Living with colostomy living

Overview

A colostomy is an opening on the belly (called a stoma) that lets stool leave the body into a pouch worn on the skin. It is made during surgery when part of the large bowel (colon) is removed or needs time to heal. You cannot feel the stoma, and it has no nerve endings, so it is not painful.

Yes. Millions of people around the world live with a colostomy. It is a common operation, especially after bowel cancer treatment.

A colostomy can affect anyone who needs surgery on the colon. This includes people with bowel cancer, inflammatory bowel disease (like Crohn’s disease or ulcerative colitis), diverticulitis, or injuries to the bowel. It can happen in children, adults, and older people.

Symptoms

Common symptoms

• A stoma that is red or pink and moist — this is normal.
• Stool (poo) passing into the pouch at different times of day.
• Gurgling sounds from the stoma — this is normal.
• Some gas and odour from the pouch.
• Mild skin irritation around the stoma if the pouch leaks or rubs.

Symptoms in children

• Children may have the same stoma appearance as adults.
• The stoma may change size as the child grows.
• Some children may need more frequent pouch changes.
• It is normal for children to have questions or worries about their stoma.

Symptoms in older adults

• Older adults may have drier skin or less fatty tissue around the stoma.
• Skin around the stoma may be more fragile, so gentle care is needed.
• Changes in eyesight or hand strength may make pouch changes harder at first.
• Constipation or diarrhoea can happen more easily in older adults.

Causes

Main causes

• Bowel cancer that requires removal of part of the colon.
• Inflammatory bowel disease, such as Crohn’s disease or ulcerative colitis.
• Diverticulitis (infection of small pouches in the bowel).
• Injury or trauma to the abdomen or bowel.
• A blockage or tear in the bowel that needs surgery.
• Birth defects affecting the bowel (in children).

Risk factors

• Having one of the conditions above.
• Previous radiation therapy to the pelvis or abdomen.
• Family history of bowel cancer.
• A diet low in fibre and high in processed foods (for bowel disease).
• Smoking — it increases the risk of bowel problems and complications after surgery.

When to see a doctor

See a doctor urgently if:

• See a doctor the same day if the stoma looks very swollen, painful, or bleeds.
• If there is no stool from the stoma for more than 8 hours with belly pain or vomiting, seek urgent medical help.
• If you have a fever, chills, or the skin around the stoma becomes infected, see a doctor urgently.

Book a routine appointment if:

• See your doctor or stoma nurse for regular check-ups, usually every few months.
• Ask for a referral to a dietitian if you have trouble eating or weight changes.
• If the pouch leaks often, ask to be measured for a better-fitting pouch.
• If you notice a bulge near the stoma, tell your doctor — this may be a hernia.

Diagnosis

A colostomy is not a disease — it is the result of surgery. The decision to create a colostomy is made after your doctor finds a problem in the bowel. Before surgery, you will have tests to see exactly where the problem is.

Tests that may be done

• Colonoscopy — a thin tube with a camera checks the inside of your colon.
• CT scan or MRI scan — these take detailed pictures of your abdomen.
• Biopsy — a small piece of tissue is taken to check for cancer or other disease.
• Blood tests to check your general health and anaemia.
• Stool tests to look for blood or infection.

What to expect at your appointment

A surgeon will talk to you about why you need a stoma and where it will be placed. A stoma nurse will mark the best spot on your belly so the pouch fits well. After the operation, you will learn how to change the pouch and take care of your skin. This usually happens in hospital before you go home.

Treatment

The colostomy itself is not treated — it is a way of managing waste after bowel surgery. The main goal is to help you live comfortably with your stoma. This includes learning to use pouches, protect your skin, and adjust your diet.

Self-care at home

• Empty the pouch when it is about a third to half full, usually 4–6 times a day.
• Change the pouch every 1–3 days, or when it leaks, to protect your skin.
• Clean the skin around the stoma with warm water and dry it gently. Avoid soap that leaves oils.
• Cut the pouch opening to the exact size of your stoma to prevent leaks.
• Use skin barrier products, like wipes or powder, if your skin gets sore.
• Drink enough fluids to keep stool soft and avoid constipation.
• Eat slowly and chew well to reduce gas and blockages.

Medical treatments

Your doctor may prescribe medicines to help manage your stoma output. For example, medicines can make stool firmer if you have frequent loose stools, or laxatives if you become constipated. These are always chosen specifically for you by your healthcare team. The stoma nurse can also give you creams, powders, or special appliances for skin problems.

When is surgery considered?

In many cases, the colostomy is temporary and can be closed with another operation after the bowel has healed. Sometime this is done after a few months. If the colostomy is permanent, you may still have other surgeries later, like hernia repair, if a bulge develops near the stoma.

Living with this condition

Living with a colostomy takes some getting used to, but you will soon learn a routine. Most people are able to shower, dress, and sleep normally with the pouch on. You can wear your normal clothes, though you may prefer loose waistbands. You can go swimming and do most sports. Many people keep a spare pouch with them in a small bag, just in case.

Lifestyle tips

• You can travel, fly, and go on holiday — just carry extra supplies and drink bottled water when away.
• You can be physically active. Avoid heavy lifting until your doctor says it is safe.
• You can still have sex and intimacy. Talk to your partner and your stoma nurse if you have concerns.
• If you feel self-conscious, try wearing a pouch cover or using smaller pouches.
• You can go back to work. Many people do not need to mention their colostomy at all.
• It is safe to have a shower or bath with your pouch on or off. The stoma does not feel water.
• You can use public toilets — most have a bin for pouch disposal, but you can also carry a disposable bag.
• Do not smoke. Smoking increases the risk of hernia and stoma problems.

Diet and exercise

You can eat almost any food, but you may need to adjust. Foods that cause gas include beans, onions, fizzy drinks, and beer; try them in small amounts. High-fibre foods like nuts, sweetcorn, and raw vegetables can cause blockages — chew well. Drinking plenty of water (6–8 glasses a day) helps keep stool soft. Exercise, like walking, swimming, or cycling, is good for you, but wait 6–8 weeks after surgery before doing heavy lifting or sit-ups.

Mental health and emotional wellbeing

It is normal to feel sad, anxious, or ashamed at first. Many people grieve the loss of normal bowel function. These feelings usually improve with time, but if they last or affect your daily life, please talk to your doctor or a mental health professional. You are not alone. Support groups can help you hear from others who have walked this path. If you ever have thoughts of self-harm or that life is not worth living, reach out for crisis support immediately — call your local emergency number or a crisis helpline.

Prevention

A colostomy itself is not a disease, so it cannot be 'prevented' directly. You can lower your risk of the diseases that lead to colostomy, such as bowel cancer. This means eating a high-fibre diet, staying active, not smoking, limiting alcohol, and going for cancer screening when offered. If you already have a colostomy, the best 'prevention' is good stoma care to prevent skin problems, blockages, and hernias.

Vaccines

There is no vaccine that prevents the need for a colostomy. However, keeping up to date with general vaccines (like the flu and COVID-19 vaccines) is important because people recovering from surgery have weaker immunity. Always ask your doctor about which vaccines are right for you.

Screening programmes

Bowel cancer screening can find problems early, before they become serious. Many countries offer home stool tests (like the FIT test) for adults over a certain age. If you have a family history of bowel cancer, your doctor may recommend starting screening earlier. Regular check-ups after your surgery are also a type of screening.

Complications

If left untreated

• Skin breakdown around the stoma due to constant moisture or rubbing.
• Blockage of the stoma if food is not chewed well or a hernia twists the bowel.
• Parastomal hernia — a bulge near the stoma caused by tissue pushing through weakened muscles.
• Stoma prolapse — the stoma becomes longer than normal.
• Infection of the skin or the incision site.
• Dehydration and electrolyte imbalances from too much watery stool.

Long-term outlook

With good care, most people with a colostomy live full, active, enjoyable lives. The first few weeks can be challenging, but you will gain confidence and skill. The stoma may shrink in size over time, and you will learn exactly what works for you. You can still work, travel, love, and laugh. Many people tell us they eventually think of their colostomy as just another part of their body, not a limitation.

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