For this Alternative blog post, we asked ANA collaborators which questions come up most often when they tell people they have a stoma.  When I tell people I’m an ostomate, they often ask why and since when.  Sometimes people understand right away what I’m talking about but more often I get asked -what’s a stoma? Does it hibernate for winter?

Here’s what ANA colleagues have to say:

The most frequent questions for Anik are: Does it hurt?  How often do you have to change your bag? Do you ever feel like you have to go to the bathroom? Can you sleep on your stomach? Are you stuck with a stoma for the rest of your life?

The question Laurie-Anne gets asked the most often after she tells people she has a stoma is: Do you live well with a stoma? In other words, have I accepted it? Am I happy and well-adjusted?  Do I have any dietary restrictions or physical limitations?  People, for the most part, seem worried about my wellbeing given my age and the stigma associated with stomas.  They always seem surprised and relieved when I tell them I’m happy and grateful for my stoma.  In the end, I believe it’s important to answer people’s questions honestly in order to crush taboos and false beliefs.

The questions Karine gets asked most are:

1-    Can you still play sports?
2-    Can you swim?
3-    Can you have another baby even with your stoma?
4-    What do you do so it doesn’t show and you don’t smell poopy?
5-    Can you still have intimate relations?
6-    How do you make love with that thing?
7-    What do you tell people you’ve just met?

Aaaaah…..those infamous questions when you tell people you’re atomic – I mean – ostomate! Nicolas’ top 5 are:

5-    Do you empty your bag standing or sitting?
4-    How does the bag stay on and how do you empty it?
3-    You still go to the bathroom? How often?
2-    Do you have to hold your bag when you shower or do you take it off?
1-    What’s a stoma?

Most importantly, people are curious without being judgmental.  They can see that I’m obviously at ease.  They just want to know.  Sometimes their questions are a little ridiculous especially for those of us in the know and sometimes their questions are funny or awkward.  Often the person in front of you is just as nervous or embarrassed as we are.

For Stéphanie :

What does it look like?  Is there a tube coming out of your skin?  Can you change your bag? When? Might I hurt you?  How many times a day do you have to empty? 

We could probably come up with many more questions but the list would have been too long!  If these few testimonials are anything to go by the subject of stomas is still widely misunderstood.  People may have sometimes heard of an elderly uncle, a little cousin or the friend of a friend who almost had to get a bag, but that’s the limit of their understanding.  As Laurie-Anne and Nicholas have both mentioned, people are as uneasy as we are when we share details of our situation, but honest and open dialogue play an important role in today’s society.  Curiosity without judgment is precious – don’t be afraid of it.

In the next post, our bloggers try to answer some of these questions.

Andreanne

Translated from French by Jane Loignon