64 years with a stoma

64 years with a stoma

Have you ever thought about when you were taken ill? Isn’t it amazing what our bodies can survive.

I was just 13 when l got the first twinge, it was on the way to school. This is not right what’s happening here, l thought and by the time l got home the pains were coming  more frequently. By the next day l was spending quite a lot of time in the toilet. So off we went to see our doctor friend, who examined me and said l have eaten something that had upset me. Great l thought, how come my parents were alright. It was about a week later and l was feeling bad and the symptoms getting  worse. The doctor said “l will have to get you into hospital as l’m not sure what you’ve got wrong. There and then he called for an ambulance and l was taken to Hendon isolation hospital, where l stayed for 2 weeks and no one knew what was wrong with me. By now it’s the middle of May. My next stay was at Edgware General. Things really got worse here. Everything, all the bad points started happening. I was loosing a lot of blood, in fact l had 12 pints while l was at this hospital, and 3 relapses.

The doctors here were getting worried about me as they had tried  everything, so they called a specialist from the Middlesex Hospital in London. We are now in September, l had no idea of time, l just knew what the pain was like and l didn’t like it. By the end of the week l was in the back of another ambulance going to a different hospital. Again they tried medication this was no good, so on 31st October 1957 l had my operation. I went to theatre at 12am and didn’t know anything till 12pm the next day. When l woke up there was a doctor standing at the end of my bed and said “everything will be alright now”, what did he mean! I didn’t know what they had done to me. I had a drip inserted into my arm feeding me with blood, someone tell me what’s happened l thought.

There were no stoma nurses to tell me anything that might put me at ease. When the surgeon came round later that day he told me what they had done. This was the beginning of another struggle. They had left a portion of the infected bowl to heal, but would it? After 18 months it was still causing problems, so they removed everything. At this time all the equipment was horrible. The bags where heavy rubber and a screw at the bottom to drain the contents out. We didn’t know any better cause there wasn’t anything else. I then had a fistulae that needed surgery every year for the next 6years. Growing up in teen years was a little difficult but l managed. My biggest problem was meeting girls. I would tell them at the second meeting what l had, and if they couldn’t accept me l would just say Good Bye. Maureen my wife for 54 years has been “Wonderful”, we have had a great time and nothing has stopped us from enjoying life. We have 2 great boys. One lives in Canada and the other son lives a couple of miles from us. They have blessed us with 2 grandchildren each, which we love dearly, but miss the Canadian girls but see them on face time every weekend. Isn’t technology wonderful today! We’ve travelled quite extensively and l haven’t let the bag hinder my enjoyment.

Once you find a stoma bag that suites you keep using it. The style of stoma bag l use has been about for the best part of 50+years as they are still producing them ( I hope they keep going for many more years). If someone ever asked me would l like to revert back to normality, my reply would be no thanks I am very happy the way l am, how about you! I forgot to mention my stay in hospital finished on Christmas eve, that made 8 months , l also had 2 weeks away on convalescence as the hospital had a home on the east coast.  My aim is now to help as many people as l can.

When l was younger I donated 50 units of  blood and was awarded a gold Badge. As I am a rare blood group, I had a phone call one morning  asking me to come in as a baby was having an operation and needed some extra blood. That gave me an lot of satisfactions to help someone.

I hope you found this article encouraging, don’t hold back just go about your life and don’t let your bag stop you. Travel, go to the theatre visit a restaurant. I wish you all well and a happy, long and safe Life.

  • Hi Barry,

    What an amazing story of strength, resilience, acceptance and love. Thanks for sharing your story with us. The big didn't prevent you to enjoy your life. Best Wishes, Luciana

  • Hi I have had ileostomy since Friday 13 Sept 1968 (age17) after being treated for UC since 1964 with remissions in between.  I too remember the white chiron rubber bag and the black with screws for drainage.  The mini skirt was in then and my bag was just an inch or 2 short of my hem!! As you say - no stoma nurses then - former patients helped to advise as I did when I was called on tho visit. Thankfully I've kept well since and wouldn't swap my bag for all the tea in China!  My big step to the modern bags came when I changed to Eakin bags which I used for 34 yrs  til they stopped manufacturing them. After a few different samples I eventually settled on Coloplast sensura Mio and I'm now going to try Pelican ModaVi. My how times have changed in the last almost 53 years.  best wishes to you