I first underwent surgery for a stoma back in January 2015. I’d been suffering for months beforehand. I was 19 when I started having horrendous stomach cramps and rectal bleeding; I lost a lot of weight. At the time, doctors seemed to be quick to shrug me off, telling me it was just hormonal and making me feel like a hypochondriac.
Yet that all changed months later when I was rushed down to emergency theatre. My large bowel had nearly perforated, and it turned out all that time I had been living with ulcerative colitis. The funny thing is, I never had the chance to come to terms with this diagnosis, because by the time I found out, I already had a stoma.
I remember all too vividly the time that I awoke from the surgery and—groggy from the pain relief that wasn’t quite hitting the pain—first looked down and saw my stoma bag. I couldn’t cope. I cried. I didn’t understand what had happened to me. All I could think was, ‘Why me?’.
Coming to terms
I’d really been thrown in the deep end, because I didn’t even know what a stoma was. I’d never heard the word before, which made it all seem even more alien to me. But over time, with support from my family and my boyfriend, I came to terms with it.
‘doctors seemed to be quick to shrug me off’
I won’t lie—it wasn’t easy. In fact, it took me six weeks to even change the stoma bag myself. I relied on my mum, who became somewhat of a carer for me during my recovery. But the more I watched how comfortable my mum had become with my stoma, the more it urged me to acknowledge and accept it myself.
And so, one day, as mum was getting ready to do the daily bag change, I took a deep breath and told her I’d do it myself. Obviously, the first time was daunting. I had to look at the stoma. I had to clean it. I had to touch it. But once I did, I realised it wasn’t so bad. And as the weeks went on, changing my stoma bag became second nature.
‘Although I’d come to accept the bag, it was still hard to look after’
Coming to terms with my stoma enough to look after it was one thing, but still I felt like I was harbouring this massive secret, a secret I felt I needed to get out of my system. To really cope, I decided I’d have to talk about it openly and tell people what I was going through.
And so I did. I took to Facebook, and, in a post alongside a couple of photos of me in my underwear, I explained to my friends and followers what had happened. I received an influx of support, which was reassuring. Despite deciding to share with the world what had happened, I was still nervous about the reaction. How people would feel towards me— whether they’d be supporting or pitying. To know that so many people were on my side was amazing.
‘I felt like I was harbouring this massive secret’
This influx of support was such a boost of confidence that, within just a few days, I had set up my own blog. The blog, More Than Your Bag, was my way of sharing my thoughts about life as a young woman living with a stoma with other people in my position. I wrote about everything other young women would want to know—fashion, sex, dating, food—you name it; I wrote it.
To my delight, the blog was a success, and I soon saw that I had thousands of readers! The more people who read it, the more comfortable I felt about my body, and the more encouraged I felt to share photos of it. This too gave me extra confidence.
Ups and downs
Again, I won’t lie—although I’d come to accept the bag, it was still hard to look after. I struggled with leaks a lot. I have really sensitive skin, which would often react to the bag and cause a leak. This meant my skin was often red raw, and only a couple of products could combat it. However, this was pretty much one of the only things I struggled with.
‘To know that so many people were on my side was amazing’
I’d been with my boyfriend for two years the day I woke up with my stoma. He’s always accepted me for who I am—and found me attractive however I looked. But I worried the stoma may be different. For instance, this was something foreign to my body, something even I didn’t understand. I was scared he’d leave, that he wouldn’t accept it, that he wouldn’t accept me. However, he was incredible. He really was my rock. He accepted my stoma bag immediately; he said it made absolutely no difference to him, and, at the end of the day, I was still me. It certainly didn’t stop us from having an active sex life, and I still felt attractive. I was especially happy to find that high-waist underwear not only helped secure my stoma bag, it also accentuated my figure.
Lease of life
Reflecting on what I had gone through, I realised that my stoma bag had given me a new lease of life. The chronic constipation I had suffered from before the operation had meant I constantly felt as though I needed to use the toilet. No matter how much fibre I ate, or how many laxatives I took, nothing would change, and I often left in pain.
‘ it turned out to one of the things I would deeply miss’
I found that my stoma bag meant I could go out and get through a day without worry. I could go on nights out, hang out with friends and go to festivals without worrying about bloating or pain. It was wonderful, and later it turned out to one of the things I would deeply miss.
‘My stoma bag had given me a new lease of life’
Stuck in reverse
You see, at the end of 2015, I had a reversal. My small intestine was stitched up to my rectum, and I no longer had to use a bag. I thought this would be the end of a journey and that my life would continue on much like it did with the stoma.
Things did not go the way I thought. The two years ago since my reversal have been quite difficult. I struggle to get through a day without having to use the toilet multiple times, and this often affects my social life and my career.
‘it also accentuated my figure’
Luckily, there is a team at a specialist bowel hospital who are investigating how they can put my life back on track. I’m continuing to look to the future in the hope that one day my life won’t controlled by the toilet, much like it wasn’t when I had a stoma.
Looking forward, looking back
People ask whether I miss my bag at all, and I struggle with this question. There is much that I don’t miss. The leaks certainly affected my mental health; the constant bag changes were exhausting, and I was always conscious of leaking through to my clothes.
Yet I do miss my bag. Having a stoma bag took away all of the pain I once knew. It allowed me to live life to the full, and I’m forever grateful for having been given that experience.
Hattie Gladwell is a journalist and former ostomy blogger who writes about lifestyle and mental health
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