About this ebook

This eBook is about the bowel late effects of pelvic radiotherapy. It is for anyone treated with pelvic radiotherapy who has bowel side effects that continue after treatment or begin months or years later. There is also information for carers, family members and friends.

The eBook explains how to manage the bowel late effects of pelvic radiotherapy.

This eBook does not have information about bladder late effects of pelvic radiotherapy. We have another eBook about this called Managing the bladder late effects of pelvic radiotherapy.

We hope this eBook helps you deal with some of the questions or feelings you may have.

We cannot give advice about the best treatment for you. You should talk to your doctor, who knows your medical history.

How to use this eBook

This eBook is split into sections to help you find what you need. You do not have to read it from start to finish. You can use the contents list to help you.

It is fine to skip parts of the eBook. You can always come back to them when you feel ready.

At the end of the eBook, there are details of other organisations that can help.

Quotes

In this eBook, we have included quotes from people who have had bowel late effects, which you may find helpful. These are from people who have chosen to share their story with us. To share your experience, visit macmillan.org.uk/shareyourstory

For more information

If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, 7 days a week, 8am to 8pm, or visit macmillan.org.uk

If you would prefer to speak to us in another language, interpreters are available. Please tell us, in English, the language you want to use.

If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app.

We have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. To order these, visit macmillan.org.uk/otherformats or call 0808 808 00 00.

The pelvis and late effects

The pelvis

The pelvis is the area of the body between the hip bones, in the lower part of the tummy (abdomen).

It contains the sex organs, the bladder, a section of the small bowel and the lower end of the large bowel (colon, rectum and anus). The pelvis also contains bones, lymph nodes (glands), blood vessels and nerves.

In men, and people assigned male at birth, the sex organs include the prostate gland, testicles and penis. In women, and people assigned female at birth, the sex organs include the ovaries, fallopian tubes, uterus (womb), cervix and vagina.

The pelvis

The pelvis

If you are transgender

Not all transgender (trans) people have had genital gender-affirming surgery. But if you have, you may not have all the sex organs you were born with. If you are not sure how this affects your symptoms, talk to your doctor or nurse. They can give you more information.

The bowel

The bowel is part of the digestive system. It is divided into 2 parts:

- the small bowel

- the large bowel.

The large bowel is made up of the colon, rectum and anus.

The bowel

When you swallow food, it passes down the gullet (oesophagus) to the stomach. This is where digestion begins.

The food then enters the small bowel, where nutrients and minerals are absorbed. The digested food then moves into the colon. This is where water is absorbed. The remaining waste matter (stool, or poo) is held in the rectum (back passage).

Nerves and muscles in the rectum help to hold onto stools until they are passed out of the body through the anus. The anus is the opening at the end of the large bowel. It contains a ring of muscle called the sphincter. This muscle helps to control when you empty your bowels.

What is pelvic radiotherapy?

Pelvic radiotherapy treats cancer by using high-energy x-rays to destroy cancer cells. Normal cells in the treatment area can also be damaged by radiotherapy, but usually they can repair themselves.

Radiotherapy to the pelvic area can be given in 2 ways:

- Externally (from outside the body) by a machine called a linear accelerator.

- Internally, by putting radioactive material into the tissues – this is called brachytherapy. Some people with rectal cancer may have a type of brachytherapy called Papillon treatment.

Sometimes radiotherapy is given with chemotherapy. This is called chemoradiation.

Radiotherapy that is given in combination with surgery or chemotherapy can increase the risk of developing late effects.

What are late effects?

Most people have side effects during radiotherapy treatment. Usually, these side effects gradually improve over a few weeks or months after treatment finishes.

Sometimes side effects do not go away, or they start months or years after treatment has ended.

These side effects are called:

- long-term effects – if they begin during treatment, or shortly after treatment has ended and last longer than 3 months

- late effects – if they begin months or even years later, as a delayed response to treatment.

In this information we use the term late effects to include both long-term and late effects. Late effects after pelvic radiotherapy may also be called pelvic radiation disease.

This information is about the bowel late effects of pelvic radiotherapy.

Other late effects of pelvic radiotherapy

As well as bowel changes, pelvic radiotherapy can cause other late effects. These include the following:

- Bladder problems – there may be changes affecting the lining of the ureters, the bladder, the pelvic floor muscles and the urethra which can cause symptoms.

- Lymphoedema – this is swelling caused a build-up of lymph fluid in the body tissues. It can happen if the lymphatic system has been damaged by cancer or its treatment.

- Tiredness – this is a common side effect of radiotherapy and can affect you long after treatment has ended.

- Bone changes – these can affect you long after treatment has ended.

- Changes to your sex life – these can be physical and emotional. There may also be changes affecting the male pelvis and female pelvis.

- Fertility – there may be changes that can affect getting pregnant or making someone pregnant. Pelvic radiotherapy can cause an early menopause.

- Second cancer – you may be slightly more at risk of developing a new cancer in the treated area. But the benefit of having pelvic radiotherapy outweighs the risk. Your doctor or nurse can explain this.

- Nerve changes – rarely, pelvic radiotherapy can affect the nerves in the pelvis. This is called lumbosacral plexopathy. Tell your doctor if you notice any numbness or tingling, or weakness in your legs.

We have more information on how to manage these other late effects, call the Macmillan Support Line on 0808 808 00 00 or visit macmillan.org.uk

Talking to your doctor

Some late effects may not affect your daily life very much. Others can be more difficult to live with. Help and support is available, and there are usually things that can help you cope.

Talk to your cancer doctor or specialist nurse if you have:

- side effects that do not go away

- new symptoms or problems after treatment has ended.

If you have problems with your bowel, bladder or sex life, you may feel embarrassed to talk about them. But doctors and nurses are used to speaking about these issues. If they know you are having problems, they can answer your questions and help you.

It can be frightening to have symptoms after treatment has finished. You may worry that the cancer has come back.

Your doctor or nurse can explain whether your symptoms may have been caused by the treatment you had. You may need tests to check for other causes.

Other types of expert help

Some people with late effects need help from other specialists. Your doctor or nurse can refer you to a specialist if needed. For example, you may see the following:

- A gastroenterologist – a doctor who treats problems with the digestive system.

- A colorectal surgeon – a doctor who does operations (surgery) on the large bowel.

- A continence advisor – a specialist nurse or physiotherapist who gives advice and support to people with continence problems.

A few hospitals have special clinics for people with late effects. You can ask your healthcare team whether there are any near you. Your doctor or nurse can refer you to other specialists if needed.

For more information about the help available, contact the Macmillan Support Line free on 0808 808 00 00. You may also find the organisations listed at the end of the eBook helpful.

Bowel changes after treatment

Bowel changes

Pelvic radiotherapy often causes bowel symptoms. These usually get better within a few weeks of treatment ending. But some people have late effects that start months or years after treatment.

Possible late effects to the bowel

Radiotherapy can damage the lining of the bowel and the small blood vessels in it. This may cause bleeding from the bowel.

Radiotherapy can also cause scarring (fibrosis) in the large bowel. This can make the bowel narrower, thicker and less flexible. Waste passes through it more quickly than before. Stools (poo) may be softer and looser, or liquid. The rectum may not be able to hold as much stool. You may go to the toilet more often and need to go more urgently.

Radiotherapy can also affect the muscles that help keep the stool inside the rectum. This can cause problems with bowel control and leakage of stool (bowel incontinence).

Sometimes radiotherapy can cause changes in the small bowel. You may become unable to digest some types of food (food intolerance). Or you may have diarrhoea and other symptoms because:

- the small bowel is no longer able to re-absorb bile acids used in digestion – this is called bile acid malabsorption.

- bacteria that do not usually live in the small bowel are growing there – this is called small bowel bacterial overgrowth or small intestinal bacterial overgrowth (SIBO).

Symptoms

Possible symptoms of late effects to the bowel include:

- bleeding from the back passage

- passing mucus (a clear, sticky substance)

- cramps or spasms in the bowel, which may be painful

- feeling that you need to pass stools even when your bowel is empty – this is called tenesmus

- not being able to empty the bowel completely

- diarrhoea or constipation

- needing to rush to empty your bowels (urgency)

- problems controlling your bowel, causing leakage or soiling (bowel incontinence)

- passing a lot of wind, or losing control of passing wind.

Some people have mild symptoms that do not cause too many problems. They may only notice small changes, such as having to go to the toilet twice a day instead of once. For other people, bowel changes have a much bigger impact and can affect daily life. Bowel symptoms can affect your appetite or weight. Talk to your doctor if you notice that you are losing weight. We have more information about this in our booklet The building-up diet.

Get symptoms checked

It is important that you get ongoing bowel symptoms checked by your doctor.

These symptoms might not be caused your radiotherapy treatment. They can be a sign of a more serious problem. It is important to find out the cause as soon as possible.

There are 4 symptoms you must always talk to your doctor about:

- passing blood from your back passage

- waking up from sleep to empty your bowels

- needing to rush to empty your bowels

- bowel incontinence.

Bleeding from the rectum

Bleeding from the back passage (rectum) is common after pelvic radiotherapy. Treatment can damage the lining of the bowel. As the bowel heals, it makes new, small blood vessels. These are on the surface of the bowel lining, rather than deep within the bowel wall. Because these small blood vessels are on the bowel surface, they sometimes break and bleed. This can happen when a person strains to pass a bowel movement, or has slightly hard stools (poo).

Most people who have this side effect only notice bleeding occasionally. For a few people, bleeding can be heavy and needs treatment. These changes in the bowel lining often get better over time. But this can take 5 to 10 years, so you may see specialist for assessment in the meantime.

Tests

Bleeding can also be a sign of other problems such as piles (haemorrhoids) or straining on the toilet. Even if you think you know the cause, always tell your doctor or specialist nurse if you have any bleeding from the back passage. It is important to find out the cause and make sure there are not any serious problems.

Your doctor will examine your back passage. They may also refer you to have a camera test, to look at the inside of your rectum (a sigmoidoscopy or colonoscopy). This is where a doctor or nurse passes a scope (a thin tube with a light and tiny camera on the end) into the bowel to look for any abnormal areas.

Treatment for bleeding caused by radiotherapy

If the bleeding is mild and not affecting your daily life, you will probably not need treatment. Your specialist will give you advice about your bowel habits and how to avoid constipation. This will help reduce bleeding.

If bleeding is affecting your daily life, or if you become anaemic (have a low number of red blood cells), you are likely to need treatment. Your doctor or specialist nurse will explain more about your treatment options and give you more information.

If you are taking blood-thinning drugs, your dose may be reduced and monitored.

Bleeding can sometimes be reduced with a drug called sucralfate. This drug coats the lining of the bowel. This reduces inflammation and encourages healing. If the blood is bright red, you have the drug as an enema. This means the drug is gently given as a liquid into your back passage through a short tube. If the blood is darker, you take the drug by mouth as a tablet. It is important to avoid getting constipated when you are being treated with sucralfate.

Other treatments that may reduce bleeding include the following.

Thermal ablation

This treatment uses heat to seal areas that are bleeding. It is given during an endoscopy, where a doctor or nurse passes a thin, flexible tube with a light on the end into your back passage. Different types of thermal ablation include radiofrequency ablation (RFA) and argon plasma coagulation (APC). There is a risk that thermal ablation can cause complications, such as serious tissue damage. Your doctor will discuss this with you.

Formalin

This drug seals bleeding blood vessels. A doctor or nurse gives it to you during an endoscopy. There is a risk that formalin can cause complications, such as serious tissue damage. Your doctor will discuss this with you.

PuraStat®

This gel forms a coating over bleeding areas. A doctor or nurse gives it to you during an endoscopy. Your doctor can give you more information about this treatment.

Hyperbaric oxygen therapy (HBO)

During HBO you go into a special room or chamber and breathe in pure oxygen. The oxygen travels in your blood. The increased oxygen level in your blood can help new blood vessels to grow. This may help areas affected by radiotherapy heal. Treatment takes up to 8 weeks. HBO is not widely available and is not always available on the NHS. We have more information about HBO at macmillan.org.uk

Getting help with bowel control problems

If you have a bowel control problem, you may have:

- difficulty controlling when and how often you pass stools or wind

- problems controlling your bowel, causing leakage or soiling (bowel incontinence), cramps, or bloating

- diarrhoea or constipation

- difficulty emptying your bowel completely.

Not feeling in control of your bowel can be stressful, particularly when you are away from home. Although you might find it difficult to talk about bowel control problems, it is important to tell your doctor or specialist nurse. There are many things that they can do to help.

‘My bowel does not function as it used to and I have had many accidents. But over ime I have worked out what foods I should avoid and what foods I should eat. I have also been prescribed Imodium to help.’ Hina

Tests

Your doctor or nurse will usually ask about your bowel problems and things that affect your symptoms. It is important that they properly assess your situation. The right treatments for bowel control problems depend on your symptoms and what is causing them.

You may have some of the following tests:

- blood and stool tests

- x-rays and scans

- camera (endoscopy) tests such as a colonoscopy or sigmoidoscopy – this is where a doctor or nurse passes a scope (a thin tube with a light and tiny camera on the end) into the bowel to look for any abnormal areas

- breath tests – this is where doctors use samples of your breath to investigate symptoms such as diarrhoea or discomfort in your tummy (abdomen).

It may be helpful to record your bowel habits and what you eat for a week before you go to your appointment. You can download our food and symptom diary to do this. Your doctor or nurse will usually ask you about:

- your bowel habits and how they have changed

- what your stools look like

- your diet and lifestyle

- any medicines you take

- how the bowel problems are affecting your daily life.

This may include suggesting changes to your diet, or using medicines to regulate your bowel. They may give you advice about strengthening the muscles used for bowel control.

Improving bowel control

Your doctor or nurse will probably have helpful suggestions. The most common ways of improving bowel control include:

- changes to your diet

- drugs to regulate your bowel

- exercising and strengthening the muscles used for bowel control.

If your symptoms do not improve, you can ask your GP to refer you to a continence advisor, or a doctor who treats problems with the digestive system (gastroenterologist).

Diet

It is important to try to eat at regular times. This helps to encourage a regular bowel pattern. Skipping meals may make your symptoms worse.

You may notice certain foods make your stools loose or increase wind. You may want to try eating less of these foods, without cutting them out altogether. It is best to do this with the support of a dietitian. This is because it is important to continue to eat a wide range of different food types.

Your doctor can refer you to a dietitian for expert advice on managing your diet. The dietitian may ask you to keep a food and symptom diary. It lets them see the types of food you usually eat and what changes may help your symptoms.

Fluids

Try to drink at least 1 to 2 litres (2 to 3½ pints) of fluids a day, unless your healthcare team tell you differently. Water is best. Drink smaller amounts through the day so that you do not drink lots of fluids with meals. Some types of drinks can make bowel problems worse. You may want to limit drinking:

- fizzy drinks

- caffeinated drinks (like coffee, tea or cola)

- alcohol

- sugar-free drinks that contain artificial sweeteners.

Fibre

Changing the amount of fibre in your diet may help with bowel problems. Your doctor, nurse or dietitian will give you advice about the type of fibre you need and how much you should have. This depends on the treatment you had and the type of bowel problem.

There are 2 types of fibre:

- Insoluble fibre helps with managing constipation. It can also help with other bowel problems. You can get insoluble fibre from wholegrain bread and cereals, vegetables and fruit skins. It is also in bran and seeds.

- Soluble fibre helps bulk up and slow down bowel movements, so it may help improve diarrhoea or soft stools. You can get soluble fibre from oats and bananas, and from apples and pears with their skins removed. It is important to remove the skins, because they contain insoluble fibre.

If you are adding fibre to your diet, do it slowly. This gives your body time to adjust. Start with small amounts and slowly increase the amount when you are ready. Fibre absorbs fluid, so make sure you also drink more water. This helps the stool stay soft and move through the bowel easily.

Adding more fibre is not right for everyone. Following the 5-a-day plan for fruit and vegetables may not always be appropriate either. Your doctor, nurse or dietitian may give you advice about blending, slow cooking and peeling fruit and vegetables to reduce the amount of fibre you have.

Soluble fibre supplements

People with bowel control problems are often prescribed soluble fibre supplements, such as Normacol® or Fybogel®. They work by absorbing water and expanding to fill the bowel. This makes the stools bulkier and easier to push out. But some people find Fybogel® makes the bowel produce more wind.

If you are taking fibre supplements, make sure you drink plenty of fluids. You should drink at least 2 litres (3½ pints) of fluids every day.

Food intolerance

Sometimes radiotherapy can affect how well your bowel copes with certain food types, such as lactose or fructose. Lactose is found in milk and some other dairy products. Fructose is found in sugar and fruit.

Symptoms of food intolerance may include:

- tummy cramps

- feeling bloated

- having more wind after eating a particular food.

If you think you may have a food intolerance, ask your GP to refer you to a gastroenterologist.

Food intolerance may improve over time, so it is worth trying foods again rather than avoiding them for long periods of time.

Drugs

Anti-diarrhoea drugs

If you have urgency, loose stools, diarrhoea or bowel incontinence, anti-diarrhoea drugs may help. It is important to speak to a doctor or specialist nurse before taking any medicines.

The most commonly used treatment is loperamide. It slows down your bowel, making the stools more solid and less frequent. Taking loperamide regularly can work very well for some people. It usually works best when taken about 20 to 30 minutes before eating a meal.

It is safe to take loperamide for as long as you need it. But you should discuss this with your doctor.

The dose of loperamide you take may need to be adjusted until you find what works best for you. Your doctor may recommend starting with a low dose and increasing this until your symptoms are controlled. Loperamide is available as a syrup, which allows you to make small changes to the dose as needed.

Sometimes loperamide can cause cramps. If this happens, taking a lower dose may help.

There are other types of anti-diarrhoea medicine, such as codeine phosphate or diphenoxylate (Lomotil®). Your doctor or a continence adviser can give you advice.

Drugs that can increase bowel symptoms

You may be taking medicines that can make bowel symptoms worse. For example:

- magnesium in antacids – this treatment for heartburn may cause diarrhoea

- proton pump inhibitors such as omeprazole (Losec®) may cause wind and diarrhoea

- laxatives such as Lactulose® and Fybogel® may cause wind and diarrhoea

- metoclopramide – this anti-sickness drug may cause diarrhoea

- metformin – this tablet to treat diabetes may cause diarrhoea, particularly when you have just started taking it

- beta-blockers – these tablets to treat high blood pressure and some heart problems may cause diarrhoea.

If you think a drug you are taking might be making your symptoms worse, tell your doctor. They may be able to prescribe a different drug that may affect you less.

Drugs to treat constipation

If you have problems with constipation or difficulty emptying your bowel completely, you may be given one of the following treatments:

- Soluble fibre supplements, such as Fybogel® or Normacol®.

- Suppositories – you put these into your back passage or stoma. As they dissolve, they release a lubricant. This encourages the bowel to empty. They usually take about 10 to 30 minutes to work. It may be easier to use them at a time when you are able to stay near a toilet for a while after inserting them. You may not need to use them every day. Ask your doctor or nurse if you want to try using them at night so they have longer to work.

- Enemas – these contain a small amount of gel or liquid that you squeeze into the lower bowel. This stimulates the bowel to empty.

Drugs that can cause constipation

Your doctor can check whether you are taking any drugs that can cause constipation. They may be able to prescribe a different drug.

Medicines that may cause constipation include:

- opioid painkillers, such as codeine or morphine

- ondansetron, which is an anti-sickness drug

- iron tablets

- loperamide or other anti-diarrhoea drugs.

Smoking or vaping

If you have problems with urgency, loose stools or bowel incontinence, smoking or vaping may make things worse. This is because nicotine stimulates the bowel. Talk to your doctor about ways to stop smoking or smoke less.

Exercises for bowel control

Exercises to strengthen the muscles used in bowel control are called pelvic floor exercises. They may help with:

- urgency

- bowel incontinence

- difficulty emptying your bowel completely

- wind.

Pelvic floor exercises help strengthen the muscles that support your bladder, rectum (back passage) and sex organs. These muscles help with bladder and bowel control.

You can do pelvic floor exercises while you are standing, sitting, or lying down. It is easier to start doing them lying down with your knees bent up. When you get more confident at doing them, you can then try sitting or standing. When done correctly, no one will know you are doing them.

You squeeze and relax the muscles around your anus, as if you are trying to stop yourself passing wind. Then squeeze the muscles as if you are trying to stop a flow of urine halfway through. Try not to squeeze your buttocks, thighs and tummy muscles or hold your breath. Now try to do both exercises at the same time and hold. When you can do it, start holding for longer.

You need to practise both strong, long squeezes and short squeezes. For example, try to do:

- 10 slow squeezes lasting 10 seconds each with a 4 second rest between each one

- 10 fast squeezes at a speed of 1 per second.

Some people find it difficult to know which muscles to squeeze. If you are unsure or your symptoms are not getting better, ask your doctor to refer you to a specialist. They can check you are doing the exercises properly and give you advice.

It takes at least 3 months to strengthen these muscles. You need to do the exercises regularly and you need to keep doing them. Aim to do the sets of slow and quick squeezes 3 times every day. Try doing them at the same times each day to get into a routine. It can be helpful to set reminders on your mobile phone or use a pelvic floor exercise app.

Bowel retraining

Some bowel control problems can make it difficult to predict when you will need a toilet. This can be very stressful. You may worry that you will not be able to ‘hold on’. Or you may be checking all the time for signs that you need to go.

A continence advisor may suggest a bowel retraining programme to help you feel more in control. This teaches you ways to:

- resist the urge to go straight away

- get your bowel habits into a regular, predictable pattern

- manage any anxiety you have about bowel control.

Bowel retraining may also involve other methods such as anti-diarrhoea medicines and pelvic floor exercises.

Toilet habits

If you have ongoing problems with constipation or difficulty emptying your bowel, good toilet habits can help.

Toilet routine

Most people find the best time to empty their bowel is about 30 minutes after a meal. But this can vary. You may already know what time works best for you. It is important not to push hard to try to pass a stool. This can weaken your pelvic floor muscles and may cause problems with bowel control in the future.

If you have to wait for a long time on the toilet, you may be going to the toilet too soon. Or it may be a sign that you are constipated. Try not to go to the toilet until you have a strong urge to pass a stool. And try not to sit on the toilet for more than 20 minutes.

‘I always have to make a note of where the toilets are, when out and about, as my muscles are damaged and I now don’t have particularly good control in the bowel department. I am managing to live with this though as it is mostly the first movement of the day that I can’t control.’ Hina

Toilet posture

Sitting in the right position on the toilet can help you to empty your bowels. Lean forward a little and rest your elbows on your knees. Use a small footstool to raise your feet off the floor by about 20cm (8 inches). This will make your knees higher than your hips. Do not strain or hold your breath. Straining or holding your breath makes the muscles tighten, instead of relaxing them so you can pass stool. You may find using a relaxed breathing technique helps.

The correct position for emptying the bowel

If you have had recent hip surgery, do not use this position. Always check with your doctor first.

Diarrhoea

Many people find changing their diet and taking anti-diarrhoea drugs stops the diarrhoea. We have more information about managing diarrhoea by making changes to your diet or taking anti-diarrhoea drugs. But if this does not help, ask your doctor to refer you to a gastroenterologist. Lots of different things can cause diarrhoea, and a gastroenterologist will be able to do a full assessment.

After bowel cancer treatment, particularly pelvic radiotherapy, some people have diarrhoea caused by changes to the small bowel, such as:

- bile acid malabsorption (also called bile acid diarrhoea)

- small bowel bacterial overgrowth

- exocrine pancreatic insufficiency (EPI).

Bile acid malabsorption

Bile acids are made in the liver and go to the small bowel when you eat to help digest fats. When the bile acids reach the far end of the small bowel, they are absorbed back into the body.

Sometimes, radiotherapy for bowel cancer damages the small bowel. Or, part of the small bowel may be removed during surgery. If the small bowel cannot re-absorb the bile acids, this can cause watery diarrhoea, painful cramping and bloating. This is called bile acid malabsorption or bile acid diarrhoea.

Your doctor may advise you to start the following treatments, to see if symptoms improve:

- Eating a low-fat diet – a dietitian will help you do this in a balanced way.

- Taking anti-diarrhoea drugs.

- Taking drugs that reduce the effect of bile acids on the bowel – the drug most commonly used is colestyramine (Questran®, Questran Light®). It is a powder that you mix with water or fruit juice. If colestyramine does not work, your specialist may prescribe a tablet called colesevelam (Cholestagel®).

A scan called a SeHCAT scan can help diagnose bile acid malabsorption. Your doctor can explain more about this test. SeHCAT scans are not widely available and may not be needed.

Most people with bile acid malabsorption do not absorb enough vitamins and need to take vitamin supplements. Your doctor can talk to your more about this.

Small bowel bacterial overgrowth

The large bowel contains lots of healthy or ‘good’ bacteria, which help digest food. But a healthy small bowel contains almost no bacteria. After pelvic radiotherapy, sometimes this changes and bacteria are found in the small bowel. This is called small bowel bacterial overgrowth, or SIBO. It can cause symptoms, including:

- diarrhoea

- wind

- bloating

- constipation

- feeling sick

- vomiting

- bad breath.

A breath test can help to find out whether you have small bowel bacterial overgrowth. You have the test as an outpatient. Samples of your breath are tested for signs of bacteria in your small bowel.

Small bowel bacterial overgrowth is usually treated with antibiotics.

Exocrine pancreatic insufficiency (EPI)

This condition sometimes develops in people who have had pelvic radiotherapy to an area of the body that includes para-aortic lymph nodes. These are close to the pancreas. This type of radiotherapy is sometimes used to cervical cancer or womb cancer. We have more information in our booklets Understanding cervical cancer and Understanding womb (endometrial) cancer.

The pancreas makes proteins called enzymes. These help to digest food. EPI develops when the pancreas does not make enough enzymes to digest food properly. This can mean you are not getting enough nutrients. It can cause weight loss. Symptoms of EPI include:

- diarrhoea

- painful cramps

- stools (poo) that are pale and difficult to flush.

If your doctor thinks you might have EPI, they can arrange for you to have a stool test (faecal elastase test) to find out. If you have EPI, you will need a supplement to replace the enzymes. There are several different brands available. Supplements are made from pork. There are no vegetarian alternatives.

The most commonly used supplement is a tablet called Creon®. It has been approved for use by Jewish patients by the Chief Rabbi. Previous rulings by Islamic scholars suggest that Muslims may use pork-based medicines if there is no alternative. If you have concerns about this, speak to your religious leader.

You will need to take the supplement with everything you eat or drink. Most people with pancreatic insufficiency do not absorb enough vitamins and minerals. You may also need a multi-vitamin and mineral supplements. A dietitian will be able to help you use the tablets correctly, as it is important to take enough of the supplements.

Constipation

If you have problems with constipation after treatment, the following tips may help:

- include more fibre in your diet

- drink at least 1 to 2 litres (2 to 3½ pints) of fluid a day

- do daily exercise, such as walking

- get into a toilet routine

- use the correct toilet posture (sit on the toilet in the right position)

- check with your doctor if you are taking medicines that can cause constipation

- take medicines to treat constipation.

If the constipation gets worse or you have severe tummy (abdominal) pain, get advice from your doctor or nurse.

Tenesmus

Tenesmus is the feeling that you need to go to the toilet but your bowel is empty. It can involve straining, pain and cramping. It can be caused by cramps (spasms) in the muscles that stimulate the bowel.

Tell your doctor or nurse if you have these symptoms. Tenesmus can be caused by changes to the rectum after radiotherapy or surgery. Sometimes it can be a symptom of another problem like constipation, infection or a non-cancerous growth (a polyp) or cancer in the bowel.

If you have tenesmus, your doctor will examine your back passage and may arrange for you to have a camera test called a colonoscopy or flexible sigmoidoscopy to look at the bowel.

If your symptoms are a late effect of bowel cancer treatment, your doctor may suggest:

- pelvic floor exercises

- a toilet routine

- using the correct toilet posture (sitting on the toilet in the right position)

- taking soluble fibre to bulk up the stool (poo), or a fibre supplement such as Normacol®

- low doses of certain anti-depressant drugs to reduce the sensitivity of the rectum.

Wind

If you have problems with wind after bowel cancer treatment, the following tips may help:

- Cut down on foods and drinks that are causing wind.

- Eat your meals at the same times each day.

- Do not eat and drink at the same time.

- Use pelvic floor exercises to strengthen the muscles used for bowel control.

- Ask your doctor for advice if you take medicines that cause wind, such as Lactulose® or Fybogel®.

- Try taking peppermint oil or charcoal tablets, or eating live yoghurts.

Tell your doctor if this symptom is a problem. Sometimes other things may be making wind worse. For example, constipation or bowel conditions, such as diverticular disease can make wind worse. Wind can also be a symptom of a food intolerance, or a condition called small bowel bacterial overgrowth after radiotherapy.

Sore or itchy skin

Ongoing diarrhoea or leaking (incontinence) from the bowel can make the skin around the anus sore. Sometimes radiotherapy for rectal or anal cancer can also make this area of skin sore, red or broken.

If your skin is sore or passing a bowel movement is painful, speak to your doctor or nurse. They can give you advice about looking after your skin and may give you creams or ointments to use. They can also check your skin for signs of other problems such as piles (haemorrhoids) or fissures.

Anal fissure

After radiotherapy, the skin of the anus may become narrower and less stretchy. Sometimes a split develops in the skin of the anus. This is called an anal fissure. It can cause a sharp, intense pain when you pass a stool (poo).

Your doctor can usually prescribe creams to apply to the area that help it heal. It is important to avoid getting constipated, because this can make a fissure worse. Your doctor may prescribe a laxative to make it easier for you to go to the toilet.

If the fissure does not get better, your doctor may advise treating it with injections of botulinum toxin A (Botox®). These are given into the tissue that lines the anus. Botox® causes the muscle to relax, reducing the pain and increasing the blood flow which helps the fissure to heal.

Some people may need a minor operation to make a small cut in the muscle around the anus. This releases the tension in the muscle and allows the fissure to heal. You usually have this operation under a general anaesthetic, as a day patient.

Uncommon and rare late effects

Rarely, people may have the following problems because of pelvic radiotherapy.

Anal stricture

Radiotherapy may cause a tight band of scar tissue at the opening of the back passage (anus). This makes the anus narrower. It is called an anal stricture. It can cause difficulty and pain when you try to empty your bowels.

If it is mild, your doctor will advise you to take a stool-softening laxative or fibre supplement. This will make it easier to go to the toilet, which will help stretch the stricture.

If the narrowing is more severe, your doctor can refer you to a specialist to talk about treatments that might help. You may be able to have a procedure to stretch the opening. This is called dilatation. Or you may have an operation under general anaesthetic to cut through the scar tissue. Your doctor or specialist nurse can explain more about these treatments.

Bowel blockage

Signs of a blockage (obstruction) in the bowel may include:

- severe pain or cramping in your tummy (abdomen)

- sickness (vomiting)

- bloating

- loud gurgling sounds from the bowel

- tummy swelling

- inability to pass wind

- constipation.

If you have severe pain, you should contact a doctor straight away. You may need tests such as x-rays or a CT scan to check what is causing the pain. If your symptoms are caused by a blocked bowel, you may need urgent treatment.

Treating a blocked bowel

Often the bowel is only partly blocked and gets better (unkinks) after being rested for a time. This may mean:

- a short stay in hospital

- not eating for a day or so and having fluids through a drip into a vein

- having a liquid or low-residue diet.

A low-residue diet contains very low amounts of fibre. This means it is more easily broken down into smaller particles by the digestive system. Your nurse or doctor will explain this diet in more detail if you need to follow it for a short time.

If the bowel is completely blocked, you may need an urgent operation to relieve it.

Hole in the bowel wall

Very rarely, a hole may develop in the bowel wall. This is called a perforated bowel. It can make you feel suddenly unwell.

This is usually treated straight away with an operation to remove the affected part of the bowel.

Fistula

A fistula is an opening that forms between areas of the body that are not usually connected. Rarely after pelvic radiotherapy or surgery for rectal or anal cancer, an opening can develop between:

- the rectum and vagina

- the rectum and bladder or urethra.

Sometimes a fistula closes on its own. It can then be managed with treatment to control symptoms. If this does not happen, it may be possible to have an operation to close it. We have more information about fistulas on our website.

Coping with bowel late effects

Coping with bowel changes

There are things you can do that will help bowel symptoms after treatment.

Keep to a healthy weight

Cancer treatment can cause changes in weight. Being overweight puts pressure on your pelvic floor muscles. It is important to keep to a healthy weight if you have bladder or bowel late effects. Your GP can advise you on the ideal weight for your height.

We have more information in our booklet Managing weight gain after cancer treatment.

Keep physically active

Keeping active will help you manage your weight and avoid getting constipated. This is important to help look after your pelvic floor muscles. Exercise also helps you feel better and can reduce stress.

If certain exercises cause leakage or soiling, you may want to use a product, such as a pad, during that time.

We have more information about keeping active in our booklet Physical activity and cancer.

Avoid constipation

Avoiding constipation can help protect your pelvic floor muscles.

To avoid constipation, you can try the following things:

- choose foods that reduce constipation

- make sure you are sitting in the correct position to empty your bowels and have a good toilet routine

- drink plenty of fluids

- keep active.

Manage stress

Anxiety and stressful situations can make bowel symptoms worse.

Learning to relax may help improve some of your symptoms. Some continence clinics and support groups teach stress management. Your doctor or specialist nurse can tell you about relaxation classes in your area.

Relaxation CDs are available from bookshops and some health shops. You can also download apps to your mobile phone or tablet, or relaxation podcasts from the internet.

Some people find that complementary therapies such as massage or yoga help them feel less stressed. We have more information in our booklet Cancer and complementary therapies. For details of what is available in your area, call our cancer support specialists on 0808 808 00 00.

Get support

It is important to tell your doctor or nurse about any problems you have. They are used to dealing with these issues and can refer you to a counsellor or specialist if you need more help.

Support groups, online community sites and specialist organisations can also provide invaluable support. They are a good way of meeting people who have been through similar situations. You can share experiences and solutions with each other. Partners, family members and close friends can also help you cope with your feelings.

You can access the Macmillan Online Community at macmillan.org.uk/community

Going out

If you have problems with bowel control, you may feel worried about going out, especially to somewhere new. Planning ahead so that you are prepared can help you feel more confident.

Access to toilets

If you are going somewhere new, it is a good idea to find out where the toilets are before you go. The Great British Toilet map can help you to find public toilets by postcode or through the location on your mobile phone. You can check the map at toiletmap.org.uk There are also toilet apps for mobile phones, that can find the toilets nearest to you.

Macmillan has a free toilet card you can use. It may help you access a toilet more quickly when you are out. You can use it in places such as shops and pubs. The card says you have a medical condition that means you need urgent access to a toilet. You can get one by calling the Macmillan Support Line on 0808 808 00 00 and speaking to a cancer support specialist. Or you can order it at be.macmillan.org.uk

You can also use disabled toilets. These often have more privacy. They have a wash basin and more space if you need to change. The National Key Scheme for Toilets offers access to about 9,000 locked public toilets across the UK. You can buy a key online from places such as Disability Rights UK. They also have a guide that explains where the toilets are.

Take a bag with supplies

Pack a bag of the things you may need when you go out. This will help you feel more confident. You may want to include:

- wet wipes or tissues

- a non-oil barrier cream

- pads and pants

- a change of clothes

- a sealable bag

- anti-diarrhoea tablets (if you have problems with diarrhoea)

- your Macmillan toilet card.

Specialist products for leakage or soiling

If you have problems with leakage or soiling (incontinence), there are different products that can help. These can help you feel more confident and protect your clothes. A continence adviser can help you choose products that suit your needs.

You can buy pads for mild to moderate incontinence in most supermarkets and pharmacies and online. If these are not absorbent enough, you can get different pads from your continence adviser. They can also explain what is available to you on the NHS. This will depend on where you live. The Bladder and Bowel Community also has information about different products.

Problems with leakage or soiling can mean you have extra expenses. Call Macmillan on 0808 808 00 00 to find out more about ways to help cover the cost.

Disposable pads and underwear

There are different types of pad you can wear during the day and at night. Pads and pants with charcoal linings may help to reduce smell from leakage or wind. There are also different types of pad you can use to cover your bed or chairs.

Anal plugs and inserts

Peristeen® anal plugs are inserted into the rectum to stop bowel leakage. They are made from soft foam covered with a film. When it is in place, the film dissolves and it swells up to fill the gap. They can stay in place for up to 12 hours. There is a cord attached to the plug, so you can remove it when you are ready to go to the toilet. Some people find anal plugs uncomfortable to begin with. But most people get used to them after using them a few times.

Renew® anal inserts are made from soft silicone and are placed in the anus. There are 2 discs at either end. The top disc is inserted using an applicator and the lower disc sits outside the anus to stop the insert from moving further in. They stop any leakage until you are ready to go to the toilet. Then the insert either gets pushed out when you have a bowel movement or can be removed before a bowel movement.

Your continence adviser can help you choose products that suit your needs and show you how to use them.

Protecting your skin

If you have problems with leaking (incontinence) from your bladder or bowel, it can make the skin in that area sore.

You can protect your skin by keeping it clean and dry. There are lots of products available to help you. Your continence adviser can give you more information.

Here are some suggestions to help keep your skin clean and dry:

- Use a skin cleanser instead of soap and water.

- Try not to scratch if your skin is itchy, but if you do sometimes scratch it is best to keep your nails short to help prevent damage to your skin.

- Ask your GP, nurse or continence adviser about moisturisers and barrier creams or sprays to protect your skin.

- Use absorbent pads.

- Wear cotton underwear, as it lets your skin breathe more than other materials.

Your feelings and relationships

Your feelings

It is not unusual to find it difficult to cope with some of your feelings. This can happen months or even years after treatment, especially if you have late effects. But the right support can make it easier to cope. Sharing your feelings with someone else may help you find that support. Try speaking to your doctor, family or friends if you are struggling.

Feeling alone

Some late effects can feel embarrassing or difficult to talk about. This can make you feel isolated, especially if you do not know anyone else with the same problems. You may also feel more alone as you begin to have less contact with the hospital when your treatment ends. Tell your doctor, family or friends if you are feeling this way. They may be able to suggest things that can help, or know where you can get more support.

Uncertainty

You may worry that some of your late effects are a sign of the cancer coming back. After cancer treatment, it is common to feel anxious about aches and pains that you would not have worried about before. It can help to know more about your late effects and where you can get support when you are worried.

Anger

It is natural to feel angry at times, especially if you are coping with the late effects of treatment. Do not feel bad about feeling this way. It can help to tell people you trust when you feel angry. Keeping strong feelings to yourself may make you feel depressed. You can talk to your doctor about seeing a counsellor.

Depression

Coping with the late effects of treatment can be physically and emotionally demanding. This can sometimes make people feel depressed. Signs of depression include:

- feeling low in mood

- having no interest in, or enjoyment from, the things you would normally enjoy

- feeling helpless or hopeless.

If you think you may be depressed, talk to your doctor. They can refer you to a counsellor or psychologist or prescribe a course of anti-depressant drugs for you.

Relationships

Cancer is stressful, and this may change your relationships in different ways. The impact on your relationships is likely to depend on many factors. These include how the cancer and its treatment have affected your daily life and how strong your relationships were before you were diagnosed. There is no normal way for a relationship to be after cancer treatment. You may feel:

- the experience of cancer improved and strengthened your relationships with people close to you

- that you would not have coped as well without the support you had from family and friends

- that your family and friends do not understand if you are not feeling positive about getting back to normal life

- that your family and friends do not realise how much the effects of treatment impact your life.

Talking openly about how you are feeling can help those close to you understand you better and give you the support you need.

Getting help and support

Not everyone has people close to them who they can talk to about the cancer and its treatment. You can talk to other people facing similar challenges by joining a support group or by using social networking sites. Your specialist nurse will have details of cancer support groups and counselling services in your area. Or you can call us on 0808 808 00 00 to speak to one of our cancer support specialists. They will be able to help you find support, or they can just listen.

At your hospital follow-up appointments, your specialist will assess your late effects and how they are being managed. They will also check that there are no signs of the cancer coming back.

After having cancer, it is natural for your body to feel different, and for you to feel differently about your body. If you are worried about symptoms or are struggling with your emotions, tell your doctor or specialist nurse as soon as possible. You do not have to wait until your next check-up to contact your doctor or any other health professional.

Complementary therapies

Complementary therapies are usually used alongside conventional medical treatments. There are different types of complementary therapy, including acupuncture, aromatherapy and massage.

Complementary therapies may:

- help you feel better

- reduce stress and anxiety

- improve some side effects of treatment.

Relaxation, counselling and psychological support are available at many cancer hospitals. Complementary therapies are sometimes also available through cancer support groups or your GP. Many complementary therapists have private practices.

There are lots of different therapies. Some people find it helpful to use a combination of therapies. Choose a therapy that feels right for you and make sure you use a registered practitioner. Before using a complementary therapy, talk to your healthcare team and find out if it could have any harmful effects for you.

We have more information in our booklet Cancer and complementary therapies that you may find useful.

Work and finances

Work

If you have late effects after cancer treatment, this may make working more difficult. Some people may decide to change the type of work they do or the way they work. Others may not be able to work anymore because of the effects of cancer on their health.

Our booklets Work and cancer, Working while caring for someone with cancer and Self-employment and cancer have information that may be helpful if you are making decisions about this. There is also lots more information at macmillan.org.uk/work

Employment rights

If you have, or have ever had, cancer, the law considers this as a disability. This means you cannot be treated less favourably than people who do not have cancer because you have cancer, or for reasons connected to the cancer. That would be discrimination.

The law also says your employer must make reasonable adjustments (changes) to your workplace and their work practices to help you stay at work or return to work. For example, changes that might help with late effects such as tiredness, bowel changes or bladder changes could include:

- allowing some flexibility in working hours

- changing where you work – for example, moving you to a workstation nearer to a toilet

- allowing extra breaks to help you cope with tiredness

- changing your duties so you do not do physically challenging activities

- letting you work from home

- providing facilities that are appropriate for your disability.

If you live in England, Scotland or Wales, you are protected by the Equality Act 2010. If you live in Northern Ireland, you are protected by the Disability Discrimination Act 1995.

Our booklet Your rights at work when you are affected by cancer has more information.

Financial help and benefits

When you are affected by cancer, you might need help with extra costs. Or you might need financial support if you have to stop working.

Statutory Sick Pay

If you work for an employer and take time off sick, you may be able to get Statutory Sick Pay. Your employer will pay this for up to 28 weeks.

Benefits

Benefits are payments from the government to people who need financial help. You can find out more about benefits and apply for them online. Go to gov.uk if you live in England, Wales or Scotland, or nidirect.gov.uk if you live in Northern Ireland.

Here are some benefits that you might be able to get if you are affected by cancer.

Employment and Support Allowance (ESA)

This benefit is for people under State Pension age who have an illness or disability that affects how much they can work. There are different types of ESA, so it is a good idea to speak to a welfare rights adviser to see if you can make a claim.

Universal Credit

Universal Credit (UC) is a benefit for people under State Pension age who are either:

- out of work – for example, because of an illness or because they are caring for someone

- on a low income.

UC can include money for basic living costs, looking after children and housing.

Personal Independence Payment

This benefit is for people aged 16 to State Pension age who have problems moving around or looking after themselves. You must have had these problems for 3 months and expect them to last for at least 9 months, unless you are terminally ill.

Attendance Allowance

This benefit is for people at or over State Pension age who have problems looking after themselves because of an illness or disability. This could mean problems getting out of bed, having a bath or getting dressed. You must have had these problems for at least 6 months, unless you are terminally ill.

Special rules

If you are terminally ill, you can apply for some benefits using a fast-track process called special rules. You can apply if your doctor thinks you may be reasonably expected to live for less than 6 months. Your claim will be dealt with quickly and you will get the benefit you applied for at the highest rate. It does not matter if you live longer than 6 months. Your doctor or specialist nurse will need to fill out a form for you.

Help for carers

Carer’s Allowance is a weekly benefit to help people who look after someone with a lot of care needs. If you do not qualify for it, you may still be able to apply for Carer’s Credit.

Carer’s Credit helps prevent gaps in your National Insurance record if you have to stop working while you are caring for someone else. You do not get money, but it protects your right to a State Pension later in life.

Macmillan Grants

Macmillan Grants are small, mostly one-off payments to help people with the extra costs cancer can cause. They are for people who have a low level of income and savings.

If you need things like extra clothing, help paying heating bills or even a relaxing holiday, you may be able to get a Macmillan Grant.

How much you get will depend on your situation and needs. A grant from Macmillan does not normally affect the benefits you are entitled to. It is an extra bit of help, not a replacement for other support.

Insurance

If you have, or have had, cancer, you may find it hard to get certain types of insurance. This includes life and travel insurance.

A cancer diagnosis might also mean that you can get a payout from an insurance scheme that you already have.

If you are thinking about buying insurance or making a claim, one of our financial guides can help. You can call them on 0808 808 00 00.

We have more information in our booklet Travel and cancer. Our Online Community forum on Travel insurance may also be helpful. Visit macmillan.org.uk/travelinsurancegroup

More information

The benefits system and other types of financial support can be hard to understand. Macmillan has experienced welfare rights advisers and financial guides. You can speak to one by calling the Macmillan Support Line on 0808 808 00 00.

You can also get information about benefits and other types of financial help from Citizens Advice.

Our booklet Help with the cost of cancer has lots more information.

Further information

About our information

We provide expert, up-to-date information about cancer. And all our information is free for everyone.

Order what you need

You may want to order more booklets or leaflets, or download more eBooks like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00.

We have eBooks on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.

Online information

All of our information is also available online at macmillan.org.uk/information-and-support There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.

Other formats

We also provide information in different languages and formats, including:

- audiobooks

- Braille

- British Sign Language

- Easy Read eBooks

- large print

- translations.

Find out more at macmillan.org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@macmillan.org.uk or call us on 0808 808 00 00.

Help us improve our information

We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information.

We give you the chance to comment on a variety of information including eBooks, leaflets and fact sheets.

If you’d like to hear more about becoming a reviewer, email reviewing@macmillan.org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.

Other ways we can help you

At Macmillan, we know how a cancer diagnosis can affect everything, and we are here to support you.

Talk to us

If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help.

Macmillan Support Line

Our free, confidential phone line is open 7 days a week, 8am–8pm. Our cancer support specialists can:

- help with any medical questions you have about your cancer or treatment

- help you access benefits and give you financial advice

- be there to listen if you need someone to talk to

- tell you about services that can help you in your area.

Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous

Information centres

Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face.

Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence.

Find your nearest centre at macmillan.org.uk/informationcentres or call us on 0808 808 00 00.

Talk to others

No one knows more about the impact cancer can have on your life than those who have been through it themselves. That’s why we help to bring people together in their communities and online.

Support groups

Whether you are someone living with cancer or a carer, we can help you find support in your local area, so you can speak face to face with people who understand. Find out about support groups in your area by calling us or by visiting macmillan.org.uk/selfhelpandsupport

Online community

Thousands of people use our online community to make friends, blog about their experiences and join groups to meet other people going through the same things. You can access it any time of day or night. Share your experiences, ask questions, or just read through people’s posts at community.macmillan.org.uk

The Macmillan healthcare team

Our nurses, doctors and other health and social care professionals give expert care and support to individuals and their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you.

Help with money worries

Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help.

Financial guidance

Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings.

Help accessing benefits

Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits.

Macmillan Grants

Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.

Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area.

Visit macmillan.org.uk/financialsupport to find out more about how we can help you with your finances.

Help with work and cancer

Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work

Other useful organisations

There are lots of other organisations that can give you information or support. Details correct at time of printing.

Bowel organisations

Bladder and Bowel Community

www.bladderandbowel.org

Home Delivery Service 0800 031 5406

Email help@bladderandbowel.org

Information and support for anyone affected by bladder and bowel control problems, their families, carers and healthcare professionals.

Bowel Cancer UK

Email admin@bowelcanceruk.org.uk

Email ‘Ask the Nurse’ nurse@bowelcanceruk.org

www.bowelcanceruk.org.uk

Information and support for everyone affected by bowel cancer. Provide an online forum is a place for people to talk about their experiences, share their knowledge and support each other.

Daisy Network

www.daisynetwork.org

A support group for women who have had a premature menopause. Membership fees apply. It offers information covering health, fertility and psychological topics, a forum to connect with other members and live chat sessions where you can ask medical experts questions.

The Eve Appeal

Tel 0808 802 0019

Email nurse@eveappeal.org.uk

www.eveappeal.org.uk

Information and support for people affected by gynaecological cancers such as womb, cervical, vaginal and vulval cancer.

Jo’s Cervical Cancer Trust

Helpline 0808 802 8000

www.jostrust.org.uk

Provides information, emotional and practical support to people affected by cancer of the cervix. There is support and information for people affected by, or at risk of, pelvic radiation disease (PRD).

Menopause matters

www.menopausematters.co.uk

Provides up-to-date, accurate information about the menopause, menopausal symptoms and treatment options.

Orchid

Helpline 0808 802 0010

Email nurse@orchid-cancer.org.uk

www.orchid-cancer.org.uk

Works on behalf of anyone affected by prostate, testicular or penile cancer.

Pelvic Radiation Disease Association

Helpline 0800 121 6811 (Tue to Thu, 10am to 2pm)

Email info@prda.org.uk

www.prda.org.uk

Support and information for people affected by, or at risk of, pelvic radiation disease (PRD).

Prostate Cancer UK

Tel 0800 074 8383

www.prostatecanceruk.org

Information and support for anyone affected by prostate cancer.

Sexual Advice Association

www.sexualadviceassociation.co.uk

Website has information on sexual problems as well as sexual health and wellbeing.

Counselling

British Association for Counselling and Psychotherapy (BACP)

Tel 0145 588 3300 (Mon to Fri, 10am to 4pm)

Email bacp@bacp.co.uk

www.bacp.co.uk

Promotes awareness of counselling and signposts people to appropriate services across the UK. You can also search for a qualified counsellor on their ‘How to find a therapist’ page.

College of Sexual and Relationship Therapists

www.cosrt.org.uk

Website has information about sexual wellbeing and what to expect from sex therapy. It also has a directory of therapists to help you find professional support in your local area.

Relate

www.relate.org.uk

Counselling, support and information for all relationships.

Financial support or legal advice and information

Advice NI

Helpline 0800 915 4604

Email advice@adviceni.net

Provides advice on a variety of issues including financial, legal, housing and employment issues.

Benefit Enquiry Line Northern Ireland

Tel 0800 220 674 (Mon, Tue, Wed and Fri, 9am to 5pm, and Thu, 10am to 5pm)

Textphone 028 9031 1092

www.nidirect.gov.uk/money-tax-and-benefits

Provides information and advice about disability benefits and carers’ benefits in Northern Ireland.

Citizens Advice

Provides advice on a variety of issues including financial, legal, housing and employment issues. Use their online webchat or find details for your local office by contacting:

England

Helpline 0800 144 8848

www.citizensadvice.org.uk

Scotland

Helpline 0800 028 1456

www.cas.org.uk

Wales

Helpline 0800 702 2020

www.citizensadvice.org.uk/wales

GOV.UK

www.gov.uk

Has information about social security benefits and public services in England, Scotland and Wales.

Local councils (England, Scotland and Wales)

Your local council may have a welfare rights unit that can help you with benefits. You can also contact your local council to claim Housing Benefit and Council Tax Reduction, education benefits, and for help from social services (the Social Work department in Scotland).

You should be able to find your local council’s contact details by visiting:

England

www.gov.uk/find-local-council

Scotland

www.cosla.gov.uk/councils

Wales

www.wlga.wales/welsh-local-authority-links

Macmillan Benefits Advice Service (Northern Ireland)

Tel 0300 1233 233

Money Advice Scotland

Tel 0141 572 0237

Email info@moneyadvicescotland.org.uk

www.moneyadvicescotland.org.uk

Use the website to find qualified financial advisers in Scotland.

Unbiased.co.uk

Helpline 0800 023 6868

Email contact@unbiased.co.uk

www.unbiased.co.uk

You can search the website for qualified advisers in the UK who can give expert advice about finances, mortgages, accounting or legal issues.

Equipment and advice on living with a disability

British Red Cross

Tel 0344 871 11 11

Email contactus@redcross.org.uk

www.redcross.org.uk

Offers a range of health and social care services across the UK, such as care in the home, a medical equipment loan service and a transport service.

Disability Rights UK

Tel 0330 995 0400 (not an advice line)

Email enquiries@disabilityrightsuk.org

www.disabilityrightsuk.org

Provides information on social security benefits and disability rights in the UK. Has a number of helplines for specific support, including information on going back to work, direct payments, human rights issues, and advice for disabled students.

Living Made Easy

Helpline 0300 999 0004 (Mon to Fri, 9am to 5pm)

Email info@dlf.org.uk

www.livingmadeeasy.org.uk

Provides free, impartial advice about all types of disability equipment and mobility products.

Scope

Helpline 0808 800 3333 (Mon to Fri, 9am to 6pm and Sat to Sun, 10am to 6pm)

Textphone Use Type Talk by dialling 18001 from a textphone followed by 0808 800 3333.

Email helpline@scope.org.uk

www.scope.org.uk

Offers advice and information on living with disability. Also supports an independent, UK-wide network of local Disability Information and Advice Line services (DIALs) run by and for disabled people.

LGBTQ+ support

LGBT Foundation

Tel 0345 330 3030 (Mon to Fri, 9am to 9pm)

Email helpline@lgbt.foundation

www.lgbt.foundation

Provides a range of services to the LGBT community, including a helpline, email advice and counselling. The website has information on various topics including sexual health, relationships, mental health, community groups and events.

Live Through This

www.livethroughthis.co.uk

A safe space for anybody who identifies as part of the queer spectrum and has had an experience with any kind of cancer at any stage. Also produce resources about LGBT cancer experiences. LTT run a peer support group with Maggie’s Barts.

Disclaimer, thanks and sources

Disclaimer

We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models.

Thanks

This eBook has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.

With thanks to: Lisa Durrant, Consultant Radiographer; Dr John Green, Gastroenterologist; Helen Ludlow, Macmillan Nurse for Late Gastrointestinal Effects of Cancer Treatment; Deepa Muthukrishnan, Macmillan Specialist Dietitian; and Alison Wyatt, Macmillan Specialist Physiotherapist.

Thanks also to the people affected by cancer who reviewed this edition, and those who shared their stories.

We welcome feedback on our information. If you have any, please contact cancerinformationteam@macmillan.org.uk

Sources

Below is a sample of the sources used in our bowel late effects of pelvic radiotherapy information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Andreyev HJN, Muls AC, Norton C, et al. Guidance: The practical management of the gastrointestinal symptoms of pelvic radiation disease. Frontline Gastroenterology, 2015; 6, 53-72.

NICE. Faecal incontinence in adults: management (CG49). [Internet], 2007. Available from www.nice.org.uk/guidance/CG49 [accessed January 2021].

Can you do something to help?

We hope this eBook has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way.

We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.

5 ways you can help someone with cancer

Share your cancer experience

Support people living with cancer by telling your story, online, in the media or face to face.

Campaign for change

We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care.

Help someone in your community

A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand?

Raise money

Whatever you like doing you can raise money to help. Take part in one of our events or create your own.

Give money

Big or small, every penny helps.

Call us to find out more 0300 1000 200

macmillan.org.uk/getinvolved