Living with and beyond cancer

Some kinds of cancer treatment, like surgery or radiotherapy to the stomach or bowels, left people with long-term effects relating to their digestion. The bowel symptoms varied, but included diarrhoea, incontinence, flatulence (wind) and constipation. These sometimes got better with time, but for some of the people we spoke to, these changes to their bowel were more permanent. A 27 year old woman living beyond cervical cancer described how she now suffers with diarrhoea and incontinence, but accepts these changes to her life as her ‘new normal’ as a result of the treatment she received. 

People who experienced what they described as ‘constant diarrhoea’ took long term medication to control their bowels.  Experiencing flatulence in the long-term was another common side effect. Janet, who had colorectal cancer, described how living with ‘half a gut‘ due to her bowel surgery left her with ‘wind’ and a need to go to the loo quite often. She ‘gets on with it’ and doesn’t feel that it’s anything to be embarrassed about.

Even in the long-term, certain foods were more likely than others to trigger a bowel reaction like flatulence or diarrhoea, and it was often a case of trial and error to work out which foods were easier to digest. Marion described how she had to be a ‘bit careful’ with what she eats, as salad, sprouts or cauliflower can ‘wind you terribly’. Having excessive flatulence was a long-term issue that never really went away for people like John, who had colorectal cancer. He also experiences persistent diarrhoea for which he has taken medication for the last seventeen years. 

For Thomas, who also had colorectal cancer, foods like tomatoes or onions still lead to diarrhoea and incontinence. He has found it useful to keep a diary of what triggers his stomach to react so he can keep track of which foods to avoid. Although his bowel problems can sometimes be embarrassing, he finds that he can ‘get on with it’. 

Bowel or stomach surgery meant that some people also had to adjust the manner in which they take their meals. John (Interview 09) had extensive surgery for bowel cancer, and was left with ‘half a stomach’. He, and his wife, have changed their eating habits completely to ‘eat very small and often…and lightly’.  They only occasionally go out for dinner in the evening. Claire, who also had colorectal cancer and part of her stomach removed, similarly finds that she has to eat ‘little and often’ as she’s restricted in the amount she can physically eat.   

People who have had bowel surgery can be left with a permanent stoma or ileostomy. This involves surgery to bring the end of the bowel outside the body, and bowel movements empty out into a bag attached to the skin. Brenda described having a stoma as a ‘new way of life’, as instead of going to the toilet she just goes to the bathroom and changes a bag instead. Not everyone felt the same way about living with a permanent stoma. One man who has had a stoma for twelve years following an operation for colorectal cancer said it’s the ‘best thing’ that ever happened to have a permanent stoma. He still travels abroad, goes swimming and does all the things he wants to do. On the other hand, Vic said that having a permanent stoma is the biggest problem with living with the effects of cancer now. It was common for people living with a stoma to worry about having accidents or leakages from their stoma. A man living five years after colorectal cancer described how he had to leave his job in the building trade as the strain of lifting heavy items caused his stoma to leak. Another woman who has a stoma described how she had worries about having an accident and had dreaded attending her niece’s wedding. Needing to change their stoma bag and finding somewhere to do it was not always easy when out and about. People found it helpful to have a radar key which enabled them to use any disabled toilet in the UK.

A few people we spoke to said that having a stoma made them feel unclean. One woman uses colonic irrigation every morning. She says it gives her “24 hours of cleanliness” and she feels in control which enables her to carry on with her life.
 

Having extra support, such as a good stoma nurse or membership of the Ileostomy and Internal Pouch Support Group (formerly known as the Ileostomy Association), helped people feel more confident when living with a stoma. Having extra support from family and loved ones also helped, as living with a stoma affected people’s self-image, and sometimes how they felt about their sex life.