I’ve been through quite a journey with my stoma over the last 12 months, and it’s been a bit of a rollercoaster.

Not long after my surgery, I started experiencing leaks. Initially, it wasn’t too concerning because I figured out that switching from flat to convex bags made all the difference. That change kept me feeling safe and secure for a good while. Then, I started gaining weight—something I’d never really managed before. I was thrilled at first, especially since I was finally filling out in all the right places!

But, of course, the weight gain didn’t stop there. Eventually, it started causing problems with my stoma again. The bags began leaking, my skin became irritated and sore, and I no longer felt as secure as I had before. It became clear that the extra weight was creating a deeper crease where my stoma sits – a crease that wasn’t there before.

So, I made some changes. I started exercising and eating a more balanced diet, which helped me lose weight pretty quickly. But then, the loose output that came with the new diet led to more leaks. It felt like a constant battle. Just as I’d fix one issue, another would pop up. Eventually, I found some stability in my weight, and with the help of gelling crystals and seals, I managed to get the loose output under control.

But as the holiday season rolled around, I started to worry again. I wanted to enjoy all the festive treats, but the fear of gaining weight and dealing with leaks loomed over me. I don’t want to be the person who’s obsessed with their weight, but it feels like I might have to be. I like the way I look now—let’s be honest, my opinion is the only one that really matters, but even a few extra pounds seem like a big deal when they can so dramatically impact my quality of life. The thought of having to stay skinny forever is daunting.

That then leads me to thinking about why I am in this situation. Why does my stoma sit in a dip? It’s simple. It’s because I was so determined to keep my Jpouch. I know I made the right decision for me at the time with my first ileostomy, by deciding to have Jpouch created in the first place. Psychologically, the whirlwind that led to my stoma in 2007, and the lack of support left me feeling like a Jpouch was the ONLY option. But, I had a stoma again in 2014. It was placed on the other side. If I’d kept that one, which was a very good one by the way, I wouldn’t have any of my current issues. I wouldn’t have this constant anxiety and frustration. It’s a tough pill to swallow, knowing that these limitations are something I’ll have to live with for the rest of my life, and they’re partly because of my own decisions.

So yeah, sometimes I feel pretty stupid. That second stoma in 2014 was a game-changer for me. It gave me a quality of life I hadn’t had in years. But reconnecting the J-pouch led to over two years of being really unwell, constantly battling pouchitis, and dealing with nighttime incontinence. I lost so much time that I could have spent actually living my life.

We live and learn, don’t we? And hindsight is a wonderful, yet pointless, thing!