My stoma surgery experience


“My advice to anyone due to have surgery is; find support.”

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In 2016 I was diagnosed with bladder cancer. I was shocked, everything was a blur as I was told about my options and treatments were explained.

I decided to go down the route of having treatment. The next year was filled with medication and failed attempts at feeling ‘normal’. So, in 2017, I finally decided that my bladder had to go.

After meeting with my doctor, we decided that I should have a stoma formed.

Believe me, the decision wasn’t made without hesitation. How was I going to feel about it? What if my body wouldn’t cope? What if I was repulsed by the sight of my stoma? But this was it, I knew I couldn’t live in continuous pain and my quality of life was more important than the doubts I was having.

The day of my operation arrived, 19th August 2017. I felt so anxious my body wouldn’t stop shaking, I felt sick to my stomach, and I had to hold back tears as my family walked down to the theatre with me. I was greeted by the most wonderful nurse, who I’d met previously, and her familiar face instantly started to calm my nerves.

The surgeon explained that I would be given a spinal block then general anaesthetic. The spinal block completely numbs the lower half of your body, which was a feeling like I’ve never experienced. Before I knew it, it was time for general anaesthesia and for the surgery to begin. I was given the anaesthesia and we started counting backwards as I started feeling sleepy and happy and cracking jokes like “hey, you should bottle this” which I’m sure they’ve heard a million times before.

Day 1 post-surgery was intense. I woke up feeling as though I’d been stabbed and was extremely thirsty. I was told to sip water slowly, which was extremely difficult when I was desperate to down pint after pint.

We later discovered that my potassium and magnesium levels were low, which was the reason I was so thirsty!

Day 3 post-surgery, I was transferred from ICU to a high dependency unit. This is where I was given the space and help to try and change my bag myself for the first time. As the nurse spoke through the process of changing the bag, all I could think was ‘how would I react to my stoma?’, ‘What if I can't do this?’, ‘What if the sight of my stoma makes me feel sick?’. I asked the nurse if she would be able to take over if I found it too difficult and she agreed.

I held my breath as I looked down at my poor swollen stomach. My hands were trembling as I hesitantly sprayed the adhesive remover at the top of my bag and started to remove the bag and there it was. My stoma was amazing, looking like a bright red cherry, all of a sudden, my fears turned into curiosity, and I was amazed that this tiny little thing was going to give me my life back.

I wasn’t sick, repulsed or disgusted. I took charge, I owned it and I felt EMPOWERED!

After I was discharged from hospital, the months that followed were filled with trying to get used to my new body, dealing with leaks and a rollercoaster of emotions. But the hard work paid off and I got to a place where I knew what worked for me and what didn’t. My anxiety and worries started to go, and I could finally start to enjoy my life more.

I know first-hand how difficult it is to have surgery and all the emotions that come with it. My advice to anyone due to have surgery is; find support. Look online for groups that meet in your area or join social media groups to share your fears and gain advice from others.

If I was to be asked, ‘Are you happy with your decision to have a stoma?’ my answer would be, HELL YES! Life with a stoma really has given me a new life, filled with challenges and opportunities.

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by Anita Brown

Anita Brown

About the author

Hi I’m Anita Brown. Diagnosed with terminal small cell bladder cancer in April 2016. I've had palliative chemo and radiotherapy, and a radical cystectomy and urostomy in August 2017.

I've had problems with my bladder all my life, from incontinence, to kidney and bladder stones, and now cancer. I would like to share some of my experiences - follow me on Twitter.