Stoma living day to day

Overview

A stoma is a small opening on the surface of your belly that is made during surgery. It allows waste (stool or urine) to leave your body through a small pouch that sticks to your skin. The stoma itself is the pink, moist part you see on your abdomen; it has no nerve endings, so it does not hurt.

Yes, many thousands of people live with a stoma. It is a common procedure for certain bowel and bladder conditions, and with good care, people manage very well.

A stoma can be needed at any age. It may be temporary or permanent. Common reasons include surgery for cancer, inflammatory bowel disease (like Crohn's disease or ulcerative colitis), diverticulitis, or an injury to the abdomen.

Symptoms

Common symptoms

• The stoma is pink or red and moist, like the inside of your mouth.
• A small amount of mucus or bleeding from the surface of the stoma is normal, especially when cleaning it.
• You may feel gas or see your stoma 'wiggle' – this is normal bowel movement.
• The skin around the stoma should look like the rest of your belly skin: healthy, not sore or broken.

Symptoms in children

• Children with a stoma can play, learn, and grow normally. The care is similar to adults, but the pouch may need to be changed more often.
• Teens may have body image concerns and need extra emotional support.
• A child's stoma may change size as they grow, so the pouch template should be checked regularly.

Symptoms in older adults

• Older adults may have more delicate skin around the stoma, so extra care with skin protection is needed.
• Arthritis or poor eyesight can make pouch changes harder, but special tools and help can make it easier.
• It may take longer to learn stoma care, but with practice and support, independence is very possible.

Causes

Main causes

• Surgery for colorectal, bladder, or pelvic cancers.
• Inflammatory bowel diseases like Crohn's disease or ulcerative colitis.
• Severe diverticulitis or bowel perforation.
• Trauma or injury to the abdomen.
• Birth defects affecting the bowel or bladder (in children).

Risk factors

• Long-term inflammation of the bowel.
• A family or personal history of bowel or bladder cancer.
• Radiation therapy to the pelvic area.
• Certain emergency surgeries where part of the bowel must be removed.

When to see a doctor

See a doctor urgently if:

• Any of the emergency symptoms listed above: severe pain, no output, sudden color change, or heavy bleeding.
• If your stoma stops working and you feel bloated or sick.
• If you develop a high fever or the skin around your stoma becomes very painful.

Book a routine appointment if:

• If you notice skin irritation that does not improve after 3 to 5 days of careful cleaning and barrier use.
• If the stoma size changes, or the pouch leaks more often than usual.
• If you have questions about diet, activity, or pouch choice.
• At least once a year to have your stoma and pouch fit checked by a stoma nurse.

Diagnosis

A stoma is not a disease but a result of surgery. However, your healthcare team will regularly check the stoma and surrounding skin to make sure it is healing well and that your pouch fits correctly. They will also ask about your output (stool or urine), diet, and any symptoms you may have.

Tests that may be done

• Visual inspection of the stoma and skin.
• Palpation (gently feeling the belly) to check for hernias or lumps.
• Sometimes, a small sample of mucus or tissue is taken for testing if there are concerns.
• If there is a suspicion of blockage or a leak inside the belly, imaging like a CT scan or contrast X-ray may be used.

What to expect at your appointment

During a stoma check-up, you will be asked to remove the pouch so the nurse can see the stoma clearly. They will measure it, check the skin, and re-fit the pouch. It is a simple, quick, and painless process. You can ask any questions during this appointment.

Treatment

There is no 'cure' for a stoma – it is a new way for your body to work. Treatment focuses on good stoma care, treating any underlying condition, and managing or preventing complications. Your specialist stoma nurse is your main partner in this.

Self-care at home

• Empty your pouch when it is about one-third to half full to prevent leaks and skin irritation.
• Clean the skin with warm water only; pat dry with a soft cloth or gauze.
• Use a barrier wipe or cream around the stoma to protect your skin.
• Change the pouch every 1 to 3 days, or as recommended by your nurse.
• Cut the opening of the pouch to fit the size of your stoma exactly – you can use a measuring guide.
• Dispose of used pouches properly using a disposal bag or the system provided by your local health service.

Medical treatments

If you have an underlying condition (for example, inflammatory bowel disease or cancer), your doctor will continue to treat that condition. This may include medications to reduce inflammation, chemotherapy, or other therapies – depending on the original reason for your stoma. For stoma-related skin problems, your doctor or stoma nurse may recommend skin protection products, antifungal powders, or other treatments. Always ask your healthcare team before using any cream or product on your skin near the stoma.

When is surgery considered?

Sometimes another operation is needed if complications occur, such as a parastomal hernia (a bulge near the stoma) that is painful, a blockage that does not resolve, or a stoma that keeps prolapsing (sticking out too far). These are usually planned procedures, not emergencies, and can often be done with minimally invasive surgery.

Living with this condition

At first, caring for a stoma can feel strange and time-consuming, but it becomes a simple routine within a few weeks. You will learn to empty and change the pouch confidently. Most people get back to their usual daily activities – work, family, hobbies – after a short recovery. It helps to carry a small emergency kit with a spare pouch, wipes, and a plastic bag when you go out.

Lifestyle tips

• Swimming: you can swim with a stoma – wear the pouch and use a waterproof barrier or a stoma belt if you feel more secure.
• Exercise: light to moderate exercise is good for you; avoid very heavy lifting in the first few months to reduce the risk of a hernia.
• Travel: it is fine to travel, but carry a good supply of pouches and mention your stoma to security if you have patches or medication.
• Clothing: most clothes – including fitted styles – can be worn without the pouch showing.
• Sex and relationships: intimacy is still possible. Talking openly with your partner can help. Many people feel nervous at first, but you can have a fulfilling sex life.

Diet and exercise

There are no strict rules, but it helps to eat regular meals, chew food well, and introduce new foods one at a time. Foods like beans, cabbage, and carbonated drinks can increase gas – you can choose to avoid these if they bother you. Drink plenty of water. For an ileostomy, some foods like nuts, sweetcorn, and raw vegetables can cause blockages – your stoma nurse can give you specific advice. Gentle exercise like walking, swimming, and cycling is excellent for strength and mood.

Mental health and emotional wellbeing

It is completely normal to feel sad, angry, or anxious after stoma surgery. Your body has changed, and it may take time to feel comfortable again. If these feelings last or get in the way of daily life, please talk to your doctor or a counsellor. You are not alone – support groups and online communities can be very helpful.

Prevention

Having a stoma is a treatment, not a disease, so it cannot be 'prevented'. However, you can prevent many stoma-related complications by taking good care of your skin, wearing the right pouch, avoiding heavy lifting at first, and keeping up to date with regular check-ups.

Vaccines

There are no specific vaccines for a stoma, but it is important to keep up with routine vaccines like flu and pneumonia, especially if you have a long-term health condition. Ask your doctor which vaccines are right for you.

Screening programmes

If you had a stoma because of cancer, you will still need regular check-ups for that condition. This may include colonoscopy (through your stoma or the other opening), blood tests, or scans. Always follow the surveillance plan your specialist gives you.

Complications

If left untreated

• Untreated skin irritation can lead to open sores and infection.
• A blocked stoma (no output, severe pain, vomiting) can become a medical emergency if not treated quickly.
• An untreated parastomal hernia may grow, become painful, or rarely become strangulated (cutting off blood supply).
• A stoma that prolapses (sticks out too far) may get injured or be difficult to manage.

Long-term outlook

The outlook is very positive. Most people with a stoma live long, healthy, and full lives. With good support and self-care, you will learn to manage your stoma confidently. Many people return to work, travel, sports, and enjoy all the things they did before. You are not defined by your stoma – it is simply a part of your life, and you can adapt and thrive.

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