Stoma care

Also called Colostomy, Ileostomy, Urostomy

Around 200,000 people in the UK live with a stoma. Managed well it is invisible; managed badly it takes over a life.

What it is

A stoma is an opening on the abdomen where bowel or ureter is brought to the surface, with output collected in a bag. Around 200,000 people in the UK have one, following bowel cancer, inflammatory bowel disease, diverticular disease or trauma.

Most people, given good support, return to work, sport, swimming and normal relationships. The gap between people who are well supported and people who are not is very wide, and it comes down to two things: a correctly fitting appliance, and access to a stoma nurse.

An ill-fitting bag leaks. Leaks damage the skin, skin damage makes the bag fit worse, and the person stops leaving the house. That cycle is the single commonest cause of misery with a stoma, and it is entirely preventable.

Signs you might notice

A healthy stoma is red or pink, moist, and slightly raised. It has no sensation, so it does not hurt to touch.

Warning signs: a stoma that turns dark purple or black, which means blood supply is compromised and is an emergency.

Skin around it that is red, broken or sore, which means the appliance does not fit.

No output for several hours with abdominal pain, swelling and vomiting: possible obstruction, and an emergency in an ileostomy.

A bulge around the stoma when standing or coughing, which is a parastomal hernia.

Very high watery output in an ileostomy, which causes dehydration and kidney problems quickly.

How it can affect day-to-day life

Body image and intimacy are the areas people most want to talk about and are least often asked about.

The practical burden is supplies: getting the right products, in the right quantity, delivered reliably.

Diet takes experimentation, particularly with an ileostomy, and blockage from poorly chewed high-fibre food is a common avoidable admission.

In care settings, staff frequently have no stoma training, and a bag applied incorrectly by somebody guessing causes exactly the leak cycle above.

Supporting someone well

Get the fit right. Measure the stoma regularly, especially in the first months when it shrinks, and cut the flange to size. This one thing prevents most problems.

Protect the skin. It should look like the skin elsewhere on the abdomen. Anything else means the appliance needs changing.

Recognise the emergencies: a dark stoma, no output with pain and vomiting, or high output with dehydration.

With an ileostomy, watch fluid and salt. High output causes dehydration and kidney injury faster than people expect.

Chew thoroughly and reintroduce high-fibre foods carefully.

In a service, get proper stoma training rather than improvising, and record output. Fiducia Together keeps stoma output and skin integrity in the clinical record, which is what makes a rising output visible before it becomes an admission.

Where to get help

A stoma care nurse is the key contact, and most people can self-refer back to theirs.

Colostomy UK run a free 24-hour helpline on 0800 328 4257.

A dark or black stoma, or obstruction symptoms, needs emergency assessment.