There are many misconceptions about living with a stoma, and even with years of experience caring for someone with one, I still had questions and worries before my own surgery. I thought I knew what to expect, but it turns out there were quite a few things I hadn’t prepared myself for!
I am six years into having my second stoma, having had one as a baby which was reversed at 18 months old. I have watched my children have the same, and I have seen social media grow into a hub of information and resources for people wanting answers about what life is actually like with one. On the outside, it may have seemed like I should have been the most prepared and informed person to go through this, but I most definitely didn’t feel like it.
We see lots of content about the stigma around living with a stoma. Is that quite as true anymore in modern society? I am on the fence about this. But what I do know is that sharing our experiences and connecting with others can only make society a better place. It makes people more aware that they are not the only ones, that stomas can have a wonderfully positive influence on someone’s life, and that they shouldn’t be looked upon negatively.
Seeing your stoma for the first time after surgery
Initially, I was surprised at how shocked I was when looking down following surgery. I had changed my child’s stoma bag every day for five years. I asked for the surgery; it wasn’t on the table until I asked for it to be. I was sure that as soon as I woke up, I would crack on, change my bag and get on with life, no problems. This is where I was very wrong!
Seeing one and even managing another person’s stoma was not enough to prepare my brain for the realisation that something that should be inside my body was now outside, functioning as an outlet for my waste, with my bottom made redundant.
I think I underestimated how different it would feel when it was my own body. I knew how to manage a stoma, but I hadn’t really prepared myself for how I would feel about having one. I went on to learn that this reaction isn’t unusual; it can take people days, even weeks, to feel comfortable looking at and managing their stoma independently. Everyone adjusts in their own time, and there is support available from your stoma nurse if you need it.
Why do people feel sorry for someone with a stoma?
After having surgery, I had a lot of people saying sorry that I needed it, feeling sorry for me, and looking sad and concerned for me. These were reactions I couldn’t understand, as for me, it was something that was going to stop my daily pain and help me be the mum I wanted to be.
It was a ray of hope. It was my chance to be who I wanted to be without limitation and suffering.
It was my Super Bowl!
How often should you empty a stoma bag?
Getting used to emptying at the right times and knowing when my bag was at its maximum capacity for safe emptying, without putting strain on the appliance and potentially causing a leak, was something that took time. Having an ileostomy, I had to get used to the heavy feeling of watery stool in my bag when a lot would come out at once if I ate something that didn’t agree with me.
It would be quite the shock when sitting down in a coffee shop chatting away with a friend, only to stand up and realise you have a very heavy bag because you forgot you even had one!
Emptying regularly, and for me, every time I needed to urinate, meant I could avoid such situations. There isn’t one emptying routine that suits everyone. Output can vary depending on your type of stoma, what you eat and drink, and your individual circumstances. Your stoma nurse can help you understand what to expect and find a routine that works for you.
Can you drink caffeine with a stoma?
Caffeine is something I have had to cut out since having surgery. It was something that would increase my output, and I would drink a lot of it when I had a young child, so this wasn’t a great fit anymore. Other foods, such as skins, some grains and sweetcorn, are things I just can’t tolerate. It doesn’t matter how much I chew; my bowels do not like them!
Some people will say, “Just chew and you’ll be fine,” but from my experience of chatting with other ostomates, we are all very different in our tolerance levels to food. What one person can manage, another may not; just like those without a stoma!
It is important to remember that everyone’s experience is different, and what works for me might not work for you. Your stoma nurse or dietitian can offer advice based on your individual needs, particularly when introducing foods following surgery.
For me, it has been about learning what my body can and can’t tolerate, trying small amounts of food at a time when appropriate, and seeing how my body responds. It has taken time, but I’ve learnt that there is no one-size-fits-all approach to eating with a stoma.
Adjusting to life after stoma surgery
You can do all the research and chat with others in the world, but until you experience your own surgery and recovery, you just won’t know how your body and mind will react to the change.
It is such a life-changing thing to go through, and even with all my experience, there were things I simply couldn’t have prepared myself for. You will learn so much about yourself and those around you as you adjust to your new ‘normal’. Be patient with yourself, ask questions and don’t feel that you need to have everything figured out straight away. I do hope you find comfort in the things I have shared.
