During radiotherapy to the pelvic area, inflammation of the large bowel (colon and rectum) and anus occurs.

The inflammation may cause symptoms such as:

• abdominal pain
• a sudden need to have your bowels open (urgency)
• diarrhoea
• a feeling of repeatedly needing to open the bowels (tenesmus)
• leakage/soiling (incontinence)
• wind
• passing blood or mucus when you open your bowels.

Up to 1 in 3 women (30%) who have had pelvic radiotherapy will have a small amount of bleeding from the bowel. Some women get cramps and may have pain.

Once the radiotherapy has ended, the inflammation usually settles down over a few weeks or months. But there is some permanent scarring of the bowel. In some women the way that the bowel works goes back to normal over a few weeks, but for most women there will be a permanent change. It may take six months or more for the bowel to settle down into a regular pattern.

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 women who have had pelvic radiotherapy find that the change in the way their bowel works affects their day-to-day life. For up to 1 in 3 women (33%) the change means that they need to go to the toilet very often. They are not 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 women after radiotherapy are mentioned below with ways of dealing with them.

Up to 1 in 2 women (50%) who have had pelvic radiotherapy get a loose 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 sugar) or fat.

If you want to make changes to your diet it is best 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 and they are safe to take for an unlimited time. Your specialist or a continence adviser can advise you about when to take 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 do not help, let your doctors know. The radiotherapy may have caused a condition called bile salt malabsorption or another condition called small bowel bacterial overgrowth which can be treated with specific medicines. You can get factsheets with detailed information about these conditions from the Royal Marsden Hospital. If your 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 (a gastroenterologist).

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 is important to tell your cancer specialist. It is 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 (a gastroenterologist).

Bleeding from the back passage after radiotherapy is very common. This is because the radiotherapy makes the blood vessels in the lining of the bowel more fragile. It can also happen after someone has strained to pass a large stool; has needed to open their bowels several times in a short period or if the radiotherapy has made piles (haemorrhoids) worse.

Bleeding can also be a sign of some serious conditions (including cancer) so it is important that you tell your doctors if it happens. You can then have tests to find out what is causing the bleeding. The bowel is usually examined using a flexible tube with a light and lens on the end (a flexible sigmoidoscope). You can ask your doctors if they think it is necessary for you to have this done.

If you are woken up by needing to go to the toilet to pass a loose stool or if you also have some bleeding from your bottom or weight loss, it is very important to let your doctor know, as this combination of changes is not usually caused by the radiotherapy.

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 cause a problem or to be heavy. However, people who take blood-thinning drugs such as warfarin or aspirin may find that the bleeding is heavy. You do not need to worry and do not need any treatment If the bleeding is not a problem for you and if a sigmoidoscopy shows that you have no abnormalities in the bowel.

Treatment for rectal bleeding

Treatment can be given if the bleeding is heavy or is a problem for you. You may be prescribed a drug called sucralfate, 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. Formalin given into the rectum can be helpful for some people.

Any treatment that you need will be explained to you by your doctor or specialist nurse.

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 another that they can’t get to a toilet in time or that their bowels open without any warning. For a small number of women this may happen regularly. If this happens, it can have a huge impact on your life. You may find it very embarrassing to talk about, but it is very important that you 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 so 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. Previous damage to the bowel during childbirth can make the chance of leakage higher.

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.
• 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 unrefined 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 Continence 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 is 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 Continence Foundation. The Continence Foundation 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 www.bowelcontrol.org.uk also gives information and practical advice on dealing with bowel problems.

Public toilet key You can get a key from RADAR, Incontact or the Continence Foundation which gives access to around 7,000 locked public toilets around the country. This can help you to get into toilets quickly and can help you feel less worried when you go out.

Hygiene

Pads are available from your doctor. Continence advisers, specialist nurses and Cancerbackup can advise you on caring for your skin if it gets sore.

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 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, the sigmoidoscopy will find it is not 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.

Some people find that they do not have 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. 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.

Many people diagnosed with cancer start to eat more 'healthily' which 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. Lactulose and fybogel are two medicines which often produce gas. So, if wind is a problem for you, it is 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.

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 above. Some painkillers can cause constipation and may make bowel problems worse, so it is important to ask your doctor, nurse or continence adviser which painkillers could help you.

Some people may have difficulty opening the bowels properly or feel pain when they try to open their bowels. The anal opening may feel too tight or narrow. This can be caused by a tight band of scar tissue that narrows the opening of the anus (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, your doctor will either carefully stretch (dilate) the anal opening with a special instrument, or surgically cut through the scar tissue.

For some people, the way their bowel works may go back to almost normal after their radiotherapy. However, they may then get some of the above effects many years later (up to 15–20 years). Sometimes, bowel problems occur that are not due to the radiotherapy. If you develop any new bowel problems after your treatment, or if any immediate side effects get worse, it is important to tell your doctor or specialist nurse quickly. Tests can then be done to find out what is causing the problem. Ways can then be found to control it. Doctors and nurses are used to discussing these issues so you don’t need to feel embarrassed, although it can feel difficult to talk about bowel problems. Simple things can often help.

In a small number of women – up to 1 in 20 (5%) – very serious side effects can occur at some stage, often years after treatment. These include:

• severe ulceration of the bowel (a sore area that does not heal)
• heavy bleeding from the bottom
• blockage of the bowel
• a hole in the bowel wall.

Sometimes an urgent operation is needed to sort out these problems. The radiotherapy can also slightly increase the risk of developing cancer of the bowel in the treated areas.

Tests to find out what is causing the 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 that is passed into the bowel). With the help of a light on the inside of the tube, 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.