Hearing your doctor tell you you need to have surgery to have a stoma is scary. It’s daunting and in some cases completely unexpected. It’s likely you may not know anything about stomas and they’re such a big change. There’s also a chance that it is something you’re going to have to get your head around pretty quickly. I had two days between being told I might need surgery and actually having surgery. In those 48 hours, I tried to find out as much as possible about life with a stoma. I was lucky as I had really supportive stoma nurses who spent a lot of time with me. They let me ask them a bazillion questions and even had me practice putting bags on.

I thought I would do a post on 5 pieces of advice I wish I’d had at the time of my surgery. Hopefully these will help any of you who are about to go through ostomy surgery or have recently had it.

It will start to feel normal

It’s likely that the first few weeks after surgery, it will feel very strange. I remember being asked by the nurses a few days after surgery how I felt and all I could say was “it feels so strange”. I felt so aware of the fact there were two bags on my stomach. I’d been struggling to walk a bit too as I’d lost so much weight and strength. Overall, I just didn’t feel myself. Even a week later when I left hospital, I still felt hyper aware of the bags. It took a few weeks but trust me, the bag does start to feel normal. It was about a month before I stopped being hyper aware and 6 months before I started to feel more normal.

You will have bad days, and that’s okay

I was determined to try and stay strong and not let having a stoma get to me. A few days later I had a complete breakdown for the whole day. It turned out that my stoma nurses and doctors had been expecting for that to happen and in hind sight, it would have been weird if I hadn’t. Having stoma surgery is a big deal. It’s major surgery which will impact your whole life. If you’re having surgery, it’s likely that you’ve been pretty ill before hand too. There are so many changes, it’s totally normal to be upset by it. It’s important to make sure you don’t bottle it up and have people around you who you can talk to too. Even now, two and a half years later, I still have days where I get down about my stoma and health. It’s okay to get down every now and then, and in the first few weeks there will likely be more downs than ups, just make sure that you have a support system and get help if and when you need it.

Find the right bags for you

Straight after your surgery, you will be given a certain type of bag. You might completely fine with them but there are many different types of bags. There’s a chance that a few weeks or months in, you’re bags might start leaking as you start moving around more and living your life. You might find you need a convex bag instead or try a different brand because they’re not sticking as well. Don’t be afraid to get samples from different brands and find the bag which is right for you. I went through a phase, about 3 months after surgery, where I could not get either of my bags to stick right. However after trying a few different types of bags and brands, I finally found one which worked for me.

There are three pieces of advice I wish I’d had early on. If you’re a newbie ostomate, or waiting for surgery, you might also find this post useful where I talk about (and answer) all the questions I initially had.

Finding your new normal can be difficult but trust me, you will find it. Having a stoma will likely have saved your life and it’s important that you try to not let it rule your life (although that can be difficult!).

If you have any questions, feel free to comment below or get in touch with me and I’ll do my best to answer them!
Katie May ❤️