Waking Up With a Urostomy

What happens when the way you wee changes forever?

There are some things nobody expects to have to learn how to do twice.

Having a wee is probably one of them.

Most of us learn remarkably early that urine comes out when we go to the toilet. We spend the rest of our lives barely thinking about the mechanics of it.

Until, for some people, that changes.

A urostomy creates a new route for urine to leave the body. The most common form is an ileal conduit: a surgeon takes a short section of small bowel, connects the ureters to it and brings one end through the abdominal wall to form a stoma. Urine then drains through the stoma into a bag worn on the abdomen.

The bowel is reconnected and continues doing its usual job. The isolated piece becomes the conduit through which urine travels.

The result is extraordinary when you stop and think about it.

A tiny piece of bowel has been given an entirely new job.

And you have to learn an entirely new way of living with it.

The first time you see it

Before surgery, somebody may draw a mark on your abdomen showing where the stoma is likely to be.

You might have been shown bags.

You may have met a stoma nurse.

You may have read every leaflet you could find.

None of that is quite the same as looking down after surgery and realising:

that's mine.

A new urostomy is usually red or pink and moist. It doesn't look like skin because it isn't skin; the visible surface is bowel mucosa.

Initially it may also be swollen.

There may be surgical wounds, tubes, drains or stents.

And attached to your abdomen is now a bag containing urine.

For some people, seeing their stoma for the first time is fascinating.

For others it is frightening.

Some feel disgust.

Some feel relief.

Some don't want to look at all.

And some experience several of those reactions within approximately five minutes.

There isn't a correct emotional response to waking up with part of your internal anatomy suddenly visible on the outside.

And then it wees

One of the strangest adjustments is that you no longer decide when your urostomy produces urine.

An ileal conduit doesn't have the storage and voluntary emptying function of a bladder.

The kidneys continue making urine.

It travels down the ureters.

Through the conduit.

Out of the stoma.

And into the bag.

You don't sit on the toilet and tell your stoma that now would be convenient.

It has absolutely no interest in your schedule.

This becomes particularly apparent while changing the appliance.

There is an almost comic inevitability to carefully cleaning and drying the skin, positioning everything perfectly and preparing to attach a fresh bag...

...only for the stoma to produce another little stream of urine.

Welcome to urostomy life.

The bag

Before surgery, the idea of wearing a bag of urine attached to your abdomen can sound enormous.

Once you actually live with one, it becomes considerably more mundane.

A urostomy pouch sticks to the skin around the stoma and collects urine continuously.

There is a tap or outlet at the bottom, allowing the bag to be emptied into the toilet.

That means you still go to the toilet.

You just do it differently.

And suddenly you acquire an impressive amount of knowledge about adhesive technology.

One-piece.

Two-piece.

Flat.

Convex.

Soft convex.

Barrier rings.

Adhesive removers.

Skin barriers.

Different manufacturers.

Different shapes.

Different capacities.

The first appliance you're given may work beautifully.

Or it may not.

Bodies aren't flat pieces of paper. They bend, move, crease and change shape when we sit down. Stomas differ in size, shape and position. What works brilliantly for one person may be completely wrong for another.

Finding the right appliance can therefore be a process rather than a single decision.

And when you finally find one that works?

That little piece of adhesive engineering can give an astonishing amount of confidence back.

Your skin suddenly matters enormously

The skin around a stoma — the peristomal skin — ideally looks much like the surrounding abdominal skin.

But urine sitting against skin can cause irritation, and poorly fitting appliances can allow moisture underneath the adhesive.

So you learn to look.

Is the opening around the stoma the right size?

Is there redness?

Soreness?

Broken skin?

Is the seal holding?

Has the shape of the abdomen changed?

Early after surgery, the stoma itself can reduce in size as postoperative swelling settles, meaning the appliance may need to be resized.

These tiny observations become part of everyday maintenance.

Not because somebody with a stoma should spend their life worrying about it.

Quite the opposite.

Good stoma care is what allows you to spend less time thinking about it.

Then comes the first leak

Leaks are probably one of the things people fear most.

And yes, they can happen.

Sometimes an appliance loses its seal. Sometimes body shape, movement, skin problems or an imperfect fit contributes.

The first leak can feel catastrophic.

There is urine somewhere it absolutely wasn't supposed to be.

You may feel embarrassed.

You may wonder whether you can ever trust the bag again.

You may temporarily conclude that you will never leave your house without twelve spare appliances and an emergency suitcase.

Then you clean yourself up.

You change the bag.

You work out what happened.

Perhaps you speak to your stoma nurse.

And life continues.

Confidence after surgery isn't necessarily the belief that nothing will ever go wrong.

Sometimes it is the knowledge that:

If something goes wrong, I know what to do.

Night-time is different too

Your kidneys don't clock off when you go to sleep.

So neither does a urostomy.

Many people connect their urostomy pouch to a larger night drainage bag, allowing urine to drain while they sleep without the smaller pouch filling repeatedly overnight.

The first few nights can feel incredibly medical.

There is tubing.

There is drainage equipment beside the bed.

You think about where the tube is.

Whether it is twisted.

Whether everything is connected.

And then, eventually, attaching the night bag can become about as interesting as plugging your phone into its charger.

That transition is one of the strangest things about adapting to medical equipment.

The extraordinary becomes ordinary.

Clothes

Then comes the wardrobe.

Will trousers press against it?

Can I wear jeans?

Will everybody see the bag?

Can I wear something fitted?

What about swimming?

The answer is much more individual than a simple list of rules.

People with urostomies wear ordinary clothes.

They work.

Exercise.

Swim.

Travel.

Have sex.

Go out for dinner.

Wear dresses.

Wear suits.

Wear bikinis.

Wear whatever makes sense for their body and their particular stoma.

Sometimes clothing preferences change.

Sometimes they don't.

And sometimes the greatest change isn't what you wear at all.

It's reaching the point where you stop assuming everybody is looking at your bag.

Most people aren't.

The mucus nobody warned you about

There is another peculiarity worth mentioning.

Remember that the conduit is made from bowel?

Bowel produces mucus.

Being reassigned to the urinary system doesn't make it forget.

So mucus can appear in the urine inside a urostomy pouch.

For somebody seeing it without having been warned, that can be rather alarming.

For somebody who understands why it happens, it becomes another example of the wonderfully strange adaptability of the human body.

A piece of intestine is carrying urine.

But biologically, it remains intestine.

Body image is complicated

There is no point pretending that major urinary surgery cannot affect how somebody feels about their body.

There may be scars.

The abdomen may look different.

There is a stoma.

There is a bag.

Perhaps the surgery happened after months or years of illness that had already changed the person's relationship with their body.

People can feel differently about all of this.

Some name their stoma.

Some celebrate their “stomaversary”.

Some show their bag proudly.

Some don't particularly want anybody else to see it.

Some eventually love their changed body.

Others simply make peace with it.

All of those are legitimate ways to live with a urostomy.

You don't owe anybody an inspirational relationship with your surgery.

Neither gratitude nor grief cancels the other

This might be one of the hardest things to explain about life-changing surgery.

A person can be profoundly grateful for what an operation has given them and still grieve what it took away.

You can think:

I'm glad I had this operation.

and:

I wish I had never needed this operation.

Those sentences do not contradict one another.

For somebody who lived with severe bladder disease, recurrent infection, pain, retention or neurological bladder dysfunction, urinary diversion may bring enormous relief.

A urostomy can represent independence.

Safety.

Freedom from a bladder that no longer worked.

Freedom from treatments that had taken over daily life.

A chance to do things again.

But reaching that point may also have required major surgery and permanent physical change.

A good outcome doesn't erase the journey required to reach it.

Learning to trust your body again

Perhaps this is the part of recovery we talk about least.

Surgical wounds heal.

People learn how to change appliances.

Hospital appointments become less frequent.

Physical strength gradually returns.

But trust can take longer.

When your body has repeatedly surprised you with pain, infection, dysfunction or illness, it can be difficult to stop watching it.

A sensation becomes a question.

A slightly different-looking urine becomes a question.

A twinge becomes a question.

Leaving home becomes a calculation.

Recovery can therefore involve something medicine cannot easily measure:

learning that you don't have to be frightened of your body every minute of the day.

That may happen gradually.

A short trip out.

Then a longer one.

The first overnight stay.

The first holiday.

The first swim.

The first time you realise you've gone several hours without thinking about your stoma.

Those moments don't appear in surgical outcome statistics.

But perhaps they should count as milestones too.

The strange new normal

At first, everything about a urostomy can feel medical.

The boxes of supplies.

The measurements.

The bags.

The night drainage.

The terminology.

The stoma itself.

Then something changes.

You find somewhere to store the supplies.

You can change a bag without concentrating on every individual step.

You know which clothes work.

You know what to pack when you go out.

You know your stoma.

You know your normal.

And the thing that once seemed impossible to imagine living with becomes...

your normal way of having a wee.

Not everybody will reach that point in the same way or at the same speed.

There can be complications. There can be difficult days. Some people require ongoing specialist support.

But a urostomy is not the end of ordinary life.

For many people, it is precisely what allows ordinary life to begin again.

And perhaps that is something we should talk about more.

Not simply what somebody has lost when their bladder no longer works.

But what can become possible when there is another way forward.

Because sometimes changing the way a body works isn't giving up on it.

Sometimes it's how you get your life back.

Oui. Together, we can.

A note on the below photo:

This is me, the day after having my bladder removed and a urostomy formed.

I was on quite the cocktail of pain medication, but the relief I felt following the surgery was immense.

I think this photograph captures something that can be difficult to explain about life-changing surgery. I had just undergone a major operation. I was surrounded by tubes, wires and hospital equipment in the ICU, and I was beginning life with a body that worked very differently from the one I had been born with.

And yet, I was relieved.

For me, having a urostomy wasn't simply about losing my bladder. It was about what I hoped I might finally gain: a new normal after being so terribly unwell for such a prolonged period of time.

That is why I wanted to include this photograph here. When we talk about stomas and urinary diversion, it is easy to focus entirely on what has changed or what has been lost.

Sometimes surgery can represent something else too: a way forward.

And yes — apparently I was giving it a thumbs-up less than 24 hours later. 💛

A note from Oui

Oui provides health information and awareness, not individual medical advice. Urostomy surgery, recovery and long-term stoma care differ between individuals. Anyone experiencing problems with a urostomy — including significant changes in stoma appearance or output, persistent skin problems, recurrent leakage, pain, fever or feeling unwell — should seek advice from their own stoma or healthcare team.

References & Further Reading

1. Urostomy Association. What is a urostomy? A particularly useful UK resource explaining urinary diversion, urostomy pouches and adapting to life after surgery. The Association notes that many people return to active lives following surgery and that some describe urinary diversion as restoring their quality of life. Urostomy Association — What is a urostomy?

2. Cambridge University Hospitals NHS Foundation Trust. Formation of an Ileal Conduit. Updated/approved May 2026. Current NHS patient information on ileal-conduit surgery, hosted through the Trust's urology service and linking to the British Association of Urological Surgeons information. CUH — Formation of an Ileal Conduit

3. Cambridge University Hospitals NHS Foundation Trust. Urostomy discharge information. Excellent for the practical sections of our article. It explains postoperative urostomy care and, importantly, confirms the slightly surprising fact we mention in the blog: because an ileal conduit is made from bowel, it continues to produce mucus, which can therefore appear in the urostomy pouch. CUH — Urostomy discharge information

4. Urostomy Association. Frequently asked questions. Covers stoma care, appliance changes, hydration and returning to everyday life. It also explains the important role of the specialist stoma nurse and the support available to people adjusting to urinary diversion. Urostomy Association — Frequently asked questions

5. Urostomy Association. You can handle this. 25 March 2026. A useful source for the article's sections about learning to manage the appliance, worrying about things going wrong and gradually developing confidence. The Association explicitly acknowledges that physical changes and the amount of new information involved after surgery can initially feel overwhelming. Urostomy Association — You can handle this.

6. Urostomy Association. Bathing, showering and swimming with a urostomy. 2026. Supports the everyday-life section. People can generally shower, bathe and swim with a urostomy, and urostomy appliances are designed to cope with water. It also explains the practical difference created by the continuous production of urine. Urostomy Association — Bathing, showering and swimming

7. Urostomy Association. Looking after a loved one with a urinary diversion. Although written partly for carers, this is a useful overview of recovery, emotional adjustment, stoma care, appliances and changes to everyday life. It explicitly recognises that adjusting to a urostomy may be challenging initially and that confidence can develop with time and support. Urostomy Association — Living with urinary diversion

Lived experience, body image and adjustment

8. Kang et al. Life Experience of Patients Living With Urostomy: A Meta-Synthesis of Qualitative Research. Psycho-Oncology. 2025. doi:10.1002/pon.70096. Rather than looking simply at surgical outcomes, the researchers synthesised qualitative studies examining what living with a urostomy is actually like. The review identifies physical, psychological, social and functional changes and specifically recognises the effect of urostomy on body image. Read the full peer-reviewed study.

Support after surgery

9. Urostomy Association. Support for patients and carers.The Urostomy Association is the UK's specialist charity for people living with or facing urinary diversion. It provides a helpline, information, one-to-one support from trained volunteers who themselves live with urinary diversions, online support groups, webinars and patient stories. Urostomy Association

10. NHS Service Directory. Urostomy Association.The NHS directory describes the Association's role as supporting people before and after urinary-diversion surgery, supporting carers through rehabilitation and helping improve quality of life following urinary diversion. It lists the service as UK-wide and self-referral. NHS — Urostomy Association service listing