Interview 35

Age at interview: 54

Age at diagnosis: 48

Brief Outline:

Diagnosed with colorectal cancer 1995, under went surgery, temporary ileostomy and a permanent colostomy.

He recalls trying to carry on with normal activities while adjusting to having a stoma.

But my social life was, was very bad because I, I, I had no social confidence. I was afraid of people smelling this stuff. I, obviously if it leaked you could smell it, but I was always concerned that there was a proper fixture and fitting on I made sure it was well adhered and of course I kept myself very clean.

No one ever said to me they could smell anything, no one ever took offence, no one ever said or moved seating if I was sitting somewhere.

And I was also involved in quite a lot of  voluntary organisations, but because of my sickness I had to let quite a few of them go. But I am still involved in, in two or three, and I'm still going to, I started going back to the committee meetings and uh, but there was always a concern about these extraneous noises from this bag, caused by a build-up of gas, and you've no control over it, I was most embarrassed the first time it happened. And of course nobody was gonna turn around and say you know, "Was that you?" or whatever.

Is it quite a loud noise?

Oh yes. Oh yes, very, it's just like someone breaking wind you know, and that, but I, it actually went on longer, if you, if you're breaking wind naturally you tend to try and stop it, this thing you've no control over. How it exudes itself.

Finds a colostomy easy to live with in comparison with an ileostomy.

After getting the ileostomy reversed I have, went back to a reasonable normality in leaps and bounds because the colostomy and the state of the stuff that comes out into the colostomy bag is a lot like your normal faeces when you go to the toilet to sit down and have a bowel movement.

And although you don't have the same control the consistency is a lot better and more manageable.

It's less liquid you mean?

It's not liquid. An ileostomy is like having permanent diarrhoea, and it really was ruling my life but once I'd got that off, who, even the psychological uh sense of having it removed was wonderful and so although I was dismayed at having a bag fitted, when I had two I was really annoyed. I was glad I ended up with one.

How long did you have the two together?

For eight months. And the colostomy during that time had given me very little trouble.

Once, I say, once I got the ileostomy reversed uh, I started to put on weight, my outlook was brighter because I wasn't too concerned about wondering would there be a toilet at the other end you know, because this thing went every maybe, couple of hours or maybe it missed a day before anything happened into the bag. Whereas the ileostomy was going consistently it was, like a leaking pipe.

Describes the benefits of the appliance he is currently using.

I'm down now to what I would consider to be mark three colostomy appliances, that's a, a two piece appliance that I've worn. There's a flange that fits on to my abdomen and then you click on the bag. So when you go to change the bag you just take the bag off and dispose of the bag, and it's kinder to your skin because you're not pulling the whole appliance off.

So I change the flange maybe every three days and uh, unless of course maybe there's a bout of tummy upset or something, I get diarrhoea or something, which is, doesn't concern me.

This is very easy to manage. I've learned very quickly to manage it. It's unobtrusive. There are substances now that you can get to squirt into the bag to make it odour-free even if there is an odour. There's a cap which fits over the filter, if maybe you do get a bit of a tummy upset and it's more liquid so you can, you can seal the filter.

The filter on the bag is, is to stop a build up of gas so it goes with away, it doesn't balloon so it's a lot, lot better and it's more comfortable.

A man who had both a permanent colostomy and a temporary ileostomy had to learn to manage them...

Again there was no stoma nurse there to explain how to manage, this ileostomy and colostomy.

I mean, for instance, how often do you change this and what about showering? No one, no one had actually told me that I could actually have a shower or a bath with these things still on.

It was a self-learning, steep-learning curve on my part. I asked in hospital for any information at all that they had that I could read up on and maybe take home, brochures and stuff like that, leaflets and what have you. 

So I took those home with me.

And then one, when I got home I got books and stuff from my local library and read up again. And I have medical encyclopaedias here and read up as well, and then of course on the internet. I went on to medical sites and sought information. 

But I must say there is now in situ a very competent stoma nurse, specialist stoma nurse in the hospital and she is, has been a great help and a great assistance to me. And I know she has been a great help and assistance to all people who have had the colorectal surgery since I've had mine.

Because it was an awful experience of having no one to teach me how to manage my uh particularly the ileostomy because I had so many accidents with it. I was devastated.

Having both a permanent colostomy and a temporary ileostomy he had to learn to manage them with...

Again there was no stoma nurse there to explain how to manage  this ileostomy and colostomy.

I mean, for instance, how often do you change this and what about showering? No one, no one had actually told me that I could actually have a shower or a bath with these things still on.

It was a self-learning, steep-learning curve on my part. I asked in hospital for any information at all that they had that I could read up on and maybe take home, brochures and stuff like that, leaflets and what have you. 

So I took those home with me.

And then one, when I got home I got books and stuff from my local library and read up again. And I have medical encyclopaedias here and read up as well, and then of course on the internet. I went on to medical sites and sought information. 

But I must say there is now in situ a very competent stoma nurse, specialist stoma nurse in the hospital and she is, has been a great help and a great assistance to me. And I know she has been a great help and assistance to all people who have had the colorectal surgery since I've had mine.

Because it was an awful experience of having no one to teach me how to manage my uh particularly the ileostomy because I had so many accidents with it. I was devastated.

He suffered sexual dysfunction after surgery.

And there's also another concern which no one explained to me, and no one's ever explained to me or tried to explain and that was the intimacy side, of, and the consequences of having colorectal surgery.

It did affect my, sexual side of my marriage and I had to go and seek, counselling for that and I had to go and seek and get medication to help me perform sex and intercourse.

Although having said that I, I don't really need to use it as often as I did because I'm starting to get back to a reasonable normality. I mean for a man of 54, I'm looking for quality rather than quantity!

But I think there should be more openness from professionals in explaining, cancer. And what the procedure that they're gonna perform on you, involves, what they're gonna take out, what the implications are for the future and what they've done for you. Particularly in my case, the sexual dysfunction.