Clinimed - Life with a stoma
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FAQs

Please click on the links below to go straight to the relevant section you require

·  Support and Advice
·  Medical Queries
·  Post-Op
·  Nutrition
·  Travel
·  Sexual Activity
·  Your Entitlements


Support and Advice

Q. My bag is always ballooning. How can I stop this?
A. You may need to look at your diet as you may be eating too much fibre. You may also want to check that the filter on your bag is not blocked. You may need to change your appliance more frequently or even change to a different brand. Discuss this with your stoma care nurse.

Q. My output sits around the top of the bag. What causes this and what can I do about it?
A. This is commonly known as pancaking. This is when faeces comes out of your stoma and the faeces sits at the top of the pouch instead of sliding down into your pouch. This can cause your bag to leak. There are certain things that can help with this problem. You can try putting a small ball of tissue paper into the bag, or a small amount of olive oil to keep the sides of the pouch open. Wearing a filter cover over the filter may also help. Lastly, you may want to try another brand of stoma pouch.

Q. I want to start going out clubbing with my friends but I am scared my bag will show underneath the ultra-violet lights?
A. Modern bags are made in such a way that they will not show up underneath your clothes. They have special lightweight, breathable material which are designed to be discreet underneath any clothing.

Q. Is it better to bath with my bag on or off?
A. You bag is waterproof. It is entirely up to you which you choose to do. Remember your stoma will still work even when you are in the bath. Some people like to wear their pouch whilst bathing or showering. The pouches are designed to dry very quickly. Some users gently towel dry the pouch afterwards whilst some use a hairdryer to get most of the water off.

Q. Can I flush my bag down the toilet?
A. Most bags cannot be flushed down the toilet. However, there is now a revolutionary new toilet disposable bag that is environmentally friendly and biodegradable. It is called Freestyle® Flushable (UK only) Flair
Xtra®(all other countries).

Q. I find it hard to dispose of my pouch when out. Can I put my full bags into normal bins when out?
A. This is a common problem for many people. Most bags can not be flushed down the toilet. However, there is now a revolutionary new toilet disposable bag that is environmentally friendly and biodegradable. It is called Freestyle® Flushable (UK only) Flair Xtra®(all other countries).

Q. I am a Muslim with a colostomy and find it difficult to be clean for prayers. What can you recommend?
A. It may be useful to look at alternative products such as 2 piece products, flushable bags or irrigation to help with your rituals before prayers. Click here for cultural information.

Q. I had my stoma operation 9 months ago and still feel very isolated. Is there anybody I can talk to?
A. It is not uncommon to still feel this way after this period of time. There are many support groups that may be able to give you advice and information and will listen to your fears or concerns. They can also put you in touch with other people who have had similar experiences. Click here for a full list of support groups.

Support groups


Q. How do I find a stoma care nurse?
A. Most hospitals will have a stoma care department. Contact the local hospital switchboard and they will put you in contact with the relevant department. Alternatively, contact the Ostomy Lifestyle Centre who will advise you of the nearest stoma care nurse to you.

Support groups


Q. What do I tell my children about having a stoma?
A. Usually children are able to cope if they are given the information in a simple way. Many stoma care nurses will discuss and advise you of simple ways of introducing the idea to your children.

Q. Can I swim in the sea or the pool? Do I need a bag on?
A. Yes you can swim in either the sea or the pool. It is advisable to keep your bag on because other people may be in there with you. They may not have seen a stoma before. If your stoma is active whilst you swim it will also be more hygienic for other people.
Medical Queries

General

Q. Can I have a normal delivery for my first child. I have an ileo-anal pouch.
A. You may be advised to have an elective caesarean section to preserve the integrity of your anal sphincters.  A vaginal delivery is sometimes possible.  Your surgeon and obstetrician will be able to advise what is appropriate with you and discuss any concerns you may have.

Q. Can I get pregnant now I have a stoma?
A. Yes if you are having unprotected sexual intercourse. A stoma will not change your fertility in any way.

Q. Why do I have to take this special medicine before my colonoscopy?
A. The special medicine will clear your bowel out and therefore allow a clear view. A clear view is essential to enable the specialist to see the whole bowel and look for any abnormal areas. It will also let the specialist take biopsies if necessary to decide on the next course of action. Click here for more information on pre-operative investigations.

Q. I have been told I have a polyp. Do I have cancer?
A. Some polyps can become cancerous after a period of time if they are not removed. Most polyps are removed during a colonoscopy and then examined under a microscope. Most polyps are caught early but your surgeon will discuss your results with you.

Q. My mum had bowel cancer. Does that mean I will get it?
A. Not necessarily. Genetic cancers only account for around a total of 6% of all cancers.  If you have a strong family history of bowel cancer, it may be advisable to see your GP for referral to a family screening centre. Click here for a list of support groups.

Q. I keep passing a jelly like substance from my back passage. What is it and what can I do?
A. This is mucus and is a normal substance made by the bowel. Sit on the toilet and let it pass naturally. A small pad may give you confidence if the discharge is frequent. Click here for more information on discharge and rectal pain.

Q. I have to go for chemotherapy. Will it affect my stoma?
A. It may affect the output from your stoma. Your stoma care nurse can advise you.

Q. How long will I keep my temporary stoma?
A. You can have a temporary stoma for anything from two weeks to a year. It will depend on the surgery, your medical condition and your rate of recovery. You may choose to keep this stoma, as there are risks involved in closure.

Support groups

Q. I have Crohn’s disease and have sores around my stoma and on other parts of my body. What are they and what can I do about it?
A. There are many reasons why you may have sores around your stoma. It may or may not be related to your Crohn’s disease. It may be something simple like you are cutting the hole in your pouch too large and faecal waste is getting on to the skin and making it sore. It is very hard to tell without looking at it and we would recommend you contact your stoma care nurse so they can assess your situation and advise you appropriately.

Q. My stoma bleeds when I touch it. Is this normal?
A. Yes. This is perfectly normal. It may be down to rough cleaning and washing of your stoma. Your stoma lining is delicate and care should be taken when cleaning. A small amount of pressure with a soft cloth will stop any bleeding.  If the bleeding is excessive contact your stoma care nurse.

Q. I have sore skin around my stoma. And my bag leaks all the time. Help!
A. Sometimes your stoma changes size and shape and some can even start to sink a little. All of these problems, whilst relatively common, can cause your stoma bag to leak. You will need to have your stoma reassessed. Please see your stoma care nurse. Click here for more information on skin soreness and other clinical complications.

Q. I have noticed a bulge around my stoma and it aches in the evening. What is it?
A. This sounds like it is a parastomal hernia. This can occur immediately following surgery or even years later. The bulge is where your underlying muscle (deep in your abdomen) is trying to push through the upper abdominal muscles. This most often happens if you have weak abdominal walls or have lifted something heavy and strained the supporting muscles. It is not serious but will need to be assessed by your GP or stoma care nurse who will advise the appropriate treatment.


Surgery

Q. I have got colitis. Will I need a surgery and a stoma? Is there an alternative operation to this?
A. If your colitis is active and surgery has been recommended by your physician then you will need an operation.You will be referred to a surgeon and a stoma care nurse. There is an alternative operation to a permanent stoma. This is called an ileo-anal pouch.

Support groups

Q. I have been told I need surgery for bowel cancer. Will I have to have a permanent stoma?
A. It will depend on the operation that the surgeon performs. He will discuss this with you before your surgery. It is important that you ask him this question, as it may be a temporary or a permanent stoma.

Colostomy

Q. I have heard you can irrigate with your colostomy. What is irrigation and how do I learn about it?
A. Irrigation is only suitable for people with end colostomies. It is not for everybody and can take a long time. Your scan will be able to tell you if it is suitable for you.

Urostomy

Q. I have a urostomy and my urine smells.  Why?
A. Your urine can smell because of certain foods or medication that you may be taking. Foods such as beetroot will turn the urine red and whilst it looks like blood, it is merely discolouration. Smell also may result from a urinary tract infection. If you are feeling generally unwell, or have pain on urinating, contact your GP or stoma care nurse as you will need antibiotics immediately.

Q. I have noticed my urine is bright red. I have a urostomy?
A. You may have a urinary tract infection. If you feel unwell or have pain on urinating please contact your GP immediately. You may have rubbed the stoma too hard whilst cleaning causing it to bleed. You may have eaten food or taken medication that colours the urine.
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Support groups



Post Op

Q. When can I start lifting following my surgery and what weight can I lift?
A. It is advisable not to lift heavy items for the first three months following your surgery. Your muscles are weak and will be prone to straining. This can lead to a hernia. Click here for more information on parastomal hernias.

Q. Can I go back to my job as a roofer following my ileostomy?
A. Yes. Once you have fully recovered from your surgery. It may be a good idea to protect you stoma with a stoma guard. You can discuss this with your stoma care nurse.

Q. When can I get back to work?
A. You will need to be away from work for at least 8-12 weeks following major surgery. Your surgeon or GP will assess your fitness to return to your job. You may go back to light duties at first and work up to your normal level of work.

Q. Can I play rugby with my ileostomy?
A. Yes. Once you have fully recovered from your surgery. Everybody is different and will heal at different rates so it may be at least 3 months plus before your muscles have healed enough to do sport or other activities such as lifting. It may be a good idea to protect your stoma with a stoma guard. You can discuss this with your stoma care nurse.
Nutrition

Q. Are there any foods I should avoid now I have an ileostomy?
A. Certain foods may cause a blockage and should be avoided. Things like nuts, orange pith, fruit skins,celery and sweet corn may need to be chewed well before swallowing. Some foods will cause more gas and odour to be produced than others. For more detailed information please refer to the food section in the website.
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Support groups

The Ileostomy and Internal Pouch Support Group


Travel

Q. I had my stoma formed 3 months ago and I am going on holiday abroad shortly. What do I need to do about travel insurance?
A. You will still need travel insurance. It is imperative that you declare any pre-existing illness because if you do not and need to claim you may find your policy is invalid. The Ileostomy Association or the Lifestyle Ostomy Centre may be able to help.

Q. Do I have to wear a seat belt when driving?
A. Yes. You can get special devices from car shops to fit over your seat belt. This will stop any restriction of the seat belt over your stoma.

Q. Can I get a disabled sticker for the car?
A. No. Not unless you have other underlying medical conditions which will qualify you for a disabled sticker.
Sexual Activity

Q. I am a 45 year old male and I have to have my bladder removed for cancer. I have been told it will affect my sex life. Is there any information or help you can give me?
A. Removal of the bladder does cause impotence (the ability to achieve an erection). The surgeon may have discussed this with you and ways of helping you following surgery. The hospital or other specialist centres have experts in this field. They routinely see men who cannot achieve or maintain their erection or have problems with sexual matters. (Click here for more information sexual activity.)

Support groups

Q. I am too embarrassed to have sex following my operation for a colostomy nearly a year ago. I sleep in a separate bed now and feel very lonely. Is there anything I can do?
A. It sounds as if you need professional help. Please do not feel alone as this is perfectly normal. Many people feel the same following major surgery. There are lots of groups around where you can be referred to. Your stoma care nurse will be able to help you and refer you to the appropriate person. Alternatively, click here for a list of some of the support groups available.

Support groups




Q. Can I still take my contraceptive pill with my stoma?
A. You may be advised to consult with your GP or family planning clinic if you have an ileostomy as the pill may not be adsorbed effectively. You will need some other form of contraception if you are not planning to get pregnant. Click here for more information on sexual activity, and a list of support groups.

Q. I am having trouble with my sex life since surgery. Is this normal?
A. Some operations involving the bowel and bladder may result in some disturbances to your sex life for a period of time. Often this will diminish with time. Many people have similar concerns or worries and your stoma care nurse or surgeon will advise you on where to get more information or refer you to the appropriate specialist. Click here for a list of support groups.

Q. I cannot get an erection following surgery. What can I do?
A. The surgeon will have discussed this with you together with other ways of helping you following surgery. This may be in your own hospital or at other specialist centres where experts in this field routinely see men who cannot achieve or maintain their erection or have problems with sexual matters. Click here for more information on sexual activity, and for a list of support groups.

Q. I am a homosexual. Finding a partner is difficult because I have a colostomy. Is there anybody I can talk to?
A. There are many support group that may be able to give you help and advice. Many of the support centres have access to not only up to date information, but other support groups. There is a specific gay and lesbian group, or if you would like to meet other people in groups for colostomates, you would be more than welcome there as well. In these groups you will find many other people who have been through similar experiences and feelings as yourself and you may find it helpful to talk to them as a group or even on an individual basis.
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Support groups




Your Entitlements

Q. Can I get disability allowance.
A. No. You are not disabled because you have a stoma. However, if you may have another medical condition that would entitle you to apply for disability allowance you may be entitled to it.  

Q. Can I get free prescriptions?
A. Any man or woman over 60 years of age or receiving certain benefits will be entitled to free prescriptions in the UK. However, if you are under 60 with a permanent stoma you are entitled to free prescriptions.

Q. I have bowel cancer and have been told I only have a short time to live. How do I get my allowances quicker?
A. There are ‘special rules’ for allowances for some patients. Your stoma care nurse, Macmillan nurse or palliative care nurse will advise you.