Interview 52

Age at interview: 65

Age at diagnosis: 35

Brief Outline: Diagnosed with colorectal cancer 1971. Under went surgery and a permanent ileostomy.

Background: No details given.

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Before his diagnosis he had been feeling restricted by his frequent need to use and be near a toilet. He was unable to enjoy life and his family, and experienced a great deal of pain for a few years. He was initially misdiagnosed with appendicitis. After a hospital visit confirming that it was not appendicitis he went privately to see a consultant and was diagnosed with both severe ulcerative colitis and colorectal cancer. He underwent a permanent ileostomy operation to remove his lower bowel. 

 

After his operation he felt extremely low and like it was the end of the world. He described himself as feeling unclean which soon disappeared after learning his aftercare routine and dealing with the change in lifestyle. He found that he was not prepared for some of the effects that the bag could have on his life, practically and romantically. He found it hard to adjust to the idea that he and his wife could lead their relationship as normal. He felt less attractive but he found the support from his wife invaluable and that the benefits outweighed any insecurity. He also found that he would experience the physical need to use the toilet which would only be alleviated by acting out the process.

 

After being visited by members of the Ileostomy Association he gained a lot of hope. He adjusted to his new lifestyle wearing the bag and realised he could lead life as usual. He felt relieved that his life was beginning to come back to what it was before he was ill. He later joined the group where he was able to talk about and share his experiences with other ostomists which he found comforting. 

 

He was determined to keep fit and became very physically active after the operation taking up a number of sports such as diving and skiing. He only experienced a few minor issues with his bag when leaving the water after diving due to pressure which were easy to manage and soon weren’t an issue due to advances in technology. He felt like he had been born again and was able to enjoy spending time with his family which he hadn’t been able to do for 6 years. He decided to be open with everyone about it because he felt bottling it up would lead to more problems than being honest. As a keen diver after the operation he had no problems in showing his colostomy bag in the communal showers and thought it would help the other divers realise that it is not the end of the world. He felt as though he could do anything and that the ileostomy did not make a difference. He found that his life was fuller after the operation than it had ever been before.

 

In the 90’s he experienced a prolapsed stoma which he found frightening at the time. He was afraid that he would have to have another ileostomy operation and did not want to go through all of that again. However, it was corrected by a simple procedure that did not involve surgery and was not painful.

 

He has had other health problems to cope with since being diagnosed with ulcerative colitis and colorectal cancer, which led him to stop diving. However, he has taken up other hobbies and is focussed on spending more time with his wife and enjoying their life together.

 

Having a permanent ileostomy for colorectal cancer leaves him feeling unclean; he believes that...

 

I think psychologically they don’t tell you the effect it can have on you.

 

What is the effect?

 

The fact is that when you’ve got that stoma you feel as though you’re a bit unclean, it’s a bit unfair for your wife of husband, if ever it, whatever way it is, like sexually, to think, oh, you must look an awful thing with that bag hanging on you. I think that is for every person their own individual thing, you know. I mean it could be repulsive for the partner I should think. And my wife says it doesn’t make any difference to her; whether she’s just being kind to me I don’t really know, but I mean I’ve only got her opinion on that.

 

But I should think it must be a horrible thing. Nobody ever mentions that to you when you’re having the operation, or had the operation. I think it could be a big thing on a younger person. I mean, I was a bit, well getting more middle-aged I suppose when I had my operation. But for a younger person I should think it could be rather, oh I won’t get a boyfriend now, I won’t get a, nobody will want to see me anymore.

 

After recovering from colorectal cancer treatment he joined the Ileostomy Association and visited...

 

And from that I’ve been so thankful with having this operation and the success of it that I joined the Ileostomy Association and I was a hospital visitor for quite a few years. And I found that very satisfying because I could just tell people who were going to have this operation' ‘I’ve got one. I’m like you now, but I can do this’. I never said, I never told them any medical things about it, just the fact I’ve got one, everybody’s different and it might affect them in a different way, but with me I can go scuba-diving, I can go sailing and I go skiing. In fact my life is more full now than it was ever before. I’m probably fitter now than I was before because of what I’d had happen to me.

 

And for quite a few years I’ve been a, I’ve seen different people in hospital; I hope I can help them. Lots of people have changed their opinion of being, having this horrible operation, it isn’t as bad as you think it is, nowhere near as bad. You always think it’s going to be, you’re the only one' why me? And, everybody gets that, but in the end you come through it and you’ve seen somebody who’s got it.

 

As opposed, you’re told by a medical person that, ‘Oh yes, you will be OK’, and you think, well yes, you say that but you haven’t got it have you? But when somebody stands in front of you in a lovely, a little trouser suit with not a bulge showing anywhere, I mean that gives you a lot of confidence.