Why I chose to have a stoma?

I’ve had my stoma for nearly 6 years and if you would’ve told me in the first 2 weeks after surgery that I would be living my life, thriving and growing, I wouldn’t have believed you!

So where did it all start?

For years, I experienced bladder infections, kidney and bladder stones, being unable to empty my bladder fully and waking up multiple times a night needing to pee. It was exhausting.

I had tried my best to manage my bladder function at home by increasing my water intake, drinking cranberry juice and making sure I didn’t drink anything after 6pm.

After home remedies failed me, I went to have my urethra stretched to encourage the bladder to empty itself fully.

I had been seeing a doctor regularly about my symptoms, but it wasn’t until 2016 that I had a diagnosis. Small cell bladder cancer. Yep, the big C.

I underwent chemotherapy and radiotherapy followed by another 6 rounds of chemo and a procedure to remove the tumour. After treatment, I was told to live the rest of my life and enjoy it as much as possible, as it was uncertain how much time I had left.

Recovery

Recovery from surgery was tough. My bladder was covered in ulcerations from the surgery and the pain was unbearable. All I could do was rock on the sofa in pain and wait to pass debris of the tumour when I peed.

Passing debris came with more complications. One night, it blocked my urethra and was also still attached to the bladder, which resulted in another surgery.

My surgeon warned me that I wouldn’t be able to have any more operations as it just wasn’t helping, and the time would come when it wouldn’t help at all.

So, what next?

I knew that this wasn’t the life I wanted. I wanted to be able to potter around my home, go out with my friends and enjoy myself. I was exhausted and in constant pain. Sometimes painkillers would dull the pain just enough that I could function, and other days it was unbearable.

I had been seeing my doctor regularly and it was mentioned that an option to explore would be a Radical Cystectomy.

After discussing it with my husband, Tim, we decided it would be worth me speaking to someone to ask if the operation could improve my quality of life.

Taking the plunge

We met with the consultant to discuss the operation. He explained what would happen during the operation, recovery time and what my life may look like after the operation.

Having my bladder removed meant that I would have to have a Urostomy formed. I had heard of a stoma before; however, I had always associated them with bowels. I wasn’t sure how I felt about it and I was worried I would find it disgusting... a weird thought, seeing as I would often pee myself if I didn’t get to the loo fast enough or if, God forbid, I coughed!

After some contemplation, I decided to go ahead with the surgery.

I was given an appointment with a Stoma Nurse who showed me the stoma bags and explained how to look after my stoma properly.

Surgery and Recovery

Surgery Day came around and of course, I was nervous... nope, scrap that, I was f****** petrified. Tim walked down to theatre with me, I kissed him and told him there was a video on my phone for him, just in case I didn’t make it.

Surgery was successful and I woke up in ICU. Well, I was not prepared for how utterly awful I would feel afterwards. Every move I made felt like I’d been stabbed in the chest. I hurt in ways that I had never experienced before.

Day 3 of recovery and I was transferred out of ICU and into a small room where they could monitor me closely before moving me onto a ward. It was here that I did my first ever bag change!

I was so worried about what my stoma would look like. Would it be big? Was I about to realise that I had made a huge irreversible mistake?!

With my nurse stood next to me, ready to help, I took a deep breath. I sprayed the remover around the bag and hesitantly pulled the bag away from my skin. There she was. My small, perfectly formed little stoma! Looking like a little cherry with stents sticking out.

It wasn’t awful, or hideous and I wasn’t grossed out. All I could do was take a sigh of relief.

A new outlook

After a few weeks of having my stoma. I started to see the changes in my life. I had more freedom, I started to worry less and my days of curling up on the sofa in pain where long gone.

8 months passed and I felt like me again. I was used to doing bag changes and the occasional leak didn’t really bother me. It was a huge difference from the constant pain, discomfort and endless battles with my bladder that I had been experiencing for years.

Although my surgery had massive benefits for my health, it hasn’t come without some challenges. It changed the way I view my body. After all, it’s a bit hard to feel sexy when you have a bag of pee hanging off you. But body confidence and my perception of my body is something I’ve been working on since my surgery and will continue to work on.

Every experience in life is an opportunity for us to learn and grow.

Choosing to have my stoma was a great decision for me and I’m so proud of myself for taking control of my health to allow myself to experience my life to its full potential.

Take care,

Anita x