One word to describe my attitude before surgery? Denial. Complete denial. I knew that people sometimes had to have a stoma bag because of ulcerative colitis, but I always had the mindset that I would never happen to me. Stoma surgery was always the worst possible outcome. I couldn’t look at a stoma bag. I didn’t want one. That decision was quickly taken out my hands in 2021, when I had the worst flare up of my life and stoma surgery was my only choice.
Because I was so against looking at and learning about stomas, waking up after surgery was a complete shock. I wasn’t told anything before surgery, because I didn’t want to know anything. So everything was new: it was a complete learning journey. I hope this blog helps to settle some worries about facing surgery. It is ok if you aren’t in the right mind frame to learn everything before (because I certainly wasn’t), but I hope my experience can help!
The emotional side of preparing for surgery
I had a night to prepare. I was told I was being taking down for emergency surgery in the morning. If I’m honest, it’s all a blur. I remember crying, a lot. The emotional side for me was sadness. I was so worried about my new body, the surgery itself and waking up in pain. I couldn’t focus on the future that was on the other side. But I’m glad I allowed myself to feel all that sadness, it was a good release and I’m glad I didn’t bottle it all up.
What recovery was really like in the first few weeks
I found recovery really hard. I was constantly in a state of fear. Fear that something may go wrong and fear for what my future was going to look like. I cried a lot. Simple tasks like showering, getting dressed and walking up and down the stairs seemed impossible. They would take so much of my energy. It felt impossible to visualise a future that I wanted. Physical recovery came quickly – my body was thankful for the rest and slow progress. Mentally, I feel like I am still recovering now. I don’t think my mental recovery will ever end. I find it very difficult to let go of what has happened to me. I think I have accepted that I will have a stoma for the rest of my life, but I can’t seem to forget my experience in hospital. Sometimes it gets me really down, but I remind myself that my body has been through a trauma and it is ok to feel this way. I remind myself how grateful I am to be here, alive, even if it means living with a stoma bag.
Adjusting to daily life with a stoma
This is something I found really challenging to begin with. There is a lot going on behind the scenes to make living with a stoma bearable. Bag changes were awful for me in the beginning. I found them so challenging, they used to take me so long and I was still very squeamish when it came to looking at my stoma. But now, this is just a part of my life. I do it without thinking, just like brushing your teeth. Do I have days that I absolutely dread doing it? Yes. But I don’t find it anywhere near as challenging as I used to. When it comes to remembering my stoma supplies, things have really gone downhill! It used to be a military operation for me – every time I’d leave the house, I would always have a couple of spare stoma bags on me in case of emergencies. Now? Well, I’m lucky if I remember. Part of me actually likes this though, it proves to me that I have got to a point where my stoma is no longer controlling my life. I’m not worrying about it 24 hours of the day, and this makes me happy. It makes me feel like me again. Although, I’m not sure how happy I would be if I had a leak whilst out and had no spare supplies but, touch wood, that hasn’t happened!
Advice I would give to someone about to have stoma surgery
Everyone’s experience is so unique, it can be hard to give someone advice.
If you are facing stoma surgery, my one piece of advice would be to try and familiarise yourself with stomas. Start following people on Instagram, do some research and ask questions. This will hopefully make everything feel less of a shock. However, my main piece of advice is to give yourself time. Time is the greatest healer. In the beginning, having a stoma feels like a lot, it is a lot, but you are a tough cookie and you’ve been through hell and come out the other side. You’ve got this!
