Anna’s stoma story | “I only had 6 hours of life with my whole bowel”

This is my ostomy story

I’m Anna, I am 24 years old and I’m a Midwife working on Labour ward in Scotland.

This is my ostomy story; in fact, it is more of a life story.

The beginning

I sometimes feel like my story is a little different to others as I only had 6 hours of life with my whole bowel.

It all started in the maternity unit when I was just about 6 hours old, I was reluctant to feed, my colour was changing to grey, and my abdomen had totally distended. As it turns out my bowel had perforated. I was diagnosed with Necrotising Enterocolitis, a devastating and often fatal disease that causes the gut to become inflamed and necrotic.

I was rushed to the local children’s hospital after having X-rays taken and antibiotics but unfortunately the only answer was emergency surgery to remove the affected portion of bowel and to form a stoma to save my life. In my first year of life, I had 9 surgeries and left the hospital just before my first birthday whilst still requiring TPN and receiving feeds through my gastrostomy for 5 years.

I have been in and out of hospital my whole life, it became my second home, in-fact it seems to have inspired me enough to work in one full time! I had a further surgery to create a Santulli stoma when I was the age of eight to allow my bowels to open the ‘traditional’ way as well as via my stoma, this was very successful and was my first step to becoming ‘normal’.

Growing up

Growing up with a stoma was pretty tough, not only did I feel very different to my peers at school, but I also didn’t know of many people with a stoma, particularly my age. My family adapted to having a child with a stoma pretty well, in fact we invented ways to manage problems such as ballooning and bag leaks/ sore skin that I still use to this day! Things were not quite the same back then, I don’t remember having adhesive removers or barrier rings, it is amazing how you can manage.

I still had a pretty normal childhood, I attended dance classes, swimming lessons, girl guides and scouts. I could still be social with friends but tended to steer clear of sleepover.

Reversal

Although my stoma was deemed to be permanent, at the age of 13 I pleaded to see what life would be like without it and try a reversal to be ‘normal’ again. Now looking back, I realise my ‘normal’ is my stoma and I definitely missed it during those 10 years without it.

It was really good at first, I was wearing crop tops and bikinis, I had so much body confidence.

After my reversal I struggled a lot with frequency of needing to open my bowels which on an average day would be 20-25 times, I often wonder how I ever managed this!  My tummy made so much more noise than the stoma and it was such a constant source of embarrassment, I would often have to leave class to go to the bathroom and sometimes would even have to go home as I was not coping.  As the years went by, I began to struggle more with the pain and exhaustion.

Due to missing so much education with illness I opted to take 2 extra years of school to give myself the best chances of succeeding in life and fulfilling my dreams. In 2019 I started at the University of the West of Scotland studying Midwifery. It was during these years of university and the corona virus pandemic that I realised how much I was struggling with my bowels. I was dealing with big life changes such as moving hours away from the town I had lived in my whole life and changing from school hours to shift patterns. It is hard enough to adapt to university life without being different but moving into halls was the biggest challenge for me.

My second stoma

I had great difficulty in finding a consultant who would care for me, often they would just say they couldn’t help me. After 3 years of tests, scans and pleading I finally got my stoma back in September 2022 with only 6 days’ notice! This was a pretty big week for me as in the same week I had qualified as a midwife, and I was planning to start my new job in two weeks, but plans changed for the better.

After my new stoma was created, I felt like I had my life back again. Although it took a little bit of adjusting, I very quickly relearned how my body worked and delved into the new world of stoma supplies (I was so pleased to see they have coloured bags now!). I am finally able to run again without being overcome with the pain of needing the toilet and having to stop. I spend much less time in the bathroom, and I am not sore afterwards. I am even sleeping better and able to socialise without so many worries (I am still always the first to spot a bathroom in a new place but that’s always a handy skill to have).

I have a funny relationship with my stoma, I spent years of my childhood wishing it was never there but when it was gone, I was begging to get it back. My life is only better with a stoma, it took me a very long time to realise this, and I totally understand what it is like to dislike your stoma, in reality you become dependent on a plastic bag to get you through your day. However, I am able to do so much now; I work, I am in a wonderful supportive relationship, I enjoy going out to restaurants to eat and I love playing video games. This is ‘normal’. You do have to work harder in this way of life, but it is so worth it!

Thank you for reading!

Anna (@what_happened_nec.t)