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The stigma surrounding stomas – what can we do to take away the taboo?

A national overview estimates that over 13,000 people in the UK have stoma surgery each year. The most common conditions resulting in stoma surgery are colorectal cancer, bladder cancer, Ulcerative Colitis, Crohn’s Disease and accidental injury. There are approximately 176,824 ostomates nationally, with ages ranging from neonates to the elderly. Yet despite these numbers, why are stomas and bowel surgery not openly talked about? The topic of bowels has always been seen as taboo, an embarrassing subject which is never discussed, an area of our bodies we never mention to others.

It’s no surprise that we are often unwilling to talk about our bowels, its not a glamorous subject! But if we spoke more freely about the changes in colour, odour and texture of our bowel movements it could really be life changing. Altered bowel habits, faecal incontinence and inflammatory bowel diseases such as Crohn’s and Ulcerative Colitis are conditions that many of us face. Bowel cancer is responsible for the second highest number of cancer deaths in the UK but too many people are diagnosed at a late stage, due to the reluctance to tell anyone about their symptoms.

As a result, there is so much stigma surrounding bowel surgery and stomas.  Many people still don’t really know what a stoma is, to explain to those who don’t know…

A stoma is an opening on your abdomen that can be connected to either your digestive or urinary system to allow waste (urine or faeces) to be diverted out of your body and into a stoma pouch which is attached to the outside of your stomach.

Often people will also say they have never met anyone who has a stoma.  In fact 1:500 people have a stoma, therefore you are likely to pass one or two people, when you are out and about, who are currently living with a stoma.

All bowel conditions come with a rollercoaster of emotions, the unpredictability of needing to rush to the loo or being doubled over with cramps or pain, can cause depression, anxiety, isolation and loneliness. The psychological impact is huge! Following your stoma surgery, you may feel fear, vulnerability and social isolation due to body image issues, which take time to come to terms with. Body image is the aspect of self-concept that focuses our ideas about our physical appearance and how we compare ourself to others. Our bodies change after surgery, especially having a new stoma and getting used to the new pouch you need to wear. Adapting to this change is a huge step.

Having a stoma should not limit you in any way, once you are fully recovered you should be able to wear what you like and be as active as you like. You should still be able to enjoy all the things you liked doing before your surgery. Your diet may need a little jiggling to see what foods suit you following bowel surgery now that you have a stoma. Keep those you trust close to you and enjoy the support they are happy to give you.  A reluctance to talk about these subjects openly due to feelings of embarrassment only keeps the stigma of a having a stoma locked away.

Taking away the taboo…

In recent years the attitudes and perceptions of those living with a stoma are changing. Individuals have stepped forward to tell their story, posting photos of themselves on social media and blogging about their personal experiences of bowel disease, stoma surgery and coming to terms with living with a stoma. Many of these brave souls have taken photos of themselves dressed in their summer bikini’s or underwear, to show how their pouch looks and how they live their life again, in an attempt to normalise living with a stoma.

Breaking the stigma starts with positivity! Being supported by lots of positive people such as your colorectal surgeon, your gastro-intestinal doctor and your stoma care nurse can really help, as well as by joining support groups and associations where you will  meet people who share your feelings and attitudes. Re-educating your family and friends on your ability to live a full life with a stoma will help you feel embraced and remember….having a stoma should not define you.

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