The Bowel Owl

Use our Bowel Owl resource to learn more about what support you can tap into after bowel cancer treatment. Acknowledging your ‘new normal’ can be the first step to feeling that you have regained control over your body and your future. 

Bowel Cancer treatment can leave you feeling, tired, battered and emotional. As if that wasn’t enough, you may also have worries about work, finances and relationships. The flip-side is that this experience may help you focus on what really matters to you and help you think about changes you may want to make to the way you live your life.

Life after bowel cancer

Now you have reached the end of your bowel cancer treatment you will be looking forward to getting back to ‘normal’. You probably have already realised that not everything will be the same as before, so for normal read ‘a new normal’. This new normal may be as good or even better your old normal. It will definitely be different and sometimes it will be difficult, which is where we would like to help. If there are issues that we haven’t covered please use the ‘contact us’ facility in the footer to tell us more.

Here are some of the difficulties you may need help/advice/support with:

Help with your stoma

Your stoma nurse supplies you with everything you need whilst you are an in-patient but what happens when you are discharged? Don’t worry, you’ll be seen as an out-patient until you can manage on your own or with the help of family members. Your stoma nurse will correspond with your GP to arrange for an external supplier to provide your bags and accessories.

If you’re a patient at the Royal Surrey, you may be able to receive a home visit initially and then you can come to the clinic. There is also a telephone advice service available – call 01483 571122, ext 2558 or bleep 0911.

For those in other areas, you should be referred to a stoma nurse when you leave hospital – check with your care team before you are discharged.

More on stoma care

Mental/emotional health
Patients at the Royal Surrey can access counselling and other services from the Fountain Centre – ask your cancer nurse for a referral. Help for children, families and carers is also available.

Managing fatigue: There are multiple contributing factors to cancer fatigue – post operative pain, treatment related fatigue, anaemia, insomnia caused by your medications and loss of muscle mass due to lack of activity. As you recover, listen to your body and note what activities cause extra fatigue to avoid a ‘boom and bust’ cycle. When you feel tired, that’s your body telling you that you need to rest! Recover your strength with activities such as yoga, walking and simple weights rather than aiming to immediately resume your ‘old’ exercise habits. If you haven’t already been referred, ask your cancer team or GP about joining an exercise programme designed for people recovering from cancer.

Exercise for patients with and without stomas: Royal Surrey patients can be referred for exercise programmes run by the University of Surrey – ask your cancer nurse or GP for a referral. For patients elsewhere similar programmes are available across the country; speak to your cancer team or GP about being referred.

LARS (Lower Anterior Resection Syndrome) is a set of symptoms that can occur after a bowel resection or stoma reversal. It can include drastic changes in bowel habits, sudden and debilitating pain and loss of bowel control. As well as being unpredictable and embarrassing, the symptoms can result in some social isolation if you become reluctant to leave home. Usually the symptoms will gradually subside as the bowel recovers from the surgery but they do sometimes persist. It is your gut’s reaction to the trauma of surgery and can include any or all of the following:

• A complete change of bowel habit
• Loose movements (diarrhoea)
• Incontinence/leaking
• Loss of bowel control or sudden urgency, where you find yourself needing to suddenly empty your bowels
• Rectal pain or an uncomfortable hot sensation
• Increased wind

Some symptoms can persist indefinitely but the good news is that, with help, you can learn how to manage them and in time most should improve. Apart from the physical discomfort of these symptoms, they can also impact your mental health if your desire or ability to get out and about or return to work (for instance) is affected.

What help is available?

Help can include dietary advice, pelvic floor exercises, stress reduction techniques, advice on medications and counselling.  Social media groups are a really useful source of information and peer support – there is an excellent Facebook group run by and for people with LARS. They can offer invaluable advice on ways to manage the condition from people who know exactly what you are going through.

We also recommend Dr Anisha patel’s book ‘Everything you hoped you would never need to know about bowel cancer‘.

Sexual function

Cancer treatment can affect both sexual function and desire for men and women.

What help is available?

For women experiencing a loss of libido and men with loss of libido or erectile dysfunction, counselling (either with or without a partner) with a registered psychosexual therapist may be helpful. Don’t feel embarrassed about asking your GP for a referral, they are there to help you. Your hospital team maybe able to refer you as well.

You can also speak to your GP about medical help (eg Viagra). For women experiencing vaginal dryness symptoms, your GP can advise on the range of devices and topical applications that are available.

FURTHER INFORMATION

Menopause symptoms

Cancer treatment can trigger an early menopause. As well as having to manage the physical symptoms of menopause, the emotional or psychological loss you may experience will be also be difficult to process so you may need to speak to a counsellor.

What help is available?

Speak to your GP about HRT to help alleviate the symptoms. There are also a lot of practical steps you can take to help with symptoms such as hot flushes:

Fertility

Cancer treatments can affect fertility in both men and women and if you are young, your oncologist will probably already have advised you on freezing eggs or sperm so that the option to have a family at a later date remains open.

MORE INFORMATION

Support Groups

Support groups can be very useful in linking you up with people who have gone through exactly the same experience. You might find it helpful to join one or two before you make any big changes.

If you have received your treatment at the Royal Surrey, your CRC nurse can refer you to our sister charity The Fountain Centre, where a range of group, family and holistic therapies are available.

Physical changes

Bowel cancer treatment can result in loss of bowel control. Although this can present challenges to you at work and socially, try not to worry as it should gradually improve. You may need to adapt your diet – try to observe what foods do and don’t work for you so that you can avoid the worst offenders.

Talk to your colorectal care team about when you have follow-up appointments, especially if you are having trouble regaining weight you lost during treatment.

Other physical side effects as a result of treatment include loss of libido (sex drive) and sexual function. This is very common and is usually just temporary.

Follow-up

You are likely to be offered follow-up appointments after your treatment has finished. These may include a CEA blood test that may indicate if the cancer has returned.

You can use these appointment to discuss your overall physical and mental well-being as well.

Treatment side effects 

Nutrition and dietetics 

Access to support for carers