It’s probably one of the biggest questions you ask yourself after stoma surgery. Can I work? Can I go out? Will I still be able to socialise? Will I ever feel comfortable in my body again? And what happens if my bag leaks when I’m nowhere near home?

Living with a stoma

Living with a stoma shouldn’t take over every minute of every day. It will feel all-consuming initially, but as time passes and you heal little by little, life can resume, with adjustments made so you can carry on living. It is hard to avoid the bag stuck to your stomach 24 hours a day.

It can feel all-encompassing. Some people find themselves forgetting it is there as time goes on, while others never quite get there. What I am sharing has taken me years to get to a place where I can accept what I can’t change, and learn to be prepared and plan for all eventualities, so that my stoma doesn’t stop me.

Can I work with a stoma?

What type of job you do will impact how you approach this. If you have a stationary job, it may be easier to pop to the toilet, keep your bag empty and, if a leak happens, be able to sort it out quickly. If you have a manual job, or one that requires you to move around or travel a lot, this may feel a bit more daunting.

Your employer should make reasonable adjustments, such as providing access to suitable toilet facilities and allowing you to keep your supplies close by. Make sure to let your employer know if you are having stoma surgery and, with guidance from your medical team, have a conversation about your recovery time and what you need in place to help you return to work.

How will I feel about my body with a stoma?

On the Beyond the Pouch podcast, which I co-host with Eakin, we ask people to give us one word to describe their relationship with their body.

The most common response is: “It’s complicated”.

Having a stoma can change the way you see your body. There can be scars, a bag, changes in weight and a whole new set of things to think about when getting dressed or being intimate. But the fact is, if you didn’t have a stoma, there would probably still be something about your body that you weren’t 100% comfortable with.

Everyone has something they aren’t happy about in their life, and looking at it like that helped me gain some perspective. If it wasn’t my stoma, it would be something else. My stoma saved me and gave me my life back, so having that as my “thing” gives me some peace. I can’t change it. It isn’t going anywhere, so I have to crack on with it.

That doesn’t mean I love every part of having a stoma. It doesn’t mean I never have days where I struggle with how my body looks or feels. It just means I have found a way to make peace with something I cannot change. And for me, that has made a huge difference.

How will I manage bag leaks away from home?

This is the most worrying part of stoma life by far for me, and I know I’m not alone in feeling that way. Leaks can happen, and when they do, it is usually caused by my own error, such as not changing my bag soon enough, or eating something my body struggles to digest.

Little things, like rushing to get a new bag on while the kids need me, have always been my downfall. In an ideal world, leaks would never happen, but they do. You can worry about them, or you can learn to face them head-on.

I recently went to an all-day festival away from home, and was very anxious about the toilet situation. I was worried about queuing, the size of the toilet, emptying my bag and potentially having to deal with a leak. I spoke to some friends who suggested contacting the organisers about an accessibility pass.

This was a wristband which meant I could use the designated accessible toilets. Which, let’s face it, are pretty grim like the rest of them, but it meant I had the space to do what I needed to do. 

I went equipped with two baseplates already cut, pouches, wipes and everything else I needed. I used a bum bag to carry my supplies and emptied my stoma bag whenever I needed to pee, which worked out well. It meant my bag wouldn’t overfill and potentially cause a leak.

This was far better than pre-stoma life, when I would probably have had accidents and ended up living in the toilets for most of the day! Sometimes you have to look at what your life was like before your stoma, and remind yourself that life isn’t necessarily worse now. Sometimes it is just different.

Taking life with a stoma day by day

Imagining your life post-stoma surgery can feel impossible. There are so many things to consider and so many things you might worry about. If I could go back to my former self, I would tell her to go with the flow more (pun intended!). You don’t need to have everything figured out straight away. You don’t need to know exactly how you’ll cope with every possible situation. Learn what works for you. Find a routine that makes you feel comfortable. Prepare for the things you can prepare for, and try not to spend all your energy worrying about the things you can’t.

There will be good days, challenging days and probably a few awful days too.

But your stoma is only one part of your life. It doesn’t have to be your whole life.

And yes, you will get through it. You have to!

Rach
@gutsy.mum