When you are told you are to have a stoma it can be a shocking experience, irrespective of the fact that it is the inevitable outcome for someone with inflammatory bowel disease or intractable incontinence. For the person with cancer or trauma, they have to deal with the shock of their diagnosis and also with having a stoma, be it temporary or permanent.

Stoma is a Greek word meaning mouth or opening. It is a surgically created opening from the abdomen to the bowel or urinary tract. It is used as a method of elimination for either bowel or bladder waste. It protrudes through the abdomen wall, has a moist, soft, fleshy feel and is pinkish-red in colour, similar to the inside of your mouth.

There are three basic types of stoma:

A colostomy is an opening into the large bowel (colon) and is usually sited on the lower left side of the abdomen. A transverse colostomy, which is sited above the waist, can be on the right or left side.

An ileostomy is an opening into the ileum (small intestine) and is usually sited on the right lower side of the abdomen.

This is an opening into the urinary tract and usually sited on the right lower side of the abdomen.

Sometimes the stoma will have to be sited differently because of scarring from previous surgery, stomas or skin problems. It can be temporary or permanent.

Undergoing stoma surgery will mean adjustments to your life, so good preoperative preparation will greatly enhance your recovery and rehabilitation. This may start as an outpatient or when you are admitted to hospital. It will also depend on your disease or condition, the type of surgery and stoma.

When you go to hospital (most major hospitals in Ireland carry out stoma surgery) you will meet the multidisciplinary team who will care for you. This team include doctors, ward nurses, stoma care nurse, physiotherapist, dietitian, social worker and a member of the pastoral care team.

On your work-up for surgery you will have several investigations such as blood-tests, urine tests, x-rays and an electrocardiogram (ECG), which traces the electrical impulses in your heart to ensure that it is working properly. Further investigations and tests may be needed to aid the management of your treatment plan.

These investigations may include:

• Ultrasound scan.
• CT scan.
• MRI scan.
• Barium follow-through/enema.

The stoma care nurse will discuss and explain your diagnosis, surgery, the type of stoma and its management. You will have the opportunity to ask questions and discuss your fears and anxieties.

Some of these feelings may include:

• Denial of your condition.
• Anger.
• Depression.
• Fear of problems with self image, relationships.
• Sexual problems.
• Fear of death.

It is very important that you explore these feelings and how to cope with them before your surgery. Reading relevant literature and booklets, and talking with a person who has a stoma is also very helpful. Your family or carer will also have the opportunity to meet with the stoma care nurse to increase their understanding of your condition, stoma and management.

The day before surgery you will have a bowel preparation to empty your bowel of faeces. This may mean that you must have a series of enemas or oral preparations, depending on the surgeon’s specific instructions. You will also meet the anaesthetist, who will explain about your anaesthetic and pain control following surgery.

The stoma care nurse will mark the site for your stoma. It is important that you express your opinion and or doubts, as this will help in siting your stoma in the best possible location so that you will enjoy optimum quality of life following surgery.

After surgery you can expect to feel drowsy and weak for the first few days. You will have some discomfort, which will be relieved with medication. You will be out of bed within the first 12-24 hours and discharged from hospital in 10 -14 days. As you will not be eating for the first few days you will have a drip (intravenous line) usually inserted in your arm, which will replace your fluid.

Other tubes you may find attached to your body include a nasogastric tube, which passes through your nose down to your stomach to keep it empty. This will ensure that you are not nauseated and that you do not vomit.

You will also have a urinary catheter (tube) into your bladder and sometimes a small drain at your operation site to aid healing. These tubes are there to make your recovery more comfortable and will be removed in a few days. The wound will be closed with either staples or stitches, which will be removed within eight to 10 days.

Your stoma is covered in the operating theatre with a clear plastic drainable appliance (bag). This is to allow the colour and output of your stoma to be observed. Initially your stoma will be a little swollen and red, with the stitches that hold it in place visible. These stitches will dissolve within about six weeks and the stoma will reduce in size.

There may be a large volume of liquid output initially but this will settle to a porridge-like consistency (if you have an ileostomy) or to formed stool (if you have a colostomy).

For the first few days the nursing staff and stoma care nurse will look after your stoma. The stoma bag is usually attached to the skin by a toffee-like adhesive called a flange. This protects the skin around the stoma and keeps the bag in place.

When you are feeling better you will be shown how to look after it yourself or a family member/carer is welcome to join in these sessions.

The practical management of your stoma should be kept as simple as possible.

Always have your requirements ready before you start, such as:

• A new appliance cut to fit.
• Warm water.
• Soft tissues or gauze wipes.
• Deodorant spray.
• Disposable bag (to dispose of old appliance).

Changing your appliance:

• Empty the appliance (if drainable).
• Wash your hands.
• Remove the old appliance carefully from the top down and avoid dragging the skin.
• Wipe excess waste with soft tissue.
• Wash the stoma and surrounding skin, gently removing all waste and flange.
• Use unperfumed soap if needed and rinse skin well to avoid dryness.
• Gently dry the skin with wipes.
• Check that your stoma has not change size with the measuring guide.
• Place prepared appliance over stoma.
• Spend a few minutes moulding flange to skin.
• Rest for a few minutes to allow for adhesion to skin.
• Do not forget to attach the clip (drainable bag) or close the tap (urostomy bag).
• Empty contents of closed bag in toilet.
• Place the empty old appliance in the disposal bag and discard in bin.
• Wash your hands.

The type of appliance you will wear on discharge will depend on the type of stoma:

• Ileostomy: drainable with clip.
• Colostomy: closed appliance.
• Urostomy: appliance with tap.

The stoma can be a one-piece appliance (flange and bag are moulded together) or a two-piece appliance (flange and bag are separate pieces that can be fitted together). Modern appliances with improved adhesives are now available in soft opaque covers and in various sizes.

All closed appliances and some drainable ones have activated charcoal filters which allows flatus to be released and absorb the odour, making them more discreet and comfortable. There are also a wide variety of accessories available if needed for extra comfort and security. The stoma care nurse will give you help and advise you when choosing what is suitable for you to wear.

All appliances and accessories are available from your chemist or by direct delivery service. The cost is covered by both the medical card and the drugs repayment scheme. On your discharge from hospital you will be given a prescription for your appliances and some supplies for the interim period. Follow-up care will be arranged in the community or as an outpatient.

There are several issues that many people express concern about during their recovery and rehabilitation. Most people with a stoma worry about social and public situations.

• They frequently worry about issues such as:
• What if they have an accident?
• Will the bag leak, or fall off?
• Will the stoma make embarrassing noises?
• Will it smell?
• Will others notice it underneath my clothes?

There is no doubt that accidents do happen. In many areas of your life you take precautions to ensure that they don’t, so why not do the same with your stoma?

It is very easy to focus on the worst possible scenario, so instead of worrying and avoiding situations why not think about how you would cope?

Be prepared. Make a coping plan for yourself. Think about:

• How you would feel.
• What you would say.
• What you would do.

It is more than likely that you will never need to put your coping plan into action but it does give you the confidence to cope with any situation if you feel prepared.

Make your first outing somewhere local, maybe to family or friends. If you wish, tell them in advance about your stoma so that they will understand if you make a quick exit. It will help to build your confidence before embarking on a bigger social outing.

Leakage of the appliance can happen occasionally especially in the beginning when you are less experienced. Leakage can cause skin soreness and excoriation, so early detection and correction is advisable.

Some of the reasons for leakage are as follows:

• Overfull appliance (empty more frequently).
• Appliance left on too long (change appliance sooner).
• Poor changing technique (re-read your information on changing your appliance).
• Poor vision (wear your glasses or use a mirror).
• Incorrectly-fitting appliance (check that the size and shape of stoma and correct it).

Inspection of stoma for causes of leakage:

• Has your stoma shrunk or enlarged? — Measure with measure guide or check with your stoma nurse.
• Have you lost or gained weight? — You may need to reduce or increase the size of flange or change the type of appliance to either a one or two piece, convex flange, or a belt. Discuss this with your stoma care nurse.
• Have you developed skin folds or creases? — Use paste or cohesive seal or consult your stoma nurse.
• Have you developed sore skin? — Establish whether it is caused by leakage or allergic reaction to adhesive. Use cohesive seals, change the type of appliance you are using and consult your stoma nurse.
• Have you developed a parastomal hernia — Change to a soft flexible flange. See your doctor or stoma care nurse for assessment.

It is always advisable to carry a spare appliance, some tissues and disposable bag with you as a precaution. If in doubt, consult with your stoma nurse.

Certain food will cause more flatus than others so it is important to experiment. It is important to have a good balanced diet, so do not eliminate food from your diet until you have tried at less three times. You may be able to reintroduce that particular food at a later date.

Hint to reduce flatus:

• Eat small regular meals.
• Do not skip meals.
• Eat with your mouth closed.
• Do not gulp your food, chew well wait until you swallow one mouthful before taking another.
• Avoid drinking for about 45 minutes before or after meals.
• Experiment with foods.
• Try live yogurt, buttermilk, cranberry juice, fennel tea, peppermint oil or pineapple capsules.

Odour is always of great concern to people. Most modern appliances are now odour proof provided they are fitted properly. You should only be aware of odour when emptying or changing your appliance.

If you think the odour is excessive, check what you are eating as some food do cause more odour:

Hint to reduce odour: Try taking peppermint oil, yougurt or buttermilk.

In the bathroom use:

• Deodorant sprays.
• Scented candles.
• Strike a match.
• Essentials oils such as lavender and eucalyptus oil.
• Burn joss or incense sticks.

In appliance use:

• Day drops.
• Biotrol C 60 capsules.
• Soluble aspirin.
• Vanilla essences.

In urostomy use:

• Vinegar in appliance.

Foods that may cause loose stools:

• Apple juice.
• Baked beans.
• Spinach.
• Prune juice.
• Highly spice foods.
• Beer.
• Raw fruits.

Foods to help reduce loose stools:

• 10-12 marshmallows.
• Very ripe banana.
• Live yogurt.
• Apple sauce.
• Potatoes without skins.

People with colostomies may sometimes suffer with constipation, which may be simply rectified by:

• Increase fluids (water).
• Fresh orange juice or prune juice.
• A mild laxative, perhaps Duphalac.

If constipation continues contact your stoma care nurse or doctor.

Pancaking occurs when the stool sits on the stoma and fails to drop down into the appliance. It can sometime be a problem for people with colostomies, causing leakage and sore skin.

To avoid pancaking, before applying your appliance:

• Place filter cover on filter.
• Place a wet tissue into the appliance.
• Grease inside of appliance with oil (olive oil or baby oil).
• Increase your fluids.

If problem persist try one sachet of Fybogel daily or contact your stoma care nurse.

Most people return to work within two to three months following surgery depending on their general health. Do not be in a rush as you can feel tired for several months. If you job involves heavy lifting it is inadvisable to return to work until the muscle are completely healed.

Discuss with your employer about initially taking up lighter duties until you feel more able. Return to work part-time initially and gradually increase.

Returning to sport depends on your general health and fitness. When you return to sport develop your fits gradually. It is possible to participate in most sports. If you are participating in very energetic sports be careful to replace your fluids, especially if you have an ileostomy or ureostomy.

Contact sports:

• It is advisable to wear a stoma guard to protect your stoma during contact sports.

Swimming:

• Get used to wearing your swimming costume at home before going to the swimming pool or beach.
• A patterned swimming costume and sarong can conceal your appliance.
• Wearing a smaller appliance can be more discreet.

People with stoma can feel anxious when embarking on their first trip away from home or going on holidays. It is important to plan in advance ensuring you have suitable accommodation and travel arrangements. If you feel unsure do seek advice from your stoma care nurse, doctor or fellow ostomist.

Travelling by air:

• Drink plenty
• Arrange your seat in advance near the toilets to facilitate emptying your appliance. Use the toilets before meals as the gangway will be blocked for a long time with meal trolleys and after meals there is usually a queue.
• For people with colostomies (colostomists) a change in air pressures in the cabin can cause more flatus, so avoid fizzy drinks.
• Bring double supplies split between your hand and main luggage.

In hot climate:

• You may need to change your appliance more frequently.
• Dehydration can be a problem particularly for those with ileostomies (ileostomists). It is recommended that you drink extra fluids (water).
• Bring rehydration fluids such as Dioralyte in case of severe dehydration.
• Do not drink too much alcohol as it accelerates dehydration.
• Bring anti-diarrhoea medication, especially if you are eating unfamiliar foods.
• Store supplies in a cool place such as a wardrobe.
• It you are worried you might have a leak at night bring a light plastic mattress cover or a plastic bag.
• Have insurance cover.

Driving is usually allowed within two months but you should check with your surgeon. Seat belts should sit across your hip bone and pelvis not across your stoma and abdomen. An extension bracket can be fitted to lower the angle, or for reel belts use a clip device or hold with a peg to stop it dragging across your stoma.

Some people may experience problems both physical and or psychological regarding sexual activity following stoma surgery. You may feel a sense of loneliness and fear of being rejected. This problem is not uncommon but it is important to discuss it with your partner and or stoma care nurse or surgeon.

Many women have successfully conceived and had normal deliveries with stomas.

Before contemplating pregnancy check with your doctor or surgeon that you are fit to do so. If you are having difficulties in conceiving do not presume it is because you have a stoma. Seek advice and discuss any possible difficulties with a gynaecologist.

Pregnancy will not damage your stoma, but as your abdomen enlarges your stoma will change shape and may become flatter and more oval shaped. You will need to measure your stoma frequently and adjust your size accordingly. You may also need to change your type of appliance. Following delivery your stoma should return to it original size.

Written by Grace McEvoy, Stoma care nurse, St Vincent’s University Hospital, Dublin

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