Mike, Ileostomate: I do my part by telling people about it, and educating people about it. After I do tell people about my condition, a lot of people congratulate me and comment me for just living the way I’m living. Any stigma that they might have, goes away.
A common worry for people with an ostomy is that they stand out compared to their surroundings, leading some to keep their ostomy a secret - or at least taboo.
However, isolating oneself with concerns and worrying thoughts can be quite damaging. Trying to put your feelings – positive and negative – into words, however difficult, contributes to normalizing the situation.
By letting people who care about you in, and allowing them to help you, you will likely make things much easier on yourself, and most people will be happy to give it to you and will only feel privileged to be included.
A temporary thing
Remember that it is most likely just for a short while in the grand scheme of things that you will need this special attention. Before you know it, you could have incorporated your routines completely into your everyday life and, importantly, are back to doing everything you did before surgery.
The people close to you might never get a second chance to support you like this – so never feel bad about letting them.
Remember: It’s new to them as well
They don't teach how to act around someone with an ostomy in school, so try to recognise that it is a difficult situation for your friends and family as well.
They are looking for ways to help you, but are probably struggling to figure out where the boundaries are, how many questions they are 'allowed' to ask – and how.
Talk to others who share your experience
While many find comfort in talking to their family or close friends, it can also be tremendously helpful to talk to someone with similar experiences about life with an ostomy. Ask your ostomy care nurse if it might be possible to put you in contact with others in your situation.
