Meet Gill Castle

My stoma story by Gill Castle. Staying strong.

I was a serving Police Officer and pregnant with my first and only child at the time my stoma story begins. It was six weeks before my due date and I went into spontaneous labour. Unfortunately, my baby was so small, the midwife had to use forceps to get him out.

At what should have been the happiest time of my life, I ended up with a fourth-degree tear and a fistula from my rectum to my vagina which left my incontinent. I also had a massive abscess, which later burst leaving me with a permanently damaged sphincter.

It’s what’s known as a birth trauma and around 30,000 women experience it each year. I would be leaving hospital with a little boy and a colostomy.

Bringing my baby home

I’d decorated the nursery, feathered the nest and had been looking forward to welcoming our baby home. The reality was a far cry from my dream. Sam was premature, my husband Chris was working offshore, and all my friends and family were over 150 miles away. I was on my own, in pain and really struggling to cope.

Going back on the beat

I loved being a Police officer and serving the local community. But I was realistic, I knew there was a very high chance I would be confined to a desk and that after more than a year, I could lose my job altogether. Sadly, through the stress of everything I’d been through, I eventually took early retirement on mental health grounds.

To hell and back

Through the pain of the trauma and losing my Police career, I ended up being diagnosed with Post Traumatic Stress Disorder. My husband was still having to work away, which meant I was single-handedly raising our baby for weeks on end, while undergoing numerous corrective surgical operations. Because of the fistula, I kept getting sepsis, requiring even more treatments.

Originally the colostomy was only meant to be temporary to give the infection a chance to heal. It should have been removed after 12 weeks. As time went on, it became clear that mistakes had been made and now the sphincter was too badly damaged. My stoma would be permanent.

Looking back, I don’t know how I coped so well. It’s true what they say, Mums are made of tough stuff!

My light bulb moment

I’ve always been a positive person who likes to live life to the full. But through everything that had gone on, I just needed to get back to being me. That moment came when I heard someone refer to their stoma by saying ‘This is the life it has given me’.

It really struck home. Instead of thinking ‘what if?’ I started thinking ‘what next?’. Without my stoma I’d be incontinent. With my stoma, I just crack on with the life I want to lead.

Food for thought

At the start, knowing what and what not to eat was pretty difficult. If I ate anything too rich, my stoma would just go ‘pfft’ and I soon learned it didn’t like Champagne or curry!

Things like pulses, nuts, beans and leeks (I have a Welsh heritage) still can set it off, but it’s all about everything in moderation. I’m happy to say I can each pretty much everything that anyone else can.

From strength to strength.

I’ve always been a really active person and couldn’t wait to get stuck into my recovery. It’s the resting bit I find difficult!

I started walking but just as it was getting a bit boring, I came across an indoor cycling group. At the time I was slightly overweight which made me feel a bit self-conscious. But there were toilets nearby and everything felt right! Straightaway I was hooked. Everyone was so welcoming, and the exercise was perfect for my needs. I’d always been worried about developing a hernia after reading that up to 70% of people with a stoma get one, but through cycling I was strengthening my core muscles.

I was soon cycling and swimming regularly building my fitness. A friend introduced me to a triathlon group and, you’ve guessed it, I got hooked on that too! I was concerned about the practicalities, but after discussing it with the organisers, I signed up to do a sprint triathlon. It was amazing. The following year I did a standard triathlon and the year after, I completed a half Ironman to raise money for the Birth Trauma Association.

So far, I have been sky diving, scuba diving, climbing and, my current passion, open water swimming.

Learning to love yourself

When I first had my stoma, I felt repulsed by it. Intimacy was difficult, but the secret is learning to love yourself. My husband was supportive from day one and it helped that there’s a lot of humour in our relationship. I still hate the way the bag flaps around in bed, so if we’re having sex, I will usually wear a band around my stomach (which is actually a maternity band we had left over haha!).

Sharing my experiences

My friends suggested I should write a blog and after a bit of thought, I realised it could be therapeutic for me and helpful to anyone else with a stoma.
I called it Stoma Chameleon because that’s how I view having a stoma. It’s a big change but as people, we always adapt. I lost my job and went through a major surgery and traumatic experience, but I found a new way of living a different type of life.

I love writing about my experiences and update the blog regularly. I am doing an open water swimming bikini challenge at the moment and I posted something about not being able to have a bath for 2 years as I just hated the thought of my bag floating about. A girl messaged me to say I’d inspired her and given her the confidence to have a bath too after 5 months, which is amazing.

Next on the bucket list

In May next year, I will be doing the Three Peaks national challenge, climbing the UK’s three highest mountains in 24 hours. I can’t wait! I’ll post it to my blog and hopefully inspire other people with a stoma to live a full and active life.

In 2023 I am swimming the English Channel solo, with Kayleigh Adams on my crew as support, as team Ostomy Mermums. Visit my fundraising page

Of course, sometimes it’s the simple things that bring the greatest pleasures. When I look at my 9 years old son, I know even after everything I’ve gone through, it was worth it.

With love

Gill

If you’ve been inspired by Gill’s story and would like us to pass a message on, simply email meplus@convatec.com or if you’d like to contribute your own stoma story, just get in touch the same way.