a fart noise in a silent cinema. I just had to laugh and shrug it off. After all, everybody farts, and I have no physical control over this. Since I no longer have a colon, I need to take Imodium tablets every day to help thicken the output. I also have a routine where I wake up and empty the bag in the middle of the night so it doesn’t overfill. During the day, I wear a waistband to keep the bag flatter against my stomach and more disguised under my clothes. I'm learning what gives me more confidence when I’m out and about. 

Public understanding of ostomies is slowly improving, but there are still social barriers that we need to overcome in order to open positive discussion about the conditions or illnesses of why people to need this lifesaving surgery. Hopefully, by sharing my story, I can offer support to others who are worried about living with a stoma bag. Just remember, it doesn’t define who you are. Don’t let an ostomy hold you back!