13/08/2026
Surviving bowel cancer should not mean having to accept a poorer quality of life.
With more people living with and beyond bowel cancer, we’re working to better understand the long-term and late effects.
Following her stage 1 diagnosis, Debbie underwent radical surgery and lives with the long-term effects as a result.
“If my story helps one person feel less alone, more confident about speaking up or relief on hearing there is life with LARS (Low anterior resection syndrome) I will be pleased.
“My surgeon (was) a very clear and empathetic communicator, which helped tremendously. After surgery he came to the ward to explain the operation had been more complicated than anticipated and I would never be the same. From a cancer perspective, however, he was very happy.
"The reality for me post-surgery, at three months when I was told I should have hit my functional baseline, was that I was going between 15 times on a good day and 30 plus on a bad day. I was in permanent discomfort with the feeling of never being empty. I could not leave the house without a toilet plan. If I was going anywhere, toilets had to be mapped beforehand.
"If I was going out for the day, I would drastically reduce my intake in the two days before and not eat at all on the day out. After a few months the weight of this really took its toll and I stopped wanting to go out, because I was doing everything whilst starving hungry and therefore frankly grumpy.
"LARS is largely invisible. Many people look well and are told treatment was a success, while privately organising every day around toilets, food restriction, exhaustion, embarrassment and anxiety. It erodes confidence and spontaneity. You stop living normally because every outing becomes a risk calculation.
"At six months, when my bowel function hadn’t recovered, I requested a referral. I asked to try trans-anal irrigation (TAI). Total game changer. It takes time each morning, but it has given me back the ability to leave the house feeling comfortable and without fear.
"I eventually found an intervention that helped, but only after many months of unnecessary distress. Earlier specialist input could have prevented prolonged physical and psychological harm.
"LARS is an extremely debilitating condition that isn’t taken seriously enough. It can leave people practically housebound and can have a hugely negative impact on mental health.
"Too often LARS is minimised because surgery was necessary to treat the cancer. But survivorship must include quality of life, not just survival. This needs to change."
Debbie's experience with LARS and her advocacy for herself show just how much more focus is needed on the late effects of bowel cancer.
Our aim is to improve the support and understanding people receive. Together, we identified some key areas the research should focus on.
Read our report on understanding long-term and late effects of bowel cancer treatment: https://bit.ly/4xvQV55