Worries about the future

When you finish treatment it can feel like coming off a rollercoaster. You may have been putting all your effort into coping with treatment and now you have the chance to look back at what you’ve been through. At the same time, your hospital appointments may become less frequent, which might mean you feel less supported.

You may be facing a number of changes such as treatment side effects and changes to your body, adjustments to your weekly routine, roles at home or work, or possibly a change to your income. There can be positive differences too, like thinking differently about what is important and making more time for things that matter most to you. Keep in mind that it can take a long time to get used to the changes in your body and the way you feel.

Not everyone reacts in the same way after treatment and some people may not experience these types of emotions. There’s no right or wrong way to feel.

Some people find that having a positive attitude helps them cope, but you may also feel under pressure to avoid appearing low or negative. Try not to put too much pressure on yourself.

 

Bowel Cancer UK Publication - Living Well

 

 Information retrieved from Bowel Cancer UK. 2020

Regaining bowel control can be one of the biggest challenges that you face after treatment for bowel cancer. Your bowel habits are likely to have changed after your cancer treatment and you may have:

  • More frequent bowel motions

  • Looser poo

  • Wind

  • Tummy pain

  • Constipation

  • A feeling that you haven’t completely emptied your bowel.         

These problems may be worse in the year after treatment but can carry on long term.

If you have had surgery for rectal cancer that avoids a permanent stoma, you may have several bowel symptoms. This is due to a condition called low anterior resection syndrome (LARS). These symptoms often get better over six to 12 months but you may find them bothersome and they can affect your daily life. Having radiotherapy increases your risk of getting this syndrome. Speak to your healthcare team if your symptoms are not getting better.

If you have a temporary stoma, you will usually have it reversed after you finish treatment. Some people find it can take several months for their bowel habit to return to normal.

Diarrhoea

Diarrhoea is loose, runny poo that you pass more often than normal. You may need to rush to the toilet several times a day.

Bowel cancer treatments, such as surgery, radiotherapy and chemotherapy, can cause diarrhoea. Other possible causes include medicines, like antibiotics, and infections.

When you have diarrhoea, you need to drink enough liquid to avoid getting dehydrated. Take regular small sips and aim for at least six to eight glasses of liquid a day.

As well as losing water, you will be losing salts and other important nutrients. To replace these, try eating fresh or tinned soups and broths. You could also have Marmite on toast or plain crackers.

Light and easily digested foods can help with diarrhoea after bowel cancer treatment. Try to eat small meals regularly throughout the day and eat slowly to avoid bloating and wind. Reintroduce fibre very slowly when your symptoms have improved.

Food and drink to try:

  • Water or herbal tea

  • Just-ripe bananas

  • White bread, rice, pasta or noodles

  • Plain crackers

  • Peeled, cooked vegetables and fruit

  • Low fibre cereals like puffed rice or cornflakes

  • Skinned chicken or white fish

  • Cooked egg whites

Food and drink to temporarily avoid:

  • Drinks containing caffeine or alcohol

  • Sugary and fizzy drinks

  • Milk and other dairy products

  • Fatty or spicy foods

  • Raw fruit and vegetables

  • Beans and pulses

  • High fibre cereals like bran

  • Brown rice, multigrain bread and cereals

  • An artificial sweetener called sorbitol, found in sugar-free sweets and drinks

  • Nuts and seeds

If you feel too sick to eat, or if you become very dehydrated, your GP may suggest you use oral rehydration salts. These contain a balance of salts and sugars to help your body re-absorb them quickly. You can buy them from chemists and supermarkets. Always speak to your doctor before taking any medicines for diarrhoea. They will need to find out what is causing your symptoms before deciding on the best treatment for you.

Probiotics may help to reduce the length and frequency of diarrhoea caused by infection. You may not be able to take probiotics during chemotherapy or if you have low levels of white blood cells (neutropenia) because they can increase the risk of infection. Always speak to your healthcare team before taking probiotics.

Constipation

Constipation is when your poo is hard, dry and difficult to pass. You may find it painful when you go to the toilet or you may feel like your bowel isn’t completely empty. There is no rule for how often you should be having a poo – some people go more than once a day and others go every three to four days. Both of these are normal but if you’re going to the toilet less often than you normally do, you may have constipation.

Get medical advice straight away if you haven’t had a poo for more than a few days and you have pain, feel sick or have been sick (vomited).

Always speak to your GP or healthcare team before making big changes to your diet. If you’ve had constipation for a long time, you may need medical treatment before you change your diet.

  • Eating regular meals can help to relieve constipation, so eat at least three meals a day including breakfast, and try not to skip meals

  • Unless you can’t tolerate fibre, increase the amount of fibre in your diet, both soluble (porridge oats, ground flaxseed, pulses, fruit, root vegetables like parsnips, turnips and carrots) and insoluble (wholegrain cereal, multigrain bread, brown rice/pasta, dark green leaves like spinach). Do this gradually and in small portions to avoid wind and bloating. Chew your food well. It can take up to four weeks for you to see any change in your bowel habit.

  • Drink plenty of liquid, including water, regularly during the day, especially if you’re increasing fibre in your diet.

  • Some fruits can help with constipation, like prunes, raisins, apples, pears and apricots (fresh, tinned or dried). These are high in sorbitol, a natural laxative.

Other things that can help:

  • Avoiding sitting down for long periods of time.

  • Regular gentle physical activity for at least 30 minutes, five days a week.

  • Making sure you have enough time and somewhere private to go to the toilet, if possible.

  • Sitting in a squatting position on the toilet, with your knees bent and your feet on a stool. This can help you use the right muscles to empty your bowel.

  • Going to the toilet first thing in the morning or half an hour after eating.

  • Not putting off going to the toilet.

  • Firmly massaging your tummy in a clockwise movement can help get your bowel moving and can ease bloating and wind.

More support and information

Tell your healthcare team about any bowel problems you’re having or if your symptoms aren’t getting better. Your specialist nurse can give you information on ways to improve bowel frequency and control. They can also help you find out which foods might cause you problems.  

Your GP or specialist nurse may refer you to a specialist if:

  • You wake at night to empty your bowels

  • You need to rush to the toilet to empty your bowels

  • You ever have any leaks, soil yourself or lose control of your bowels

  • Your bowel symptoms stop you living a full life.       

If you have any of these problems, you may be referred to a continence specialist, a team who specialise in retraining the bowel and the muscles involved in emptying the bowel (biofeedback team) or a doctor who specialises in problems with the digestive system (gastroenterologist

 

Bowel Cancer UK Publication - Regaining Bowel Control 

 

 Information retrieved from Bowel Cancer UK. 2020

The side effects of treatment usually get better over time. But some people may have side effects that carry on for more than six months (long-term effects) or that start months or years after they’ve finished treatment (late effects).

Speak to your healthcare team if any side effects are not getting better or if you are having any new problems. The team can offer treatment and support. 

People cope with side effects in different ways. Things that people with cancer say have helped them include:

  • Changing their work-life balance

  • Focusing on the positive things in their lives

  • Improving their diet 

  • Doing more physical activity 

  • Using complementary therapies 

Possible late and long-term effects of treatment include:

Hernia

After surgery to your stomach area (abdomen), your muscles will not be as strong as before and you may be at risk of getting a hernia. This is caused by part of your insides pushing through a weak part of the muscle or tissue wall. After surgery for colon or rectal cancer, part of your bowel can push through the wound. Some people develop a hernia around their stoma (para-stomal hernia). Others may get a hernia after having their stoma reversed. You may not have any symptoms but you might notice a slight lump or bulge, especially when you cough or strain the muscle. Some people have some pain in the area.

To help prevent a hernia, avoid lifting anything heavy for up to three months after surgery. Once you have recovered from surgery, ask your healthcare team about abdominal exercises to build up your core (abdominal) muscles. They may also advise you to wear a support belt or garment.

If you have a hernia, you may not need any treatment or your healthcare team may offer you surgery to repair it.

Nerve damage

The chemotherapy drug oxaliplatin can damage the nerve endings in the hands, feet and lower legs. This is called neuropathy. In some people, neuropathy can last for months or years after treatment. You may get pins and needles, weakness or numbness. This can make it hard to do everyday things like writing, picking up small items and walking. Some people become sensitive to the cold and need to wear gloves when they use the fridge or freezer. Your symptoms may get worse before they get better.

You may get neuropathy symptoms during your chemotherapy cycle and for up to two weeks afterwards. Symptoms may improve once you finish treatment but in some people, neuropathy can last for months or years after treatment.

Tell your healthcare team if you have any symptoms of neuropathy. If the symptoms are affecting your daily life, your doctor may suggest lowering the dose of oxaliplatin or changing your treatment.

Bladder function

Surgery for rectal cancer can affect the nerves to the bladder. You may not be able to fully empty your bladder and you might leak urine. Radiotherapy can irritate your bladder so you may need to pass urine more often or with little warning. Your healthcare team can give you information on how to manage bladder problems or they can refer you to a continence service. 

 Information retrieved from Bowel Cancer UK. 2020

The worry and uncertainty of living with a cancer diagnosis can affect your sleep. Also, the cancer and its treatment can also cause extreme tiredness (fatigue).

Sleep

Sleep problems can last for many months after treatment finishes. Stress and anxiety can make it difficult to get to sleep, or cause you to wake up during the night. 

The worry that you are not getting enough sleep can itself be a problem. If you find yourself awake in the night, tell yourself that relaxing can be as refreshing as sleep. Lie quietly and don’t keep looking at the clock. Allow your thoughts to drift away and focus on things that make you feel happy. A relaxation or meditation CD or podcast can be a way to take your mind off the fact that you are not sleeping and you may actually drift off. 

Good sleep habits

Here are some tips on how to get into good sleep habits: 

  • Avoid caffeinated drinks (coffee, tea, cola) for at least four hours before bedtime – try a cup of herbal tea instead.

  • Avoid smoking or drinking alcohol close to bedtime (or give up completely).

  • Keep the same bedtime routine each night.

  • Only go to bed when you feel sleepy.

  • Don’t eat or watch TV in bed, but make it a place only for relaxing or sleeping.

If you continue to have problems sleeping, talk to your GP about self-help strategies or complementary therapies. If necessary, they can refer you to a counsellor or mental health professional, or prescribe medication. If your sleep is disturbed by needing to empty your bowels during the night, your GP may give you medicine, such as diarrhoea medicine, to slow your digestion.

Managing fatigue

Extreme tiredness (fatigue) is one of the most common effects of cancer and its treatment. It can feel completely draining and can affect all areas of your life. It’s not unusual for fatigue to last for many months after treatment is over. In some people, it may last for a year or two.

Fatigue can affect your mood and your relationships. You may feel impatient, upset or tearful over small things or you may avoid spending time with friends or family. You may be spending longer in bed in the morning, but still have problems sleeping. You may have difficulty accomplishing the smallest tasks and find that you’re short of breath doing even light activities. Poor concentration or memory loss might also be a problem. You might find that you have lost all interest in sex, even though you have recovered physically from your surgery.

Fatigue can get worse if you’re feeling stressed or low in mood. If you think this is the case, ask your healthcare team for help.

The following things can help you cope with fatigue.

  • Making a plan of what you want to do each day.

  • Doing the most important things first.

  • Pacing yourself by taking regular rest breaks, even when you’re having a good day. This can help you feel better in the long-term.

  • Trying to keep physically active, even if you don’t feel like it

 Information retrieved from Bowel Cancer UK. 2020

Cancer and its treatment can change how you think and feel about your body. You may feel sad, angry or worried about any changes to your body. You may have scarring, weight loss, physical discomfort, numbness or other side effects of treatment that can make you feel self-conscious or affect your confidence. Talking about how you feel can help you cope. You could talk to someone close to you or you could ask your specialist nurse for help. 

If you have a stoma, you may have strong feelings about the sudden and significant change to your body. Over time, and with support from your stoma care nurse specialist, you will learn to adapt to your new body. Getting through the first few weeks can be tough and you may feel like you have a mountain to climb, but remember family, friends and health professionals are there to help you. Talking about how you feel can help you cope.

Until you get used to looking after your stoma, you might worry about smells or leakage. You may worry that other people can see the pouch through your clothes and you may wonder how other people will respond to your new stoma. Your stoma care nurse specialist can help you with any worries you may have. Having a stoma should not stop you doing the things you enjoy. There are companies that sell underwear, swimwear and other products that can help you feel more comfortable. Ask your stoma care nurse specialist for more information.

Sexual function

Cancer and its treatment affects your emotions and relationships. This can lead to problems with intimacy and sex. If you have a stoma, this can add to any anxiety and change the way you see yourself as a sexual person.

If you have a partner, working together and being open about the effect of treatment on your sex life can help you both. Being physically and emotionally close with your partner may help you feel better able to cope with cancer. This doesn’t need to lead to sex, but if you want to be sexually active or want to start a new relationship, there are professionals who can help. Whether or not you have a partner, a psychosexual therapist can also help you to understand and come to terms with any sexual problems.

Many people find it embarrassing to talk about their sex lives but remember that your healthcare team are used to answering questions and talking openly about sexual matters and want to help.

Surgery and radiotherapy for rectal cancer can cause long term problems getting an erection and problems with ejaculation in some men. These problems may get worse a few years after radiotherapy finishes. Possible treatments include tablets that increase blood supply to the penis, injections to help you get an erection, pellets that you insert into the end of the penis, vacuum pumps and penile implants. The success of the treatment will depend on whether the nerves or blood supply to the penis have been affected by the cancer treatment.

In women, surgery and radiotherapy can cause tightening and shortening of the vagina. This can make sex difficult and painful. Radiotherapy can also cause dryness of the vagina but lubricants can help with this. Regular intercourse or using a dilator after you have completed radiotherapy may help reduce the risk of vaginal shortening.

If you feel you need help with any sexual problems, ask your GP or healthcare team to refer you to a sexual health specialist or psychosexual therapist.

 Information retrieved from Bowel Cancer UK. 2020

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Some people use complementary therapies alongside their medical treatment to help them cope with side effects and to relax.

Some people find that things such as relaxation therapy, massage, music, yoga, and acupuncture can help. These are referred to as ‘complementary therapies’. Keep in mind that there’s not much evidence to show that complementary therapy can improve symptoms or quality of life in people with bowel cancer, but some people find they help manage their symptoms. Speak to your healthcare team about how these sort of therapies may affect your treatment or recovery.

Your stoma may either be permanent (if there’s no longer enough bowel left to make a continuous pathway from the healthy bowel to the anus) or temporary. If you have a temporary stoma, you will usually have another operation to reverse it. Your healthcare team will tell you when this is likely to happen. Some people have their stomas reversed after a few months, while others have their stomas for several years before they have a reversal. It can take a while for your bowel function to return to normal after your stoma is reversed.

Find out more about what stoma reversal is, the possible risks and how to manage side effects in our factsheet, click here.