Stories

I’ve had many amazing experiences in life, thanks to my ostomy! It has been nearly 5 years since I’ve got a second chance to live and explore the world with quality of life.

The pandemic opened up so many wounds for me about how unpredictable life was and the absolute fear of what the future held.

These top tips I either use myself or have been suggested to me by other ostomates to help manage and live a bigger life with your stoma.

Being an ostomate should never stop you from experiencing intimacy, however the first time after surgery or with a new partner can still have you feeling worried. Hopefully these tips can help!

When I have met someone for the first time, I try to get to know them and for them to get to know me first, I just can’t say ‘oh by the way….’.

Finding the balance between comfort and style can be difficult as an ostomate, no matter how far into your journey you may be. However, these tips might help.

It was like a contraction pain that came in waves. I felt very sick but luckily wasn’t actually sick. My bag was empty which was unusual for me and I knew I had a blockage.

We can have some amusing times with our stomas, we have to laugh at ourselves and try and see the funny side.

The reason surgery is considered a last resort is the fact that recovery can be slow with complications, but I think if surgery was an option sooner then the chances are there would be less complications and quicker recovery times.

Having chronic ill health and being under multi disciplinary teams, is very difficult during the pandemic. Everything seems to be on hold even to the point that it is difficult to get hold of secretaries and Doctors

High waist shorts with longer tops, wraps or flowing tops also disguise your bag and all these things help with confidence if you are unsure whether your bag can be seen. It will partly be in your head that people can see but in reality they can’t, when I see other ostomates I never notice so therefore no one probably notices mine.

High waist shorts with longer tops, wraps or flowing tops also disguise your bag and all these things help with confidence if you are unsure whether your bag can be seen. It will partly be in your head that people can see but in reality they can’t, when I see other ostomates I never notice so therefore no one probably notices mine.

Although my doctor signed me off work for 6 months, I really did think I was invincible, and this was my biggest mistake. I thought it would be good to share my errors and problems with you, so that you don’t make the same mistakes I made

The ostomy care product world is a crazy jungle, and I have tried at least 7 different types of flange extenders / tapes that go around my wafer, manyrings and a few pouches.

I turned to social media where I discovered a big community of people and organizations who speak out about this invisible condition and who are happy and living a normal life.

I was sick for about a week, tested negative for covid thankfully. I lived on my couch and did nothing, so I had all the time in the world to observe my own symptoms and thoughts.

I like my system and I can see through the window part clearly which helps me know that I have placed it properly around the stoma and fistula. So for me, the most important things about a pouching system is comfort and leak free.

The most important thing is to always take spare stoma supplies with me wherever I go. For a week away, I always take a minimum of two weeks' worth of supplies ... of everything. Sometimes I take more. I figure I would rather take too much than not have enough, and any leftover will just come home with me. It's more important however to remember to take them with you.

This summer I got a part time gig as a nursing assistant and I have learned so much! I obviously can’t go into full detail about my job, but the one message I want to deliver is that many things can be done as an ostomate too!

I am thankful that I haven’t had to change my stoma bag in a public toilet ( except my work one but that doesn’t count) as there are often no shelves, no hooks and no mirrors. Does anyone have a different way of emptying their bag? Or any tips to help make things easier?

Going to events, such as concerts, weddings, family gatherings or house parties with an ostomy can be a bit scary at first. But with a little bit of preparing anything can be done.

Having a stoma will not stop you doing anything at all once you are fully recovered and that is very important to understand. It will not shorten your life, nor will it will not stop you eating your favourite food.

Having a stoma will not stop you doing anything at all once you are fully recovered and that is very important to understand. It will not shorten your life, nor will it will not stop you eating your favourite food.

I raise awareness every day about living with a stoma - a life I know full well that not everyone can accept as I do; but my love is for my life that I now get to live with my loved ones.

Clare shares how using the correct ostomy products for your needs is essential in managing your stoma.