My Health: Living with a stoma

Julie Steveson with her fiance, Timothy Bamber
Julie Steveson with her fiance, Timothy Bamber

I have had a stoma for 12 years.

I was suffering from Crohn’s disease and was in a lot of pain daily before receiving my surgery to be fitted with a stoma when I was 13.

I managed quite well and think that getting the stoma at a younger age helped as I was more adaptable to change.

I was dealing with a lot before the surgery, having tried medication and various other routes, so when I got my stoma my quality of life was a lot better!

My life is a lot easier and everything is more manageable now. Sure I sometimes have some issues with it but all can be dealt with, with the help of services like Respond - a local organisation which provides home delivery and support services to the stoma care community.

The main difficulties of living with a stoma were worrying about what other people thought. I was a teenager and worried about how it would affect my dating life or going on holiday.

My first holiday with friends was a little nerve-wracking at the start but after I told my friends about the stoma and my condition I felt instantly better. They were ‘dead on’ and more surprised they didn’t know already.

I do believe my insecurities were heightened because I was living with Crohn’s and society can be very superficial but I always wanted to be positive and not let anything hold me back.

When initially worrying about what a boyfriend would think I quickly realised that if someone had a problem with it they aren’t worth being in my life anyway.

Having a stoma has not held me back. Crohn’s was the thing that held me back rather than the stoma. I wear bikinis on holiday and I go about my life quite normally.

My life is better now. I am not constantly worrying where the nearest toilets are or how to deal with normal life while being in excruciating pain as this stoma has taken these worries away.

Living with a stoma is the norm for me and I couldn’t really imagine life without one now as I have had it for as long as I didn’t have one.

My family and friends have been great. I think it has brought my family closer together. And my dating life couldn’t be any better as I am actually getting married in May next year!

My fiancé has been with me through hospital appointments and sickness and when we got engaged this past July we couldn’t wait to set a date as soon as we could.

However, I do think that society is not accepting enough of people living with a stoma. I don’t believe it is talked about openly enough. I agree with some supermarkets etc that have changed the signs on disabled toilet doors to highlight that not all disabilities are visible.

Even though I don’t see what I have as a disability I guess it is and I do need to use the disabled toilets sometimes in order to empty the waste from the stoma in private.

My message to someone who has just found out they will need to live with a stoma, is ‘have a positive attitude’.

What message would you have for someone who finds out they will need to live with a stoma?

It is not the end of the world. My experience has been a positive one and yours could be too. Life is better with the stoma rather than without. I am not in horrible pain every day. Don’t let it stop you from doing anything. Technology has advanced so much that makes living with a stoma easier.

Services like Respond have really improved my life. I really get on well with everyone at Respond. They make me feel comfortable enough to pick up the phone whenever I need to and ask for help. Sometimes I run out of some equipment such as bags and I call Respond who sends a few bags out to me urgently in the post. They also give great advice and always just at the other end of a phone.

I think the biggest misconceptiona about living with a stoma is that people assume they should be able to see the stoma and that it is obvious to spot people with stomas. They also assume people living with stomas always have toilet issues when they don’t.