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

A nationwide survey shows that over 10.000 people undergo ostomy surgery in Germany every year. The most common diseases that lead to such surgeries are bowel cancer, bladder cancer, ulcerative colitis, Crohn's disease and accidental injuries. In total, there are around 160.000 stoma patients in Germany, from newborns to the aged. But why, despite these figures, are stomas and bowel surgeries not talked about very openly?

Talking about it: NOW

It's not surprising that we're reluctant to talk about our bowels – it's definitely not a glamorous topic. But if we just talk more honestly about changes in colour, smell and texture of our stool, it could really change and save our lives. Abnormal changes can usually be the first sign of a disease. After all, it is something perfectly normal, just like eating, drinking, sleeping or laughing.

Changes in intestinal function, faecal incontinence and inflammatory bowel diseases such as Crohn's disease and ulcerative colitis are diseases & symptoms that many of us struggle with. Bowel cancer is actually the second most common type of cancer in Germany. Unfortunately, too many people are diagnosed at a late stage. And why? Because they are afraid to tell anyone about their symptoms.

This completely unsubstantiated sense of shame in our society creates a huge stigma, particularly around bowel surgeries and stomas. In fact, many people don't even really know what a stoma is.

What is a stoma?

A stoma is an artificially created opening in a hollow organ in the abdomen. This can be connected to either the digestive or the urinary system in order to channel excretions (urine or faeces) from the body into a stoma bag that is attached to the outside of the stomach.

People often say that they've never met anyone with a stoma. However, 1 out of 500 people actually have an ostomy supply under their everyday clothing. That's quite a lot. Put quite simply, this means that when you travel to work with public transports or go shopping, you will unconsciously meet one or two people with a stoma.

Learn more about the different types of stoma: Colostomy, Ileostomy und Urostomy.

Understanding feelings

All bowel disorders are associated with a rollercoaster of emotions. The unpredictability of having to go to the toilet in a hurry or doubled over with cramps or pain can lead to depression, anxiety, isolation and loneliness. The psychological impact is enormous! Even after a mostly relieving stoma operation, you may feel anxious, vulnerable and socially isolated because you now have to deal with your body image. The body image is the aspect of self-concept that focuses on our ideas about our physical appearance and how we compare ourselves to others. After surgery, your body has changed, especially because of the new stoma. It is often a long process to become aware of this change, to slowly get used to it and to continue to treat yourself and your body with respect.

Basically: A stoma should not restrict you in any way. Once you have fully recovered, you should wear what you want and be as active as you like. You should and will still be able to do all the things you enjoyed doing before your surgery. Only your eating habits (at least with colostomy and ileostomy) will have to change a little, as your bowel now works slightly different and may not tolerate some foods as well as before.

Keep the people you trust close to you and enjoy their support. Most people will be happy to give you the encouragement you may need. Please don't be afraid to talk openly about your issues. Lead by example and overcome the stigma!

Taking away the taboo

In the past few years, the mindset and perception of people living with a stoma has changed. Some have even dared to tell their story openly and honestly. They post photos of their "new old" body on social media and blog about their personal experiences with bowel disease, stoma surgery and coping with life as a ostomate. Many of these brave people show themselves in their bikini on summer holiday or in their underwear to show how their accessory looks and how they have learnt to live and love their lives again. All these remarkable people show how absolutely normal life with a stoma can be and, even more importantly, is.

Breaking the stigma starts with positivity! Support from your bowel surgeon, GP and stoma care nurse will have a positive influence on you. So does joining support groups where you will meet people who share their feelings, attitudes and experiences and understand yours. It is also incredibly important to share with your family and friends that you can live a fulfilled life with a stoma. This is the only way you can and will feel accepted.

And always remember: Having a stoma should not define you!

For more information about us or our products, please visit our website. There you will find, among other things, our detailed FAQ and other interessting blogarticles all about the topic stoma. You can also contact us via our social media channels or send us an e-mail. We look forward to hearing from you!