Philip Rollinson

CAN I HAVE A WORD?  

Telling someone you have a stoma can be an awkward experience, even if they’re very close.

Getting over stoma surgery can be hard, and at some point it will mean breaking the news to other people.

“You shouldn’t be embarrassed about having a stoma,” said ileostomate Philip Rollinson. “My stoma saved my life, so I never feel ashamed of it, nor do I excuse it. You’ll probably need to build up your self-confidence before you inform others, but there’s no reason why you shouldn’t be able to do that.”

Often a patients family will know about the possibility of a stoma before their operation, and the subject won’t feel anxious about talking to them; after all, those closest to us love us for who we are. However, family tend to be a special case, and it’s likely an ostomate will find it difficult to tell others about their situation.

“I used to be a PE teacher,” said Philip, “and because my job involved teaching pupils in a physical environment, I felt that I needed to tell them about my stoma. But I didn’t know how to go about it.”

Seeking Advice

Philip, 55, admitted that he was horrified when he first saw his ileostomy and was embarrassed whenever it made gurgling noises in public. When he went back to work, one of his pupils asked whether he was wearing a money belt, referring to the stoma pouch’s bulge around his waist. So, shortly afterwards, while Philip was on a counselling course, he talked to a professional listener about how to handle this tricky situation.

“The counsellor made me realise that having a stoma simply meant I was alive,” said Philip. “He offered me great advice for telling others about it, suggesting that I should get any embarrassment out into the open and make people aware that having a stoma wasn’t a problem for me.”

Exactly how you tell someone about your stoma, however, depends very much on the person in front of you, and on how much you want them to know. Bob Price, a nurse who has written a book about body image, says you need to think through how you intend to express yourself. “It’s a good idea to decide what sort of image you want to convey,” he said. “You can present yourself in different ways, For instance, to want to appear as ‘damaged but coping’? Or as ‘someone coping well but who would like forbearance from others on occasions’? Or as ‘an organised person who’s really getting on with life’?”

Bob believes that this approach is important because people can react to the same news very differently. For instance, some are likely to try to rationalise why you have a stoma and pepper you with 101 questions. Others might try to wrap you in a cocoon of care and pigeonhole you as someone with a stoma. Whatever the case, Bob recommends that patients should try and anticipate how people will react.

Plan of action

“One technique is to draw a stick figure at the centre of a piece of paper, representing you, and then to trace three concentric rings around it,” he said. “In the first ring write down the names of those you are closest to. In the middle ring write down the names of firm friends, but with whom you don’t share all of your intimate secrets. In the outer ring write down the names of those you’re least closest to, for instance, work colleagues and acquaintances.

“Having done this, you then draw arrows between each name and yourself. This will make you realise who the key people are in your life. Then, by drawing arrows between people who know each other, you can start to think about who will pass your news on to others. You can think about who you want to tell, who you’d prefer not to, and who could be your ‘trusted ambassadors’.”

Bob also has a technique for choosing how to break the news. “To help you decide the level of intimacy you feel comfortable with, try writing two paragraphs three times explaining that you have a stoma. The first time, write it as almost superficial information (‘I have been to hospital and my lifestyle has changed’). The second time write it as more involved information (‘I now manage going to the loo in a different way’). The third time write it as intimate information (‘I have a stoma and this is how it has affected my life…’).”

But when should you slip into a conversation the fact that you have a stoma? Philip reckons that whether he tells someone depends on the situation and the person he’s talking to. “I generally play it by ear,” he said. “I’ll tell someone when I feel comfortable.”