Photographer with a stoma | Pinkie Pete

2019, the year of my life-changing (kind of) surgery

The beginning of the year is a great time for reflection and was particularly poignant for me this time around. 2019 was a great year professionally, but personally, a little tougher. There have been a lot of awesome moments; great weddings, family shoots, lovely family times with our niece & nephew, fun holidays, and Amy graduated from her PhD! However, the end of the year was a little more difficult in the Fuller household, and I’d like to share this with you as it will form the topic of a series of blogs across 2020.

For those unaware, I had major surgery planned for September. It was for a genetic condition called Attenuated Familial Adenomatous Polyposis (AFAP), which I can’t spell without Googling. It causes polyps (small bumps) to develop in the large bowel, any one of which could eventually become cancerous. Treatment: surgery to remove the large bowel. This was pretty scary news to receive, and quite difficult to process when you are otherwise perfectly fit and healthy. No symptoms, no illness, yet. However, given my family history, taking this preventative step made complete sense. Just before I went to university, my mum was diagnosed with bowel cancer and after a couple of years of treatment, passed away. So although I had no symptoms and no illness, it was very clear to me what that illness would look like and the fate that beheld me if I didn’t have surgery.

It was actually July 2018 when I was told that I would need this surgery, and so it has been something I’ve been waiting on for a little while. I was given three options to chose from. I won’t go into detail about them right now. I’m not shy about discussing it, but maybe let’s leave that for another time! The option I did choose was the one which completely eradicated my risk of developing bowel cancer, and would allow me to go back to living my normal life quickly. I chose to have the whole of the large bowel removed and have a stoma. It took a while for me to come around to the idea of it. The moment I heard the surgeon say, have a permanent stoma, my brain said “Nope, not having that one! Young people don’t have those”.

And yet here I am, introducing Pinkie Pete, my stoma.

Yes, he has a name.

And don’t worry, I’m not going to share a picture of him here!

I know people are often wary of, shy away from or don’t like talking about anything medical-related. If that’s you, thanks for still reading this far in! But I decided that by writing a series of blogs about my journey I might help someone freak out a little less when they are told they need a stoma, and if so, then sharing my story will be 100% worth it.

Here’s a little information about myself, to put things into context. As well as being a photographer, my other passions in life are surfing, stand up paddle boarding, and being outdoors in nature. My life is busy. Don’t get me wrong I love lazy days at home filled with tea, but I mainly like to fill up weekends with my wife travelling to places we can surf, paddle, walk, explore, tire ourselves out, being silly and laughing our way through it all. Our hobbies and passions have taken us around the world and we have so many more places that we want to visit.

So after meeting with the surgeon and weighing up my options, I started thinking about what life would be like with a stoma, hang on, what actually is a stoma? Before all this, I thought I knew. But turns out I really didn’t know a huge amount about them, how they work or what life is like with one. Sure the surgeon explained it, but I needed to do my own research. A more official definition is: “a stoma is an opening on the abdomen that is connected to your digestive system to allow bodily waste to be diverted out of your body”. So basically, it is a small piece of the end of my small intestine which pokes out of and has been sewn onto my tummy, where my poop now comes out of. I have a stoma bag lying over my stoma, which collects that poop.

So, to summarise, I shit into a bag now.

And that’s cool with me.

And that is exactly why I am writing this series of blogs.

I want to address the misconception that stomas are just for the elderly. They are not. They are not disgusting things you wouldn’t want anything to do with. And they certainly don’t stop you living your life! If anything, they can give you back your life. And in my case, it can let me get on with living my normal life without a significant risk of cancer hanging over my head.

I am also writing this blog because the journey from 30-year old Dave with no stoma, to 32-year old Dave with a stoma called Pete is one I need to get out there, to help myself process what happened and acknowledge my new self. This surgery has changed my life. But not in the way I thought. And not as much as I thought. And it’s been both physical and mental.

So in the end, I’m still the same Dave. It has been life-changing, yeah, but just… kind of 🙂

Over the next few blog posts I am going to be sharing my hospital journey (it was a bit of a wild ride, not in a good way), how I prepared for having this new body, how I have coped with this new body, the importance of openness and its power to help you prepare and cope when faced with adversity, how some incredible friends and family have helped us along the way, and my journey back to normalness with a stoma. I would love to hear from other people that have been in a similar situation, so please do leave a comment or get in touch if you would like to!!

A photographer with a stoma

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