A woman and her ostomy bag look deep in thought, surrounded by question marks.

Having a Stoma: Who Should I Tell?

Finding out you are going to have a stoma can take quite a bit of getting your head around. I know it did for me. Suddenly realizing that you are now going to "pee" through a hole in your tummy is something I never expected would happen to me, but it did and I had to learn to deal with it.

My worries

Initially, I felt somewhat embarrassed of the situation my stoma had put me in. For instance, I was now going to be standing up when using the loo! What if someone noticed my feet pointing the wrong way around under the toilet door? All sorts of silly scenarios were going around in my head. But my biggest worry of all was "what if someone notices I have a bag?"

Naming my stoma helped

My close friends and family were all aware of my situation and were, without exception, very supportive. We even gave my stoma a name "Winnie" was what we decided to call her. It somehow seemed less medical and more personal. Whilst in Hospital my stoma nurse had told me it was quite common for patients to "name" their stoma. The funniest I heard of was "Princess Pee". All my friends started asking "so how's Winnie doing?" Whilst giving my bag a gentle little pat. It made me smile and less embarrassed somehow, I became more comfortable with my stoma, "my Winnie".


For me before I could start telling "other" people I needed to be totally comfortable with myself. That sure took a bit of time, but I realized that my "Winnie" was going nowhere and was going to be a part of me forever! That was the truth, there would never be any going back. Wherever in the world I may go, she would be there too, right by my side!

Deciding who I should tell

There are certain people that you need to inform of your stoma such as your employer, immediate family, and probably close friends too. As you may well need their support at some point for such things as Hospital check-ups, the need to know where the nearest loo is and on the rare occasion that you may even "spring a leak". If these people are aware in advance of possible issues you may encounter it does make life a lot easier.

Raising awareness

I soon learnt that there was very little awareness of bladder cancer. Some of my friends didn't even think that a woman could get it! That it was "an old man's" cancer. I can tell you that a lot of younger people, unfortunately, fall victim to bladder cancer too.

So with this lack of knowledge in mind, I decided I wanted to champion awareness. The symptoms, the tests, the options, the surgery etc. And basically, I hid my stoma from no one. I would quite happily, briefly share my own personal experiences with anyone that wanted to listen. Not for sympathy, but to make them aware of the symptoms that are very often ignored by the patients and sometimes by Doctors too. We all see the big campaigns for breast and testicular cancer and the importance of checking yourself. Well, folks you also need to keep an eye on your "pee" too. Any signs of blood in the urine should never be ignored, also repeat UTIs should receive further investigation too, and never be afraid of asking for a second opinion. Because as with all cancers, the sooner it is detected the easier it is to treat.

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