Bowel problems after pelvic radiotherapy This information is an extract from the booklet Understanding pelvic radiotherapy in men - possible long-term side effects. You may find the full booklet helpful. We can send you a copy free see page 11. Contents Loose stool or diarrhoea Needing to open your bowels often Bleeding from the back passage Needing to rush to the toilet or leakage from the bowel Often feeling that the bowel has not emptied properly Passing too much wind from the bottom Difficulty emptying the bowels Bowel pain Greasy and pale stools Very late bowel problems Uncommon problems Tests for bowel problems More information and support During radiotherapy to the pelvic area, inflammation of the large bowel (colon and rectum) and anus occurs. Inflammation may cause symptoms such as: abdominal pain or cramps diarrhoea a feeling of repeatedly needing to open the bowels (tenesmus) leakage/soiling (incontinence) wind passing blood or mucus when you open your bowels. Macmillan and Cancerbackup have merged. Together we provide free, high quality information for all. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk 1 of 11
Once the radiotherapy has ended, the inflammation usually settles down over a few weeks or months and the way the bowel works goes back to normal. It may take six months or more for the bowel to settle into a regular pattern. However, the bowel is often permanently scarred by the radiotherapy and most men will have a permanent change to their bowel habit. The change in the way that your bowel works may be very slight, for example, having to go to the toilet twice a day instead of once. However, up to half of men who have had pelvic radiotherapy find that the change in the way their bowel works affects their day-to-day life. Up to 1 in 3 men (33%) need to go to the toilet very often. They aren t able to easily work, travel or carry on life as normal. Bowel problems may make you feel very tired and worn-out. Problems that may continue for some men after radiotherapy are mentioned below with ways of dealing with them. Loose stool or diarrhoea Up to 1 in 2 men (50%) who ve had pelvic radiotherapy have a loose bowel motion (stool) or diarrhoea from time to time afterwards. This may just happen occasionally or may be quite often. The loose stool or diarrhoea may be because the bowel is a little less flexible after radiotherapy, so food travels through more quickly. In some people, diarrhoea may be caused by specific things in the diet, such as: too much or too little fibre too much lactose (milk products) too much fat. If you want to make changes to your diet it s a good idea to ask your cancer specialist or GP to refer you to a dietitian for specialist help. If you can t carry on a normal life because of the diarrhoea, you can ask your doctor to prescribe anti-diarrhoeal medicines such as loperamide (Imodium, Arret ), codeine phosphate or diphenoxylate (Lomotil ). Some people may need to take them in higher doses than usually prescribed. They are safe to take for an unlimited time. Your specialist or a continence adviser can advise you about when to take Page 2 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
the medicines as this can affect how effective they are. Most work best when they are taken half an hour to an hour before a meal. Ongoing diarrhoea If the anti-diarrhoea drugs don t help, let your doctors know. The radiotherapy may have caused a condition called bile acid malabsorption or another condition called small bowel bacterial overgrowth, which can be treated with specific medicines. You can get fact sheets with detailed information about these conditions from the Royal Marsden Hospital. If diarrhoea is causing you problems and your cancer specialist is not sure what to do, you can ask them to refer you to a bowel specialist (gastroenterologist). Needing to open your bowels often Many people have this problem after pelvic radiotherapy. It can happen especially in the morning and some people have to go several times before they feel the bowel is empty. This may be because the radiotherapy makes the bowel less stretchy so it can t hold as much stool. You may find that it helps to take anti-diarrhoea medicines or do regular anal sphincter exercises and pelvic floor exercises. You can practice holding on to the stool to build up the capacity of the bowel. If you need to go to the toilet often (or at night) and also have some bleeding from your bottom it s important to tell your cancer specialist. It s also important to tell your doctor if you lose weight or if you sometimes get constipated and can t go. They can refer you to a bowel specialist (gastroenterologist). Bleeding from the back passage Bleeding from the back passage (rectum) after radiotherapy is very common. This is because the radiotherapy makes the blood vessels in the lining of the bowel more fragile. Bleeding can also happen: after you have strained to pass a large stool if you have opened your bowels several times in a short period Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 3 of 11
if the radiotherapy has made piles (haemorrhoids) worse. Bleeding can also be a sign of some serious conditions (including cancer) so it s important to tell your doctors if it happens so that they can investigate the cause. Your doctors may recommend that you have tests, which will probably include an examination of the bowel using a flexible tube with a light and lens on the end (a flexible sigmoidoscope). You can ask your doctor if they think it s necessary for you to have this. If the bleeding is caused by damage to the small blood vessels in the lower part of the bowel, it usually improves gradually over many years. It is rare for the bleeding to be heavy or to cause any other long-term problems. However, people who take blood-thinning drugs such as warfarin or aspirin may find that the bleeding is heavy. Your doctor or specialist nurse can give you advice about this. If the bleeding is minor or not a problem for you, you will probably not need any further treatment. Treatment for bleeding from the back passage If the bleeding is heavy or is a problem for you, you may be prescribed a drug called sucralfate (Antepsin suspension ), which is given as an enema. This drug helps by coating the lining of the rectum and may reduce inflammation and bleeding. It is important to make sure that you don t get constipated. If the bleeding is very heavy, it may be possible to stop it with laser treatment. Using an endoscope (a thin, flexible tube with a light and lens at the end), a laser is directed at the inflamed and damaged areas. An enema containing the drug formalin given into the rectum can be helpful for some men. High pressure oxygen treatment (hyperbaric oxygen therapy) has also been shown to be useful. Any treatment that you need will be explained to you by your doctor or specialist nurse. Page 4 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
Needing to rush to the toilet or leakage from the bowel Bowel problems after pelvic radiotherapy Not being able to get to the toilet in time is one of the most embarrassing things that can happen to anyone. Up to 2 in 5 people (40%) who have had pelvic radiotherapy may find at some time or other that they can t get to a toilet in time, or that their bowels open without any warning (faecal incontinence). For a small number of men this may happen regularly. If this happens, it can have a huge impact on your life. You may find it embarrassing to talk about, but it s important to let your doctor or a specialist nurse know. A lot can be done to help. If you have problems controlling your bowels, you can ask your doctor or nurse to refer you to a bowel specialist (gastroenterologist) or a continence adviser. These accidents can happen because the radiotherapy may make the lining of the bowel thicker and less flexible so it can t hold as much stool. This can make it difficult to hold on to the stool until you get to a toilet. The radiotherapy may also have an effect on the muscles of the anus. These muscles usually prevent the stool coming out of the anus. Understandably, many people who have had an accident feel very panicky that it may happen again when they feel a sensation in their bowel. Feeling panicky can make the bowel work faster and can make accidents more likely. Dealing with leakage from the bowel Your doctor or a continence adviser can advise on all sorts of ways to improve bowel control. Some of the following may help: Do regular anal sphincter exercises, pelvic floor exercises and learn to control your bowel muscles. Try to establish a regular, predictable bowel habit. Eating triggers bowel movement for many people, so this may be after mealtimes. Practice holding on to the stool to build up the amount the bowel can hold. Find ways of reducing stress, as stress stimulates the bowel. Stress reduction is taught at some continence clinics. Make time to go to the toilet just after waking up and try to go after meals. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 5 of 11
Do relaxation and breathing exercises while on the toilet. A continence adviser can show you how to do abdominal massage to improve bowel control. A dietitian or continence adviser can help you to change your diet to reduce diarrhoea. You may need to try different foods to find what suits you best. You could try changing the amounts of fruit and fibre in your diet. Fatty foods can slow down or speed up stomach emptying. Spicy foods can stimulate the bowel in some people. Some artificial sweeteners (found in chewing gum, mints and sweets) can stimulate the bowel. Reduce caffeine as this stimulates the bowel. Reduce alcohol as it stimulates the bowel. Try fibre supplements to make the stool more bulky. Anti-diarrhoea drugs. Low doses of some anti-depressant drugs (these slow down the bowel). Use anal plugs (available from the Bladder and Bowel Foundation). Keep a diary of how your bowel is working so your doctor or a continence adviser can work out what might help you. If you find it difficult to control your bowels, it s very important to talk to your doctor or nurse, or a continence adviser at your hospital. Many things may help you to go back to leading a normal life, without the worry of needing to be near a toilet or that you will have an accident. If you are too embarrassed to talk to people you know, you can contact the Bladder and Bowel Foundation. They can tell you about your nearest continence clinic or continence adviser. There are over 400 continence advisers and many continence clinics in the UK. The website bowelcontrol.org. uk also gives information and practical advice on dealing with bowel problems. Coping with bowel problems when away from home If you need to go to the toilet more often and feel you can t wait, you can get a public toilet key that gives you access to around 7,000 locked public toilets around the country. This can help you to get into toilets quickly and feel less worried when you go out. You can also get a Just Can t Wait card to show to staff in shops and pubs etc. The card explains Page 6 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
that you have a medical condition that requires urgent need of a toilet. You can get a toilet key or the Just Can t Wait card from The Bladder and Bowel Foundation or RADAR. Hygiene Pads are available from your district nurse or GP. They may be available on the NHS or you may need to pay for them. Continence advisers, specialist nurses and our cancer support specialists can advise you on caring for your skin if it gets sore. Often feeling that the bowel has not emptied properly This is common after radiotherapy. It is probably due to cramp (spasms) in the muscles which stimulate the bowel. The bowel is a muscular tube and the bowel muscles squeeze the stool down and out of the bowel. Radiotherapy may sometimes change the way the bowel muscles work, so after you have tried to open your bowels, your muscles may carry on contracting. This makes it feel like something is left behind. This feeling is called tenesmus. Tenesmus can occasionally be due to a polyp (a benign growth) in the bowel or a bowel cancer. So, if you have tenesmus, your doctor will need to examine your back passage with their finger. They may recommend that you have a test called a flexible sigmoidoscopy. A doctor or specialist nurse uses a flexible tube with a light and lens on the end to examine the lower part of the bowel. In most people with tenesmus, tests will find it isn t due to a cancer. Often the spasms can be controlled using pelvic floor exercises, taking some extra fibre to bulk up the stool or using very low doses of antidepressants. Passing too much wind from the bottom Some people find that they don t have very good control of wind. Pelvic floor exercises should help. There can be many reasons for wind, but the most common is eating too many vegetables that create gas in the bowel. Any food that contains starch (complex carbohydrates) and dietary fibre will go through a process in the bowel that produces gas. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 7 of 11
Foods most likely to cause gas include: pulses (such as peas, beans and lentils) vegetables from the brassica family (such as brussel sprouts, cabbage and artichokes) onions high-fibre food such as bran fizzy drinks. Many people diagnosed with cancer start to eat more healthily, which often includes more vegetables and can lead to more wind. Another cause of wind is constipation, as the bacteria living in the bowel have more time to produce gas. Some common bowel conditions such as diverticular disease may also make people feel they have wind. Some medicines can also produce gas, such as lactulose and fybogel. If wind is a problem, it s important to think about your diet. You may be having too much fibre. If you usually have slow or normal bowels or have had diverticular disease in the past, it can help to regularly take a medicine to bulk up the stool, such as normacol granules. The bulking-up medicines make the stool travel through the bowel a bit quicker. Rarely, wind may be caused by too many bacteria growing in the small bowel this is called small bowel bacterial overgrowth and can be helped by antibiotics. Difficulty emptying the bowels Some people may have difficulty opening the bowels properly or feel pain when they try to open their bowels. The anus may feel too tight or narrow. This can be caused by a tight band of scar tissue that narrows the opening of the anus (known as an anal stricture). If this is mild, your doctor may recommend that you use a stool softener or fibre supplement to help ease your bowel movements past the narrow anal opening. If the narrowing is more severe, you can be referred to a bowel specialist who will either carefully stretch (dilate) the anal opening or surgically cut through the scar tissue. These procedures are usually done under a general anaesthetic. Page 8 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
Bowel pain Bowel problems after pelvic radiotherapy After pelvic radiotherapy, up to 1 in 10 people (10%) may get pain from time to time. The pain is often due to some of the problems mentioned. Some painkillers can cause constipation and may make bowel problems worse, so it s important to ask your doctor, nurse or a continence adviser which painkillers could help you. Greasy and pale stools Some people notice that when their bowel motions (stools) become loose that they also become pale and much more smelly. The stool may float and be more difficult to flush away. There may also be a film of oil floating in the water of the lavatory pan. This is a called steatorrhoea. Steatorrhoea can be caused by: too many germs in the bowel (small bowel bacterial overgrowth) bile acid malabsorption too much fat in the diet a lack of digestive enzyme produced by the pancreas. Steatorrhoea can usually be easily treated. You need to ask to be referred to a specialist in treating bowel conditions (gastroenterologist) who should be able to help you. Very late bowel changes For a lot of men, the way their bowel works will go back to almost normal after their radiotherapy. However, some men will then develop some of the above side effects many years later (up to 15 20 years). Other bowel problems that can happen to anyone and are not due to the radiotherapy may also occur in the years after treatment. If you develop any new bowel problems after your treatment, or if any immediate side effects get worse, it s important to tell your doctor or specialist nurse quickly. Tests can then be done to find out what is causing the problem so that ways can be found to control it. It can be difficult to talk about bowel problems but doctors and nurses are used to discussing these issues so you don t need to feel embarrassed. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 9 of 11
Uncommon problems In a small number of men up to 3 in 20 (15%) very serious side effects can occur at some stage, often years after treatment. These include the following: severe ulceration of the bowel (a sore area that does not heal), which can cause watery diarrhoea that may have blood or mucus in it, and sometimes pain and cramping when you open your bowels heavy bleeding from the back passage blockage of the bowel (a bowel obstruction), which can cause sickness (vomiting), abdominal pain and constipation a hole in the bowel wall (a perforated bowel), which will cause vomiting, a very high temperature (fever) and abdominal pain. These symptoms aren t always caused by radiotherapy and could be caused by other, less serious conditions. However, if you develop any of them you should contact your doctor as soon as possible, as you may need urgent treatment. Radiotherapy can slightly increase the risk of developing cancer of the bowel within the treated areas. However, the risk of developing a new cancer is usually far outweighed by the benefits of having the radiotherapy. A colonoscopy, 5 10 years after the end of the radiotherapy, can sometimes be helpful to look for pre-cancerous changes (polyps) in the bowel. Your doctor or specialist nurse can discuss this with you. Tests for bowel problems Tests to find out what is causing a problem may include blood and stool tests, x-rays and scans. Your doctors may want to look into your bowel using a colonoscope, a thin, flexible tube with a light on the end. This is passed into the bowel and any abnormal areas can be seen. You may be referred to a bowel specialist (gastroenterologist) for tests. Some continence clinics can also carry out tests. Page 10 of 11 Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk
More information and support Bowel problems after pelvic radiotherapy If you have any questions about cancer, ask Macmillan. If you need support, ask Macmillan. Or if you just want someone to talk to, ask Macmillan. Our cancer support specialists are here for everyone living with cancer, whatever you need. Call free on 0808 808 00 00, Monday Friday, 9am 8pm www.macmillan.org.uk We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. Macmillan cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. Macmillan Cancer Support 2010. Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk Page 11 of 11