'I did worry about what a boyfriend would think'- Julie (25) on living with a colostomy bag
Teacher Julie Stevenson, who had a colostomy bag fitted when she was 13 on how the procedure has changed her life for the better
Published 05/10/2016 | 11:50
It is a condition many people feel they can't even talk to their closest friends about, but in an attempt to shatter some of the myths two patients talk openly about what it is like to live with a stoma.
Joe Davidson, a grandfather from Antrim, and Julie Stevenson, a teacher from Ballymena, believe people are afraid to open up about having a stoma due to a lack of understanding.
They hope that by sharing their stories they will help create more awareness about the condition and make it easier for others facing the same diagnosis. Joe and Julie also explain how a home delivery aftercare service has transformed the quality of life for people like them who live with colostomy bags.
People of all ages will require stoma surgery for a number of reasons including cancer, ulcerative colitis, Crohn's (often referred to as Inflammatory Bowel Disease), diverticular disease or trauma.
Julie was only 13 when she had to adapt to life with a stoma. Now engaged to be married and studying for a degree she is living her life to the full.
Meanwhile, Joe was so seriously ill with colitis that he almost died. But having a colostomy bag dramatically impacted on his quality of life. And with the help of the right equipment, he is able to enjoy life again.
Both turned to Respond - Northern Ireland's leading independent supplier of stoma and continence prescription services - which has recently launched a personalised home delivery service.
Julie Stevenson, (25), from Ballymena, is a schoolteacher in Antrim. She is engaged to Tomothy Bamber (28), from Ballymena, a desktop engineer.
I was just 13 when I had surgery for a stoma having suffered years of excruciating pain due to Crohn's disease. It was a relief to have a stoma. Despite the fact I initially struggled as a teenager to come to terms with living with a colostomy bag, having a stoma so young helped me to cope.
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.
Crohn's was the thing that held me back rather than the stoma. My life is better now and I am not constantly worrying where the nearest toilet is or how to deal with life while being in terrible pain.
I have managed quite well and believe that getting the stoma at a younger age helped as I was more adaptable to change. Before the surgery I had tried medication and various other routes to no avail, so when I got a stoma my quality of life improved.
My main concern after surgery was worrying about what other people thought. I was a teenager so I was concerned about how it would affect my personal life and going on holiday.
While my first trip with friends was a little nerve-wracking at the start after I told them about the stoma I felt instantly better. They were fine and surprised they didn't know already.
I did worry about what a boyfriend would think, but then I quickly realised that if someone had a problem with it they weren't worth having in my life.
I'm getting married next May and my fiancé has been with me through hospital appointments and sickness. When we got engaged in July neither of us could wait to set a date.
Living with a stoma is the norm for me and I couldn't really imagine life without one now. I have had it for as long as I didn't have one. There is a stigma on people living with a stoma and many don't want to talk about it, but things are improving.
It's great that some supermarkets have changed the signs on disabled toilets to highlight the fact 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 for the additional privacy.
There are still misconceptions with some assuming that stomas are noticeable and people like me always have toilet issues when they don't.
My advice to other sufferers is to stay positive.
It is not the end of the world. My experience has been a positive one and yours could be too. Don't let it stop you from doing anything. Technology has advanced so much that it makes living with a stoma easier."
Joe Davison, (68), is a retired lorry driver and widower from Antrim with grown-up children and six grandchildren. He came through a horrendous six years suffering from ulcerative colitis and was gravely ill in hospital when stoma surgery saved his life.
At one point I tried to cope with my colitis by not eating to try and curb my need to constantly go to the toilet. My weight plummeted to just six stone and I spent six months in hospital and was fed by a drip.
Now I am enjoying life once again, having spent six years in a lot of discomfort with stomach issues which ended in hospitalisation.
I was running to the toilet all the time. I used to drive an articulated lorry delivering fruit and veg all over Northern Ireland.
I was going to the toilet so much that I had to plan my delivery schedule very carefully so that I would be near a toilet as I was going up to 10 times a day.
Colitis meant my immune system attacked my body, resulting in flare-ups which were difficult to cope with.
I started to tell myself that if I didn’t eat too much I wouldn’t need to go to the toilet as often.
I dropped from my usual weight of 11 to 12 stone to six stone which was half my weight and ended up in hospital.
I was scared to eat and it comes to the point when you don’t want to eat, so your mind plays tricks on you.
Eventually they had to operate to take part of my bowel away. After surgery, though, the tail end of my bowel fragmented and started poisoning my whole system and my body started to shut down.
I had to have emergency surgery the next day and it was horrific, my finger nails dropped off and my hair became like a baby’s.
That was six years ago and I left hospital with a colostomy bag which I struggled to cope with until four months ago when I contacted the Respond team.
When you get a stoma at first it feels like the end of the world. You think you are the only one with this issue but there are thousands of people who have one.
Eventually it becomes natural and you just get on with it, but it is difficult. Lack of knowledge about the subject and the lack of support were the biggest difficulties for me.
A big problem was leakage, especially if you get a leak during the night which ruins sheets and potentially your bed.
As well as that, I couldn’t go out for a meal or on holiday because of it.
I was experiencing leakage up to five times a day which was incredibly embarrassing.
I couldn’t go on trips with my family or friends and do the sort of things that make life fun and that most people take for granted.
I was always turning down offers to go on trips with the kids which I know upset them and me, so it impacted negatively on my family life as well.
I had to really plan even for simple things, like having a shower, due to leakage.
Since connecting with Respond, though, I am able to take up all the offers I have time for — it has doubled my quality of life.
The nurse gave me different bags and lots of choices I didn’t even know existed.
I used to try and patch up my stoma myself using plasters and other things which never worked. I don’t have to do that now.
They’ve given me my life back 100%. There is a general lack of knowledge about what it is like for people with a stoma and I would like to see greater awareness.
Stoma nurses do a fantastic job but aftercare is vital in order to ensure patients are coping.
A house call every few months would vastly improve the ability of stoma patients to enjoy life more.
These visits could help others avoid the years of bad experiences I had.
One of the biggest misconceptions is that patients won’t be able to handle the waste. But you get used to it and it’s better than the alternative — not living.”
For more details on Respond visit www.respond.co.uk or tel: 0800 028 6848
For support in Republic of Ireland visit www.isccna.org