Ostomy care at home

Who teaches me, and what should I expect at first?

A stoma nurse teaches you to empty and change the pouch, look after the skin and spot problems, usually before you leave hospital. The first week or two at home are best treated as an extension of the hospital stay: rest, expect to tire easily, and ask for help early.

• A new stoma is swollen and usually shrinks over about 2 to 3 months, so the size of the pouch opening you need can change. Ask your nurse to check the fit as it settles
• Many people tire easily in the first weeks. Gradually, stamina and strength improve
• It is normal to worry about the change to your body. Your stoma nurse can help with body image, relationships and sex

What a stoma is, the types of stoma and why one is needed

How do I empty and change the pouch?

Empty the pouch when it is between one-third and half full, so it stays flat and is less likely to leak. Change the skin barrier and pouch on the schedule your nurse gives you, and straight away if it itches, burns or leaks. Choose a time when the stoma is quiet, such as before you eat in the morning.

To empty a drainable pouch:

• Put a little toilet paper in the toilet to stop splashes, and sit well back on the seat
• Hold the bottom of the pouch up, then roll the tail over the toilet and let it empty
• Wipe the inside and outside of the tail with toilet paper and close it

To change the pouch:

• Wash your hands and have everything ready, including a measuring guide, scissors and a bag for the old pouch
• Remove the pouch gently, pushing the skin away from the seal rather than pulling the seal off the skin
• Wash the stoma and the skin around it with warm water, or mild unperfumed soap, and pat dry. A little bleeding when you clean the stoma is normal
• Look at the stoma and the skin. Colour, size and skin changes are easiest to see now
• Measure the stoma and cut the opening in the new barrier so that it sits close to the stoma without touching it. Use paste or powder only if your nurse recommended it
• Remove the backing, centre the barrier over the stoma and press it on firmly. Hold your hand over it for about 30 seconds so the warmth helps it stick, then close the pouch

Many pouching systems are worn for 3 to 7 days, and some are changed daily. Follow your nurse's schedule, and change sooner if you are sweating more, have oily skin or the output is more watery than usual. Never push anything into the stoma unless your doctor tells you to.

How do I look after the skin around the stoma?

The skin around a stoma should look like the rest of your tummy. Wash it with warm water, dry it well, avoid oily and alcohol-based products, and treat redness or soreness early, because stool on the skin causes damage quickly. A well-fitting barrier is the best protection.

• Avoid skin products that contain alcohol, which dries the skin, and oils, which stop the barrier from sticking
• If hair stops the barrier sticking, trim it with scissors or an electric shaver. Do not use a straight-edge razor, and protect the stoma while you do it
• Check the skin and stoma every time you change the pouch. Red or wet skin often means the seal is not sitting well
• Skin can become sensitive to adhesive, paste, tape or a pouch material, even after months or years of use. Tell your nurse if a patch of skin is sore, itchy or has a rash
• Your nurse may suggest a protective powder or other skin product. Use only what they recommend

What should I do about leaks?

Change a leaking pouch straight away, because stool on the skin makes it sore quickly. Repeated leaks usually have a fixable cause, such as an opening cut too large, creases in the skin, a stoma that sits flat, or a pouch worn for too long. Your stoma nurse can refit the pouch or suggest a different barrier shape.

• The opening in the barrier should match the size of the stoma. If it is too large, stool touches the skin and loosens the seal
• If the skin around the stoma creases when you sit or stand, the barrier can pucker and let stool underneath. A differently shaped barrier may help, and your nurse can advise
• If the stoma sits level with the skin, output can travel under the seal. Your nurse may suggest a barrier shaped to press gently around it
• If a barrier is worn too long, the adhesive wears away. Shortening wear time by a day or two may help
• Carry a spare pouch, barrier and wipes when you are out
• If you cannot find the cause, ask your stoma nurse to review the fit

What should I eat and drink?

A low-fibre diet is usually advised for the first weeks after surgery. After that most people go back to their usual foods, adding new ones gradually. Eat regularly, chew food well and drink plenty of fluid to help prevent blockage and dehydration.

• Eat regular meals without long gaps and chew food thoroughly. This helps stop an ileostomy from blocking
• Add high-fibre foods back gradually, and avoid eating them on an empty stomach, as they can cause a blockage
• Some foods, such as cucumber, cabbage, broccoli, onions, fish, eggs and beans, cause more gas and odour than others. Fizzy drinks and chewing gum also add gas. A food diary helps you see what suits you
• Drink plenty of fluids. If output is high, an oral rehydration drink replaces the water and salts you lose
• Signs of dehydration include a dry mouth, passing urine less often, tiredness, feeling lightheaded or weak
• Tablets made to dissolve slowly may not work as well with an ileostomy. Ask your doctor about alternatives, and do not stop a prescribed medicine on your own

Your doctor or stoma nurse can refer you to a dietitian if you have ongoing digestive problems or are unsure what to eat.

Can I shower, exercise, work and have a normal life?

Yes. Once you have healed, most people return to work, sport and their usual routines. You can shower or bathe with the pouch on or off, because water does not enter the stoma. Avoid strenuous activity and heavy lifting for as long as your surgeon advises, usually several weeks to a few months, while the tummy muscles heal.

• Bathing: soap and water will not harm the stoma, and you can shower or bath with or without the pouch
• Clothes: the pouch sits under your clothing, and most people wear their usual clothes
• Lifting and exercise: gentle walking is fine early on. Avoid heavy lifting and strenuous exercise for the period your surgeon advises, because strain raises the chance of a hernia beside the stoma
• Sport: after recovery you can usually return to most activities, including swimming. Contact sports and heavy lifting could injure the stoma, so ask your doctor or nurse whether a stoma guard or belt is advisable
• Work: ask your surgeon when you can return. If your job involves heavy lifting, speak to your employer and your surgeon about a gradual return
• Driving: wait until your surgeon says it is safe
• Intimacy: most people return to their usual sex life once they feel ready. Talk to your nurse about any worries

How do I travel with a stoma?

Plan ahead. Pack more supplies than you expect to use, carry them in your hand luggage, and keep them out of heat and direct sun. Drink plenty of fluid, because a stomach upset can quickly lead to dehydration with a stoma. Ask your surgeon about flying if you have had surgery recently.

• Take more supplies than you expect to need, and check that you can reach a supplier where you are going
• Keep supplies in hand luggage, and tell the airline in advance if you need extra allowance
• If you use cut-to-fit barriers, cut them before you fly, as scissors may not be allowed
• Heat and humidity can affect how the barrier sticks, and sweat under it can irritate the skin. A cool bag helps store supplies
• Avoid gassy foods in the days before a flight. A pouch with an extra filter can reduce ballooning
• Travellers' diarrhoea raises fluid loss with a stoma. Get advice early if you cannot keep fluids down or feel dehydrated
• A short letter from your doctor or a travel certificate can help if you need to use a toilet urgently. Declare your stoma to your travel insurer

How do I manage supplies?

Your stoma nurse gets you started with the pouches and accessories you need, and after that you order your own. Ask which products suit you, how many you are likely to use each month, where to order them and what they will cost. Keep a small kit at home and when you go out.

• Ask your nurse to write down the type, size and code of what you use so reordering is straightforward
• Re-measure the stoma at each change in the first months, and whenever your weight changes
• Store supplies somewhere cool and out of direct sun

When should I call for help?

Contact your stoma nurse or the clinic early for repeated leaks, sore or raw skin, a stoma that changes shape, or signs of dehydration. Get urgent help the same day if the stoma has not worked for 12 hours, or for severe cramps, nausea or vomiting, lots of blood, a very high temperature, or a stoma that turns purple, black or white.

Call your stoma nurse or the clinic soon if:

• The stoma looks very swollen, is pulling in below the skin, or sticks out further than usual
• The stoma bleeds more than normal
• The pouch leaks often, no longer fits, or needs changing every day or two
• The skin around the stoma is red, raw, painful, has a rash, bumps, pus or sores
• Discharge from the stoma smells bad
• You have signs of dehydration, or diarrhoea or very watery output that does not settle
• Output slows, with cramps, swelling around the stoma or nausea

Get help the same day, and call 995 if you are very unwell, if:

• The stoma has not worked for more than 12 hours, or for 4 to 6 hours with cramps and nausea
• You have severe cramps with nausea and vomiting
• There is a lot of blood from inside the stoma or in the pouch, or bleeding at the edge of the stoma that does not stop with gentle pressure
• The stoma turns purple, black or white, or its size, shape or colour changes suddenly
• Your temperature is very high, or you feel hot, cold or shivery

The clinic offers ostomy support after surgery. Call +65 6738 6020. Outside clinic hours, or in an emergency, go to the nearest emergency department or call 995.

What if my stoma is temporary and will be reversed?

A temporary stoma can often be closed in a later operation, once you have recovered and the join in the bowel has been checked and has healed. This is at least six weeks after the stoma was made, and often several months. Until then you carry on with normal stoma care. After reversal, loose, frequent stools are common at first.

• Reversal rejoins the bowel and closes the opening, so stool passes from the back passage again and a bag is no longer needed
• It is not always possible. Your surgeon tells you whether it is an option for you
• Before reversal your surgeon may arrange tests to check that the join has healed
• Early after reversal it is common to have loose stools, go more often, feel urgency, have difficulty telling wind from stool, and have sore skin around the back passage
• These problems usually improve over the first year. Barrier cream, diet changes, pelvic floor exercises and medicines can help, and bowel habit may not return exactly to how it was before
• A hernia can develop at the site of the old stoma, so protect the area when you cough and avoid heavy lifting as advised

Read more about temporary and permanent stomas