Colostomy - Living with a colostomy

Although it can be difficult to adjust at first, having a colostomy does not mean you cannot have a full and active life.

You may find the following information useful if you have a colostomy, or are due to have one in the near future.

Colostomy equipment

After a colostomy is formed, the opening in your abdomen (known as the stoma) will produce digestive waste in the form of faeces. The consistency of your faeces will depend which part of your colon is diverted, as well as your diet and fluid intake.

A colostomy pouch will usually be required to collect your faeces. These pouches often need to be removed and replaced when full (usually one to three times a day), although drainable pouches that only need to be replaced every one or two days may be used if you have particularly loose faeces.

There is a wide range of colostomy appliances available, including:

• a one-piece pouch – the bag and flange (part that sticks to your skin) are joined together. The appliance is removed when full and disposed of
• a two-piece pouch – the bag and flange are separate but can be connected; the flange can be left on your skin for several days and the bag removed and disposed of several times a day

If you produce faeces in a regular and predictable pattern, you may not always need to wear a colostomy bag. However, as occasional leakages can occur, it is recommended that you wear a small stoma cap. 

A specialist stoma nurse, who will usually see you before and after the colostomy is formed, will help you choose the most suitable appliance for you.

To help reduce skin irritation, colostomy appliances are made from hypoallergenic (non-allergic) material, and contain special filters that ensure the appliance does not release any unpleasant odours.

There are also additional products that can make living with a colostomy more convenient, including:

• support belts and girdles
• deodorisers that can be inserted into your appliance 
• protective skin wipes
• adhesive remover sprays
• protective stoma rings
• specially designed underwear and swimwear

Your stoma care nurse will be able to advise you on the most appropriate equipment to manage your colostomy successfully.

Ordering and paying for appliances

You will be given an initial supply of colostomy appliances before you leave hospital, as well as your prescription information. You should let your GP know your prescription information so they can make a note of it in your medical records and issue prescriptions in the future.

Your prescription can either be taken to the chemist or sent to a specialist supplier who will deliver the appliances. There's no need to stockpile supplies, but it's recommended that you order more appliances while you still have plenty left so you don't run out.

You will not have to pay prescription charges for permanent colostomy equipment. However, you will have to pay prescription charges for a temporary colostomy unless you are over 60 years old. Read more about prescription charges and help with health costs.

If you have to pay prescription charges, it will probably be more cost-effective for you to buy a prescription prepayment certificate (PPC), which entitles you to a discount on repeat prescriptions.

Irrigation

Irrigation is an alternative to wearing a colostomy appliance. It involves washing out your colon with water either every day or every other day.

This involves gently inserting a small device into your stoma and attaching it to a bag full of water and an irrigation sleeve, which acts in a similar way to a colostomy pouch.

You slowly move water into your colon so that it washes it out and moves the stools into the irrigation sleeve. The equipment can be disposed of once the process is complete. A cap is used to cover your stoma in between irrigations.

Advantages of irrigation include:

• You choose when you want to perform irrigation.
• You don't have to wear a colostomy appliance (but may have to wear a small cap).
• You should be able to enjoy a more varied diet.
• You should experience less flatulence (gas).

Disadvantages of irrigation include:

• It's a time-consuming process that takes 45 to 60 minutes to complete, usually on a daily basis.
• To achieve the best results, irrigation should be carried out at the same time every day which could cause you problems when you are away from home on holiday or with work.

Some people also find irrigation unpleasant. It is possible to go back to using a colostomy pouch if you find irrigation is not suitable for you.

Irrigation may not be possible in some circumstances. For example, people with Crohn’s disease or diverticulitis are unable to irrigate their colon as it is too damaged. Irrigation is also not suitable for people having a course of chemotherapy or radiotherapy.

Irrigation probably isn't advisable for young children as it's quite time-consuming.

Diet

In the first few weeks after having a colostomy, it is likely you will be put on a low-fibre diet. This is because having a high-fibre diet can increase the size of your stools, which can cause the bowel to become temporarily blocked. After around eight weeks, you will usually be able to resume a normal diet.

As you recover you can start to eat a healthy balanced diet that includes plenty of fresh fruit and vegetables (five portions a day). 

You should be able to return to the diet you previously enjoyed. If you had a restricted diet you should be able to reintroduce those foods back into your diet that you previously avoided.

Read more about healthy eating and the importance of eating a balanced diet.

Smell & wind

Many people worry their colostomy will give off a smell that others will notice.

All modern appliances have air filters that have charcoal in them, which neutralises the smell. Most people will be aware of the smell of their colostomy because it is their own body. However, someone standing next to you will not be able to smell the stoma.

Immediately after your surgery your colostomy will make excess wind and noise. This will slowly reduce as your bowel recovers.

Your stoma nurse can advise on products you can use to help reduce any smell, and dietary advice to reduce wind.

Medication

Many medicines are designed to dissolve slowly in your digestive system. Having a colostomy shouldn't alter the effectiveness of your usual medication. If you do notice any tablets in your appliance, notify your pharmacist or GP who will recommend an alternative medication for you to take. 

Exercise

In the weeks following surgery, it is usually recommended you do some gentle exercise to help recovery.

How you recover will determine how much exercise you can do. If you feel any pain, stop immediately.

All colostomy bags are waterproof so you can go swimming.

Work

Once your bowel has healed, there is no reason why you can't return to work. If your job is particularly strenuous and involves a lot of heavy lifting, you may need to wear a support belt or a girdle. Your stoma nurse can advise about this.

It's likely to take several months before you're ready to return to work. However, it all depends on how you recover and the type of work you do. Whenever you do return you are likely to find it very tiring. It's a good idea to discuss potential options with your employer before having a colostomy operation.

Some employers may be happy to provide a degree of flexibility, such as allowing you to work part-time or at home, until your strength improves. Your employer may also be able to provide additional support, such as giving you access to changing facilities or adjusting your work responsibilities so you don't have to do lots of heavy lifting.

You don't have to tell your work colleagues about your colostomy (unless you want to). Some people find it's a good idea to tell one person in your workplace in case you need any support or advice.

Travel

There's no reason why you can't travel freely when you've had a colostomy, although you will probably need extra time when planning your journey.

Most stoma companies have a small information leaflet that you can carry with you at all times, which is available in several different languages. 

Your stoma nurse can give you advice about travelling with a stoma. It's recommended that you have travel insurance.

One essential item for people with a colostomy is a RADAR key. This provides you with access to public disabled toilets so that you can change your colostomy appliance when you need to.

You can get a RADAR key by contacting the Colostomy Association, which is a leading UK charity and support group for people with a colostomy.

When travelling abroad, it's a good idea to take plenty of colostomy supplies with you because you may have difficulty getting hold of them in another country.

Sex

There are several practical issues that could arise if you have a colostomy, which could have an impact on your sex life and your relationships.

Women

Women who have had their rectum removed, may find that having sex in the traditional "missionary position" is painful because the rectum no longer supports the vagina during sex. Trying different positions may help.

After surgery, many women also find their vagina is much dryer which can make sex uncomfortable. Applying a lubricating jelly before having sex may help.

Having weight placed on your stoma during sex can be painful, so you may want to avoid positions that could cause pain. Alternatively, you could protect the stoma with a cushion or pillow.

Your stoma nurse will be able to give you more advice.

Men

Following a colostomy, some men find the blood supply and nerve endings to their penis have become damaged. This can make it difficult getting or maintaining an erection (erectile dysfunction).

There are several ways to treat erectile dysfunction, including taking a medication called sildenafil, which helps increase blood supply to the penis.

Other sex-related issues

Aside from practical issues, you may be concerned about body image, self-confidence and how your partner may react to your colostomy, which can also have an impact on your sex life.

However, it's important to stress that many people who have a colostomy enjoy good sex lives but it can take several months to build up the confidence and trust to make this possible.

If you have a long-term partner, you may want to ask them if they want to see your stoma and colostomy equipment. Some people’s partners want to take an interest but others may find it too upsetting, at least in the short-term. There is no right or wrong way to react so try not to take a refusal as a personal rejection.

If the appearance of your stoma and colostomy equipment is off-putting during sex, you can always cover them with a nightgown or boxer shorts.

Other tips that may help improve your sex life include:

• changing your appliance before having sex
• changing your appliance to a small stoma cap before having sex
• covering the appliance with a satin or cotton cover (if the feel of the appliance against your skin is a distraction during sex)
• keeping your sense of humour: embarrassing mishaps often occur during sex, whether or not you have a colostomy

You should avoid having anal sex (if the rectum has not been removed) after a colostomy because this can lead to painful tearing and bleeding. You should also avoid using the stoma itself for penetrative sex because this can seriously damage it.