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Frequently Asked Questions

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Stoma

What is a colostomy, ileostomy, urostomy?

A colostomy is formed during an operation where a portion of your large bowel called the colon is bought out onto the surface of your abdomen. The faecal ouput will be expelled into a bag stuck on your abdomen. If your colostomy is formed towards the end part of your colon the faecal output will be fairly firm (once your bowel has settled down after your operation).

An ileostomy is formed during an operation in which the end of the small intestine, the ileum, is brought out through an opening in the abdomen. The contents of the intestine, unformed stool, are expelled through this opening into a bag called an appliance.

A urostomy is formed during surgery to divert urine through a new passage and then through an opening in the abdomen. In a continent urostomy, the urine is stored inside the body and drained a few times a day through a tube placed into an opening called a stoma. An incontinent urostomy requires a bag to be stuck over the stoma for the urine to pass into it.

What does a stoma look like?

A stoma is formed from part of the bowel which is bought out onto the surface of the abdomen. The stoma is red in colour and moist, the same as the inside of your mouth. The size can vary but would be between 25 - 45mm in diameter approximately. When the stoma is first constructed it will be swollen and over a couple of weeks will shrink down in size as the swelling subsides. The stoma has no feeling.

Will my stoma smell?

If the appliance is fitted well then there should be no odour coming from the stoma. You should only be aware of it when you are changing it. The filters fitted on the bag to allow the escape of flatus have charcoal in them which deodorises the flatus. There are some deodorisers that are available that can be used while changing the appliance. Occasionally some people find that they can smell it, sometimes due to problems with leaks and it is then worth using deodorising drops or capsules that can be put into the pouch to then be in contact with the effluent straight away. Oakmed have Gel X capsules that would help with this. Certain foods can make the effluent more odourous including onions, cabbage, sprouts, beans, strongly spiced or rich fatty foods and beer. Other foods can help reduce odour including cranberry and orange juice, parsley, yoghurt and peppermint oil.

My stoma is bleeding, is that normal?

The stoma has a good blood supply so it is prone to bleed slightly when cleaned this is quite normal and should cease after a few minutes. Try not to be too vigorous when cleaning the stoma. If the bleeding appears to be coming from inside the stoma or if the bleeding continues contact your stoma care nurse or GP.

Can I control my bowel movements?

You do not have any muscles in your stoma to be able to control when the stoma works it will happen involuntarily. The stoma will tend to be more active after having a meal.
If you have a colostomy you may find that it settles into a similar pattern of working as when you used to have your bowels open prior to surgery.

Also if you start to irrigate your colostomy this will give you more control over when your bowels will work. (see What is Irrigation)

What about diet?

Once you have had your surgery and your bowels have settled down you generally can eat anything. On an individual basis you may find that certain foods cause you problems such as loose stool but it is worth trying the same food on three separate occasions before avoiding it altogether. There are some foods that may cause problems with flatus, odour and loose stool for some people.

With an ileostomy it is best to be careful with any food that has a skin or is solid for example nuts, pith on citrus fruits, raw vegetables, skins on tomatoes, grapes, sweetcorn and potatoes. It is possible for these foods to cause a blockage in the bowel occasionally. You are able to have them but it is wise to have small amounts, chew them really well and drink a good amount of fluid with it.

What about gas?

You will continue to produce flatus but you will not have any control as to when it is emitted. Occasionally this will make a noise, particularly if your output is more liquid.

Most appliances now have a flatus filter on them which allows for the escaping of gas (to prevent ballooning of the bag) but they also deodorise it as well. If you seem to be experiencing excessive flatus certain foods can help minimise this including natural yoghurt, charcoal biscuits, fennel tea and peppermint oil. Certain foods would also increase the amount of flatus produced although this can be quite individual. These might include alcoholic beverage, beans cabbage, fizzy drinks, chewing gum, dairy products, onions and nuts.

What about diarrhoea and constipation?

Even though you have a stoma you will still be susceptible to diarrhoea and constipation.

Ileostomists must take care not to get dehydrated during episodes of diarrhoea. It is advisable to have rehydration fluid during this time.

Foods that will help thicken an out put include apple sauce, cheese, crackers, ripe bananas, boiled rice, white pasta, arrowroot, marshmallows and white bread.

For troubles with constipation you may find relief from having any hot drinks, cooked fruits, cooked vegetables, fresh fruits, fruit juices and water.

What is pancaking?

Pancaking is a problem sometimes experienced by colostomists. The output becomes thick and sticky and therefore stays at the top of the bag in a typical ‘pancake’ shape. As more stool is expelled there is often then nowhere for it to go and it will force its way beneath the flange and skin and cause leaks.

Hints and tips for coping with this include: increasing your fibre and fluid intake to try and alter the consistency of the stool. You can also keep the stickers over the filter on your bag to prevent all the air escaping. This helps create space in the bag for the stool to move into. Applying a small amount of oil to the inside of your bag can also help.

See our detailed leaflet on pancaking for more information.

How can I tell if I have a urinary tract infection when I have a urostomy?

You will notice that your urine may become a darker possibly reddish colour and more cloudy / milky and have a strong odour. You may also find that there is more mucus being produced.

When can I return to work/ travel?

After major abdominal surgery it is usual to remain off work for at least 6 weeks. However this is dependent on a number of factors such as pre operative fitness, recovery rate from surgery, complications post surgery and the type of job undertaken (whether it is a physical job or a desk job). It has to be remembered that healing continues for several months post surgery so if you can negotiate returning on a part time basis to begin with you may find this beneficial. Seek advise from your GP or surgeon if you are unsure.

When driving a car you may find that part of the belt passes over the stoma. If this is uncomfortable than you can get a clip that fixes onto the seatbelt to hold the belt loosely. The clip grips the seatbelt if the car stops suddenly. Halfords sell a ‘Klunk Clip’.

If you are unsure about travelling do check with your GP or surgeon. Also when you buy travel insurance you must disclose recent surgery and stoma formation. To build up confidence and stamina it is worth trying a few shorter trips first and building up to longer trips.

From the points of view of both expansion of air in the body cavities and of wound healing, air travel should not be undertaken within two weeks of abdominal surgery.

For further tips on travelling see our dedicated articles elsewhere on this site.

Are there ways of meeting other people who have stomas?

Your Stoma care nurse may have a list of people who are happy to come and talk to you about life with a stoma. They may also run stoma support groups where people with stomas meet socially to exchange any hints and tips.

The stoma associations – the Ileostomy Association (http://www.iasupport.org); the Urostomy Association (https://urostomyassociation.org.uk) and the Colostomy Association (http://www.colostomyuk.org/) will all be able to offer information and support.

Why do I still sometimes experience rectal pain, or discharge from the rectum?

If you still have your rectum you may still have active disease which could cause some pain and the production of mucus. Or there may be some old blood/stool and mucus left from prior to the operation. This may well make you feel as though you need to open your bowels. This is quite normal and you may find it helps to sit on the toilet to allow you to open your bowels. If you continue to feel as though you need to open your bowels you may need your stoma care nurse to give you a suppository in order to help remove any old output. Some people need to wear pads initially to protect their clothing.

If you have had your rectum removed you may feel quite uncomfortable in that area. This is because the wound there takes a few months to heal so the pain could possibly take a few months to settle down. This pain and discomfort is sometimes referred to as ‘phantom rectum’. You may find that it helps if you can alter your position to relieve any pressure. If the pain is too uncomfortable you should see your GP for some painkillers. They may give you some anti depressants which actually work very well at dulling nerve pain (they are given at a lower dose than if needed for depression).

Occasionally you may feel the need to open your bowels. Even though your rectum is not there it can sometimes help just to sit on the toilet until the sensation passes.

Appliances

How do I get my supplies?

There are two ways to obtain your supplies.

1) Obtain your prescription from your GP for approximately one months worth of supplies. Take this to your local pharmacy who will order them in for you. Some pharmacists will cut the bags to the size of your stoma for you.

2) Obtain your prescription from your GP and send it to a delivery company (your stoma care nurse will be able to give you details). The delivery company will then send the supplies to your home, with free bags and wipes and they will also cut them to the size of your stoma if required. Oakmed can supply this service. If you would like more information please phone us on 0800 592 786.

How much do I have to pay for my appliances?

If you have a permanent stoma then you are exempt from paying prescription charges. Your stoma care nurse or GP will be able to give you an exemption form (FP92) to fill in.

If it is unclear whether you will have a permanent or temporary stoma then the decision is made by the GP as to whether you should be exempt.

For a temporary stoma it is usually required that you pay for prescription charges.

When should I change my appliance?

If you have a colostomy bag that sticks straight onto your abdomen then this will require changing each time it becomes full, sometimes three times a day.

If your colostomy bag is in two pieces then the bag can be removed each time it is full and the flange, which is stuck to your skin, can remain in place for approximately 2-3 days. This is very individual to the person – some people may want to change it more regularly while others will prefer to keep on for longer. As long as it is not making your skin sore or you are experiencing problems with leaks then this is fine.

A similar time of 2-3 days is recommended for people using urostomy or ileostomy bags as the output can be drained from both of these bags.

How should I clean my stoma?

Warm water is the best thing to use for cleaning around the stoma. It is gentle to the skin, it doesn’t contain any irritants or leave any residue which could irritate your skin.

People also use the wipes provided by the delivery companies or soft kitchen roll, jay cloths or nappy liners – basically anything that is soft but doesn’t fall apart while cleaning.

Sometimes people will use wet wipes while they are out for the day but this isn’t recommended for constant use because of possible irritation.

My stoma isn’t round, will I be able to get appliances to fit?

The appliances are nearly all designed to be cut to fit your stoma. This can either be done by yourself, your delivery company or possibly your pharmacy. The delivery company or pharmacy will need to have a template of the shape of your stoma in order to do this. Your stoma care nurse can do this for you if you are unsure.

What should I do to store my appliances correctly?

They should be kept in a cool dry place. If they are next to any heat this could dry the adhesive out so that the bag will not adhere to your skin or it can start melting the adhesive. If you are travelling in a very hot country it is advisable to put your appliances in a cool bag and when required warm them slightly, for example by putting the appliance under your arm.

Do Oakmed products contain latex?

No, none of our products contain latex as we are very aware of the problems that this could cause.

What do I do if I have a problem with my appliance?

If the appliance itself appears faulty then phone the company who produce them.

Why is it difficult to get appliance to adhere properly?

This could be due to a number of things:

- Your skin needs to be completely dry right up to your stoma before applying your bag.

- The appliance needs to be a good fit.

- Any use of creams needs to be done very sparingly and needs to be rubbed right in.

What should I do if I get a skin reaction?

Check that it is not something new you are using in your routine. Sometimes wet wipes or other similar products can cause skin irritation.

It could be that you have experienced an allergic reaction to the product but this is a very rare occurance as most products are made from hypoallergenic substances. However if it is an allergy it will probably mean that you will need to change the product you are using.

What appliances are used for colostomy, urostomy and ileostomy?

People that have a colostomy tend to use a bag that is closed i.e. there is no opening to empty it from. This is because the output tends to be firm and would therefore would be difficult to properly drain it. This means that the bag needs to be changed each time it fills.

An ileostomy has a part at the bottom of the bag that unfolds allowing for the drainage of the effluent that can then be cleaned and rolled back up. The appliance is then changed when required.

A urostomy bag has a one way valve built into it to prevent the flow of urine back into the stoma. It also has a tap at the bottom that allows for the drainage of urine as the bag fills and for the attachment of a night bag.

How should I dispose of my used appliances?

If at all possible it is advised that you should completely empty your appliance into the toilet and then wrap it up in a disposable bag which can then be placed in the household rubbish in most places. Your stoma care nurse will advise you if you are required to do anything different

Can I shower, bath or go swimming?

All appliances have been designed to stay on when in contact with water so they are fine to wear when washing or swimming. The material film on the bag is usually made from towel dry material. You can also obtain smaller sized appliances from most companies that are more discreet for swimming.

Can I play sport?

Once you are fully recovered from your operation you should be able to play sport. If it is a contact sport such as rugby then it may be wise to wear a guard over the stoma such as the Ostoshield which is held in place with an elasticated belt.

Colostomy Irrigation

What is irrigation?

Colostomy irrigation is a method of mechanically cleaning the distal colon of faeces by instilling between 500 – 1000 mls of lukewarm water through the stoma on a regular basis. As the water flows against the wall of the bowel it stimulates the colon to empty. The aim of irrigation is to control stomal output to a regular time. This permits you to regain control of the stoma and unlike the person whose stoma spontaneously evacuates it avoids the need to wear an appliance. Most people wear either a very small bag over the stoma or a stoma cap as this absorbs any mucus that may be produced.
Unfortunately people with an ileostomy are unable to use this process.

When can I start to irrigate?

Once it has been agreed by your Consultant, your stoma care nurse can start teaching you how to irrigate. You need to be physically recovered enough to be able to learn and manage the procedure as once you know what to do it is then a self-management method for use at home. Your bowel also needs to have settled down enough to be producing formed stool.

How often should I irrigate?

Daily (24hr) irrigation should continue until the stoma no longer acts in between irrigations. It can take 6 – 8 weeks for the bowel to become regulated with irrigation. It is best if you can get into a routinue and try and complete the irrigation at a similar time each day. Once the stoma no longer acts between irrigating then you can start making the time between each irrigation longer. Some people manage to go for 72hours but 48 hours is more normal. You can continue 24 hourly if this gives you more confidence.

The water is not going into my stoma – what should I do?

There could be a number of reasons for this:

- The cone tip could be blocked with faces so remove the cone, clear the debris and recommence the procedure.

- The cone is against the bowel mucosa requiring an adjustment of position.

- You could be too tense, so take some deep breaths and try to relax.

- There could be insufficient water pressure requiring an adjustment to the height of the reservoir.

- You could be trying to use too much water so reassess the
volume and adjust accordingly.

When shouldn’t I irrigate?

- If you have any active disease such as Crohn's or bowel cancer.

- If you are undergoing treatment with radiotherapy or chemotherapy.

- If there is concern that you have a bowel obstruction or stricture.

- If you have a parastomal hernia.

Further tips to help with irrigation

- When you are introducing water into your stoma via the cone, you may feel the pressure building up in your abdomen, if this becomes uncomfortable don’t take the cone out, just turn off the water flow and once the feeling has receded gradually turn the water back on. You need enough water in the colon to clear it out properly otherwise the irrigation will only last 12 hours.

- The reservoir of water to go into your stoma must be at least shoulder height otherwise there will not be enough pressure to make the water flow into the colon. It doesn’t matter if it is higher.

- It’s best if you lubricate the cone with a lubrication gel such as KY jelly to aid gentle insertion into the stoma. There are several companies who supply equipment for irrigation which is available on prescription from your GP. Your stoma care nurse or the Associations will be able to inform you of the companies.

- If you find that your bowel is a bit sluggish and not emptying properly after irrigating you may find taking one sachet of Fybogel 12 hours before irrigating may help.

- If you have lots of spicy food and/or alcohol then it is best to irrigate the next morning even if you are not due to do it then.

- Irrigating does help reduce problems with wind.

If there are any further questions that have not been covered by this list or there is anything you would like to discuss then please do contact us on freephone 0800 592786

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