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Living with a colostomy

Dolores Westfield, 62, was diagnosed with rectal cancer in February 2006. Following an unsuccessful course of chemotherapy and radiotherapy, Dolores was told she would need to have surgery and a colostomy. This is her story of living with a colostomy.

Dolores Westfield

Diagnosis and treatment

I had been to see my GP a couple of times complaining of pain and bleeding from my bottom. Then I felt a lump and was fast tracked to the cancer clinic. After examining me, the doctor at the clinic decided to do a biopsy, but didn’t think it was ‘anything sinister’.

By now the pain and the bleeding were increasing and I felt very ill. The biopsy was done as a day case and I watched as the doctor sent the other patients home. Then my husband and I were called into his office and were told I had cancer.

I started on a combination of chemotherapy and radiotherapy. During treatment the pain and bleeding both stopped and I could feel the lump shrinking. But it was hard going and I had terrible burns from the radiotherapy. My cancer specialist wanted to stop, but I insisted I finished the course.

Ten days after the chemotherapy and radiotherapy finished, the bleeding and pain started again and I could feel the lump getting bigger. I rang the hospital and they arranged for me to see the surgeons.

Having surgery

My surgeon said I needed major surgery and would have a bag on my side for the rest of my life. I was very weak due to the chemotherapy, radiotherapy, the pain and the bleeding. I had 10 days to try and build my strength up, but had no appetite. Everything tasted horrible. My poor husband spent his days trying to get me to eat.

During this time I met the stoma nurse. She gave me a list of contact details of people I could speak to before the operation. I phoned one of the ladies on the list who was very helpful. A friend’s husband, who has had a colostomy for 30 years, was also an inspiration to me. He reassured me about many of the worries I had, especially my concern that the colostomy would be painful.

But to be honest I only spoke to these people because my husband and family wanted me to and it seemed to be expected of me. All I could really focus on was the pain. I just wanted it to go away.

After the surgery I woke up in intensive care and following the realisation the pain had finally gone, I gingerly felt down my side to where the bag was. I thought, ‘Well, you’ve got this now, it’s saved your life and now you just have to deal with it’.

I was in hospital for just over 5 weeks. I was worried because the colostomy didn’t work for a while, but it soon started to function. The stoma nurse came to see me regularly. To begin with either she or the ward nurses cleaned the colostomy and changed the bag for me. I knew I would have to show that I could do this myself before I was allowed to go home. So although I didn’t want to, I cleaned the stoma a few times on my own. Before I left the hospital, the stoma nurse gave me an information pack and she also arranged for my colostomy supplies to be delivered to my home.

Going home

The morning after I got home I sat in bed and looked at the colostomy and had a little cry, knowing it was now part of my life. It was a bit like going home with a new baby. I thought, ‘Well, what am I going to do with this?’. A nurse visited every day but I was soon managing on my own. I named my colostomy Tommy, after my surgeon Mr Thompson. I would say to my daughter, ‘Right, I'm off to sort out Tommy’ and she had no idea what I meant! I did some research on the web and found out about the Colostomy Association. I rang and spoke to their helpline and they sent me lots of really useful information.

Dolores Westfield with her two daughters

Living with a colostomy

As a vegetarian I soon worked out that I had to reduce the amount of fruit and veg I eat. I avoid oranges and orange juice as they seem to upset my bowels and I just have the one glass of wine now. Acidic foods in particular can give me diarrhoea.

I did have some problems with the colostomy bag leaking and assumed it was just part of having to manage a stoma. I mentioned it to my stoma nurse at one of my follow up appointments. She checked my colostomy and made some alterations to the flange (the patch the bag attaches too) and the bag. Since then I have had no problems.

I always make sure I have supplies with me when I go out. I have a RADAR key which opens any disabled toilet and also a special card I can show people if I need to quickly access any toilet. Other than this, I just live my life as usual. I have been on holiday every year since having my colostomy, including a 6 week expedition to Iceland last year.

Raising the profile of colostomies

Quite soon after contacting the Colostomy Association I decided I would volunteer for them. In particular I wanted to raise the profile of colostomies. I have been interviewed by my local radio and press and have even been featured in Woman’s Weekly.

Through volunteering for the Colostomy Association I have spoken to many people with colostomies, and for some it is the worst thing that has ever happened to them. Many of them have let the colostomy rule their lives and they’re too frightened to even go out shopping. But I have met many others like me with colostomies who live full lives. I see my colostomy as my lifesaver and I am grateful for that every day.

Factfile

  • Each year more than 37,500 people are diagnosed with bowel (colorectal) cancer in the UK - that’s more than 100 people every day
  • Bowel cancer is the second most common cancer in women after breast cancer, with around 17,000 new cases diagnosed in 2006
  • Treatments include surgery, chemotherapy and radiotherapy
  • Colostomies can either be temporary or permanent

More information

On CancerHelp UK there is detailed information about

Sharing your story

The 'Your tips and stories' section of CancerHelp UK provides tips and support for people currently coping with cancer and treatment. You can use the Your tips and stories contribution form to tell us how you coped, so that other people with cancer, or their families, can gain help and support from your stories.

Some people help Cancer Research UK by sharing their stories in other ways – talking to the media, appearing in a Cancer Research UK advert, speaking to volunteers or being featured on our website. Read more about sharing your story

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Updated: 11 February 2010