The Bag Is Part of My Life, Not All of My Life

There was a time when my life revolved around one question.

Where’s the nearest toilet?

Not occasionally.

Not when I was travelling somewhere unfamiliar.

All the bloody time.

Before my stoma, ostomy surgery, I could spend hours trapped in the house because I simply couldn’t trust my bowel. Going out for an hour could feel like a military operation. Going somewhere without a toilet? Forget it.

Nature walks were difficult. Longer car journeys were difficult. Holidays were possible, but they had to be carefully planned around what my body might decide to do.

And spontaneity?

That had practically disappeared.

Then something changed.

I started to realise that I was living again.

Not because everything suddenly became perfect.

It didn’t.

But because my life stopped being controlled by my bowel.

And that distinction changed everything.

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I knew I was living again when I stopped looking for toilets

One of the first things I noticed after my stoma, ostomy surgery was how different it felt to go somewhere without constantly searching for a toilet.

I could go into the woods.

I could walk through a park.

I could go into the hills.

I could sit in the garden.

I could spend half a day somewhere.

And I didn’t have that constant thought running around my head:

“Where’s the toilet?”

Before surgery, I could be limited to an hour or so because my bowel would start grumbling, gripping and giving me that unmistakable warning:

“You’d better find a toilet. NOW.”

And once that started, there wasn’t much negotiating with it.

I remember how frustrating that was.

You couldn’t simply say, “I’m enjoying myself, I’ll stay another hour.”

Your body made the decision for you.

After my stoma, ostomy surgery, things were different.

If my bowel decided to have a little tantrum, the output had somewhere to go.

That meant I could actually stay out.

I could relax.

I could enjoy myself.

And slowly, I started to realise something I hadn’t appreciated for a very long time:

Freedom isn’t necessarily doing something extraordinary.

Sometimes freedom is sitting outside in the sunshine without wondering whether you’re going to make it back to the toilet.

Sometimes it’s walking along a canal.

Sometimes it’s getting in the car and seeing where the day takes you.

Sometimes it’s simply saying:

“Yeah, okay. Let’s go.”

At first, I still needed my safety net

Now, I don’t want to give you the impression that I immediately skipped out of hospital thinking:

“Right! I’m off for a three-day adventure!”

Absolutely bloody not.

At first, I took spare clothes.

I took extra stoma, ostomy products.

I prepared for every possible disaster.

And that’s completely understandable.

You need to build that relationship with your stoma, ostomy.

You need to learn what works for you.

You need to learn how your body behaves.

You need to find products that suit you.

You need to develop that feeling of:

“I’ve got this.”

And confidence doesn’t appear overnight.

It builds every time you successfully do something you were worried about.

You go out for an hour.

Then two hours.

Then three.

Then perhaps half a day.

And eventually you realise:

“Hang on. I’ve been out all afternoon and I haven’t thought about my bag once.”

That is a huge moment.

Because confidence isn’t always about feeling completely fearless.

Sometimes confidence is simply forgetting about your stoma, ostomy because you’re too busy living.

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I didn’t want my life to become a list of things I couldn’t do

One of the biggest things I learnt through everything I’ve experienced is that I don’t look at problems anymore.

I look for solutions.

That doesn’t mean I can do absolutely everything.

My body still has limits.

I still have fatigue.

I still have days when my bowel decides to behave like a complete bloody drama queen.

I’ve had leaks.

I’ve had colic.

I’ve had days where I’ve had to cancel plans.

I’ve had days where my body has basically said:

“Nope. We’re staying home.”

And I’ve learnt to listen.

Because if I don’t listen, my body will make me pay for it.

But there’s a huge difference between saying:

“I can’t do this.”

and asking:

“How can I make this work?”

That little change in language can make a massive difference.

Perhaps I can’t do four activities in one day.

Okay.

Let’s do two.

Perhaps I can’t drive both ways.

Okay.

I’ll drive there and someone else can drive home.

Perhaps I can’t lift something heavy.

Okay.

I’ll ask someone to help me.

And that’s something else I’ve learnt:

Asking for help isn’t weakness.

In fact, sometimes it’s one of the strongest things you can do.

My definition of a good day has completely changed

These days, a good day doesn’t have to involve anything extravagant.

I don’t need a five-star hotel.

I don’t need an expensive day out.

I don’t need to travel halfway across the country.

A good day might be taking my grandson out during the school holidays.

We might walk the dogs.

Go to the cinema.

Visit a sculpture park.

Make a packed lunch.

Explore somewhere local.

Or we might simply spend time together.

Those ordinary moments have become incredibly precious to me.

I also love days with my husband where we get up, have a good breakfast and decide what we’re going to do.

Sometimes we’ll go to a local market.

Sometimes we’ll find somewhere to explore.

Sometimes we’ll just get in the car and see where we end up.

And that’s the important bit.

Choice.

I can choose.

Before, my choices were often dictated by my bowel.

Now I have choices again.

And I don’t take that for granted.

A bad times, day doesn’t mean I’ve gone backwards

I’ve also learnt that having a good life doesn’t mean having good days every day.

I had a day recently when I was out with my grandson.

We were doing a Lego trail and suddenly my stomach started playing up.

Then came the colic.

And if you’ve experienced it, you’ll know what I mean.

It bloody hurts.

You can barely move.

You’re belching.

You can feel sick.

You just want to curl up somewhere and disappear.

So eventually I had to tell my grandson:

“I’m really sorry, but we’re going home. We’ll come back another day.”

And you know what? My grandson ok and he was ok with it.

That’s okay.

Going home didn’t mean I’d failed.

It didn’t mean my stoma, ostomy had ruined my life.

It meant that that particular day my body needed something different.

That’s an important distinction.

A bad time/day is just a bad time/ day.

It doesn’t have to become a bad week.

And it certainly doesn’t have to become a bad life.

We did return to complete the Lego trail a couple of days later and grandson was happy.

I’ve had to learn how to rest

This has probably been one of the hardest lessons for me.

I am not naturally good at stopping.

I used to say:

“I’ll stop when I’m dead.”

My husband has now banned me from saying that. 😂

And to be fair, he’s probably got a point.

Because I have learnt that pushing my body doesn’t make me stronger.

Sometimes it just makes me exhausted.

So now I pace myself.

I might work for a couple of hours.

Then I’ll rest.

I might help my son in his garden.

Then I’ll come home and sit down.

I might have my grandson for the day.

I’ll make sure there are quieter periods built into it.

And sometimes resting means putting some absolute rubbish on the television and letting my brain switch off.

There is nothing wrong with that.

Rest isn’t wasted time.

Rest is part of living.

I’ve stopped blaming my body

This has been a huge change for me.

I used to see my body almost separately from myself.

It had been through so much.

Surgery.

Treatment.

Healing.

Scarring.

Pain.

And eventually I realised:

My body wasn’t my enemy.

It had actually been fighting bloody hard to keep me here.

So now, when my body says:

“Enough.”

I listen.

When it needs rest, I rest.

When I need to change my plans, I change them.

I don’t blame and shame my body for having limits.

And I certainly don’t blame my stoma, ostomy.

If I have a leak, it doesn’t mean my bag is rubbish.

It doesn’t mean I’ve done something wrong.

Sometimes things just happen.

I deal with it.

Then I carry on.

And then there was the bloody dog…

One of my favourite reminders of how far I’ve come happened because of my borrowed dog.

He is a Cockapoo.

And like many Cockapoos, apparently his brain occasionally leaves the building. 😂

He dropped his ball into the canal.

Unfortunately, he dropped it somewhere he couldn’t get back out.

So what did I do?

I lay on my stomach, reached down and hauled the little sod out.

I got the dog.

I got his ball.

I got myself back up.

And only afterwards did I think:

“Oh shit. My stoma, ostomy.”

I hadn’t thought about it.

Not once.

I was too busy rescuing the bloody dog.

And that, to me, was a massive sign of how far I’d come.

My stoma, ostomy hadn’t stopped me.

I hadn’t stood there thinking about all the things that could go wrong.

I simply got on with it.

And that’s what I want for other people living with a stoma, ostomy.

Not perfection.

Not pretending there aren’t difficulties.

But getting to the point where your bag isn’t occupying every thought in your head.

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Your comfort zone isn’t where your life has to stay

I’ve learnt that confidence grows when you gently step outside your comfort zone.

Not by throwing yourself into something terrifying.

By taking little steps.

Perhaps today it’s walking a little further.

Perhaps tomorrow it’s going to a café.

Perhaps next week it’s taking a longer journey.

Perhaps eventually it’s doing something you genuinely never thought you’d be able to do.

And yes, you might discover that something doesn’t work.

That’s okay.

You’ve learnt something.

Try another way.

Find a solution.

Adapt.

Compromise.

Keep moving forward.

Your comfort zone can be somewhere you return to.

It just doesn’t have to become your permanent home.

I don’t want people to see my illness

This is something that has become incredibly important to me.

I don’t want people looking at me and thinking:

“Oh, there’s that poor woman with a stoma, ostomy.”

I don’t want sympathy.

I want people to see me.

The woman with the purple hair.

The woman who takes her grandson out.

The woman who walks dogs.

The woman who gardens.

The woman who makes beautiful lingerie.

The woman who creates memories.

The woman who sometimes swears at her dog. 😂

The woman who has good days and bad days.

The woman who gets tired.

The woman who keeps going.

I want people to see what I achieve, not what I’ve been through.

Because what I’ve been through is part of my story.

It isn’t my identity.

The little things have become enormous

Something else has changed.

I appreciate the ordinary.

Taking my grandson to school.

Going food shopping.

Walking along the canal.

Doing some gardening.

Making a cake.

Having a cup of tea with my husband.

Sitting in the garden.

Making a piece of lingerie and thinking about the woman who is going to wear it.

These might sound like small things.

But when you’ve had years where ordinary life wasn’t available to you, they become precious.

Success isn’t always climbing a mountain.

Sometimes success is:

“I got out of bed today.”

Sometimes it’s putting the washing on.

Sometimes it’s taking a shower.

Sometimes it’s making dinner.

Sometimes it’s smiling at a stranger.

Sometimes it’s getting outside for ten minutes.

And sometimes it’s simply getting to the end of the day and thinking:

“I’ve had a good day.”

That is success too.

If you’re wondering, “Is this my life forever?”

If you’re newly living with a stoma, ostomy and you’re sitting there wondering:

“Is this really going to be my life now?”

I want you to hear this.

This is a chapter.

It may be a difficult chapter.

It may be a confusing chapter.

It may be a bloody frustrating chapter.

You may worry about leaks, smells, noises, clothing, intimacy, food, travelling and what other people think.

You may grieve the body you had before.

You may wonder whether you’ll ever feel confident again.

But this isn’t the whole story.

You have so much more ahead of you.

There are places you haven’t explored.

People you haven’t met.

Memories you haven’t made.

Things you’ve never tried.

Laughter you’ve not yet had.

And perhaps most importantly, there is still you underneath all of this.

Your stoma, ostomy is part of your life.

It is not all of your life.

I lost three years. I’m not wasting the rest.

Those three years taught me something I will never forget.

Life is precious.

Not just the big occasions.

The ordinary days.

The boring days.

The silly days.

The days when you go out for a walk and end up having a coffee.

The days when you spend hours with your grandchildren.

The days when you make something beautiful.

The days when you sit beside the person you love and watch a film.

The days when your plans go completely wrong.

They’re all still life.

And I am not prepared to be a prisoner anymore.

I want to create memories.

I want to explore.

I want to laugh.

I want to help people.

I want to keep learning.

I want to keep making beautiful things.

I want to break down the barriers around living with a stoma, ostomy.

And I want other people to realise that they can have a bloody brilliant life too.

Will everything be possible?

Probably not.

Will there be setbacks?

Absolutely.

Will there be leaks?

Probably. 😂

Will there be days when your body tells you to sit down?

Yes.

But none of that means your life has stopped.

So don’t wait until you feel 100% confident.

Take the little step.

Then another.

Listen to your body.

Respect your body.

Rest when you need to.

Ask for help.

Find solutions.

And keep discovering what you can do.

Because the bag might be part of your life.

But it isn’t your whole life.

And there is still so much life waiting for you.

Go and bloody well live it. ❤️

A little challenge for you

What is one small thing you could do this week that would make you feel like you’re living rather than simply getting through the day?

It doesn’t have to be huge.

A walk.

A coffee.

A visit.

Sitting in the garden.

Trying somewhere new.

Or simply saying yes to something you’ve been putting off.

And if you’re struggling to know where to start, I’ve created my 10 Daily Tasks guide to help you take those little steps and create some structure on the days when everything feels a bit much.

Drop me a message and I’ll tell you how you can get your copy. ❤️