My timing is a bit off but Aug 7, 2025 was 1 year from my TPE surgery which created my urostomy and colostomy.
It's been quite a year! In many ways, I cannot believe it's been a whole year! Everything seems to have moved at warp speed.
On the other hand, it feels like a lifetime. I cannot imagine my life without my twin lifesavers. Everything has become so normal. I don't think twice about going out with them. I am still careful to empty before I leave and I always carry change supplies with me but all of that is just a new habit not something I think about.
If anyone is reading this and worried about getting a stoma or considering refusing one, I hope you can see from my story that it is not the big deal you think it is.
I don't mind admitting that I was terrified before my surgery. I had no choice, I would have died without that surgery. In fact, I was actively dying waiting for it. I was so weak by the day of surgery my husband had to help me walk even though I was using a walker. I feared they would cancel the surgery and knew that I would die if they did. Nevertheless I was terrified of what the stomas would mean for my life.
There was a steep learning curve at first but the stomas quickly became the least challenging part of my recovery. And today, barely 1 year later, my stomas are so much a part of me that I cannot imagine life without them.
Hi Susan13
Congratulations on reaching that big milestone! It’s hard to imagine when you first have a TPE that stomas just become a part of your normal life, but they do. Life changing, but life saving which is the most important thing.
I always accepted mine, right from the start, but I know that some people struggle with the thought of them. For me, it’s just a different way of getting rid of waste and I enjoy never having to get up in the night again to go to the toilet!
I was away for a few days last week, and it’s second nature to carry some extra supplies in my bag and a change of clothes, but all was well and it’s just part of my routine to be ready for anything!
Sarah xx
That’s really good news for you both-congratulations! I think the total exenteration definitely gives the best chance when I consider others I know who have just gone for partial.
I hope you’ll have a lovely holiday and if you have any questions about travelling with stomas, please just ask. I go abroad quite regularly and while it can be daunting at first, you gain confidence after getting that first trip under your belt,
Sarah xx
