What does daily life with a stoma look like? | by Rachel

Daily life with a stoma will look different for everyone, depending on your lifestyle.

A stoma does not define us, and when you are past surgery and the initial recovery stage, it shouldn’t take up a lot of your day.

In this blog, I hope to shine a light on my life as a full-time mum, with a stoma and my children, who have their own health challenges.

Our family is far from conventional, but we don’t let stoma life take over and define us.

We are so much more, and we try to live life to the full every day, despite what extra fun we have been dealt.

What does a stoma care routine look like?

This fits in with our bedtime routine, as that is what works best for us as a family.

Building it into the end of the day, after a bath for my child with a stoma, makes it feel less like an event by tagging it on the end. It takes no time at all when planned appropriately, with everything to hand.

A matter of minutes and it’s a fresh bag done. For me, it’s the same when the kids have gone to bed and I can shower, doing a fresh bag change at the end of each day. With our ileostomies, changing the bag every day is what’s needed for our output.

How often do you empty a stoma bag?

It’s like asking someone, “how long is a piece of string?”!

I don’t count or keep note of this, and I think when you are years down the road of your journey, you instinctively know when it’s too often and the consistency has changed.

If you don’t feel right and you begin to feel poorly, you’ll know when you need to monitor it. Overnight, I try to avoid eating and drinking close to bedtime to avoid a wake-up. I am waking up for my toddler and mini ostomate to empty their bag, so if mine has got output, I will do it then.

Throughout the day, my golden rule is to always empty when I use the toilet to urinate. I am there already, so why make double the trips? This also keeps it from filling up too much most of the time, unless I have a large output in one go, then of course I will make the necessary toilet trip.

Managing the stoma life admin

When you have multiple members of the family living with a chronic illness, medical admin can feel overwhelming at times.

I have to be super organised with appointments which, no matter how much I try to avoid it, all seem to come at once. Regular appointments for the kids and myself, sometimes an hour away, require lots of juggling between my fiancé’s job and childcare.

We have a shared calendar on our phones, a calendar we update on the wall, and still we seem to forget things! That’s before you are chasing monthly for medication, test results and urine sodium checks, which are common for children with Hirschsprung’s Disease.

It’s very rare that a month runs smoothly without me having to chase things with the pharmacy. Speaking to other medical mums in the community, I am not alone, and this unfortunately is the norm.

Common misconceptions about life with a stoma

When you have stoma surgery, there is a period of wondering how it will change your life and what you may have to change. For me, it has only enabled me to do MORE!

• I can go for a run.
• I can spend the day out with my family, without worrying about the toilet.
• I can go away for the weekend and not plan the toilet stops and go with the flow.

The anxiety of doing things and being spontaneous was removed when I found the right stoma bag for me, and was able to put all my trust into it.

Finally… Living life with a stoma

Having stoma bag changes ready to go, in your car and extras for going away means that, most of the time, there is nothing that should stop you living life with a stoma.

Of course, other health concerns may mean you need to make allowances, but having a stoma alone shouldn’t mean putting your life on hold.

It takes confidence to get to this stage, and that confidence doesn’t come overnight. If you are new to life with a stoma and you are reading this thinking, how am I ever going to get to that point?, please know that I felt that way too.

Ostomates can take months, sometimes years, to feel the anxiety lift. For some, it may never completely go away, and that’s OK too.

There will be days when you feel completely confident and days when you question everything. There will be accidents, worries, leaks and moments when you wonder if you will ever feel like yourself again.

But slowly, you learn. You learn what works for you. You learn your body, your stoma and your routine. You find the products you trust, you work out what you need to carry with you, and hopefully you’ll get to live the life you deserve.

Rach
@gutsy.mum