The ileostomy didn’t worry me at all. I’ve a mother-in-law who’s been an ileostomist for probably 30 years now, and shes well on into old age, well over her 90s now. And shes managed successfully and also I’ve got a very good friend and neighbour who has also been an ileostomist and I knew that he was more physically fit with his ileostomy than I was without one. So, I’d no fears about that at all. I was lucky, in that respect, that I had no fears because I knew about them.

If you didn’t know anybody who had an ileostomy do you think it would have been a daunting prospect for you?

Yes, yes I think so. I think it would have been simply because in my opinion there is such an attitude towards people who have a stoma and have to wear a bag, for whatever reason it’s sort of not accepted socially.

And it’s ridiculous, totally and utterly ridiculous that is. You, you know you might as well having an ileostomy is in my opinion less of a stigma than having athletes foot, and I would put it as simply as that.

The psychological aspect to me anyway was “how the hell am I going to manage this thing when I get out?” because as I walk down the street everybody is going to point to me and say “Look hes got a bag on his belly,” and this was actually how I felt about it.

And it took me a couple of weeks of walking around in the street and nobody took the slightest bit of notice of me at all and therefore you know I’d just imagined this.

So it didn’t take long to throw that one away and dismiss it because it wasn’t so. Everybody is a different person and therefore it has a different psychological effect on anybody I would think.

The only thing is to know what is likely to happen and know that these things will come along and you either can or you can’t handle them, that’s just the point.

I think the worst fear was that I wouldn’t be in control of my bowel movements and wearing a bag it could be very embarrassing. I was very aware of wherever I was going and I was, that was one of my worst fears’ Would I be in control, or would I have an accident or would anything go wrong?’

It wasn’t so bad at home but at work, being in meetings so frequently, seeing patients, as well as socially it was very embarrassing and I was very, very aware of that all the time, yes. So while I was determined to live I was experiencing a lot of distress in the first few years, especially the first year.

Was the fear actually worse than the practical reality of managing it?

Yes I think it was, I think the fear was worse. I was always aware of odour or, I just generally felt very self conscious. I’m a person who’d been quite competent and confident in the past and here I was very, very self conscious, very aware of myself, asking my husband “can you smell anything?” you know all the time “can you see anything?” the whole time.

I changed clothes for the first year or two wearing fuller clothes because I was worried that the bag would swell or it took me a while to adapt and accommodate to the change in me.

I couldn’t get used to bowel movements coming through the front of the body, it horrified me. But eventually I got used to it. I think when I started irrigating and I felt a sense of control and cleanliness come back into my life, that made a very big difference.

I thought to myself, blimey am I going to cope with this I can’t, you know, because I’m a very fastidious man and it couldn’t have happened to a worse person than me because I’m very fussy, cleanliness is very, very important, but on reflection, sitting back and thinking to myself what alternatives has one got, you’ve got to cope with it because otherwise theres no other way out.

You never think that you’re going to be able to put the appliance on, wash yourself, see to yourself, look at it, do it.

I couldn’t look at it, I couldn’t look at it and they knew that so my stay in hospital was an extra week because of that situation. But that was difficult.

But after a few times going to the bathroom with the stoma nurse and she put you through a kind of regime. You have to get things prepared, wash, get your appliance ready, get the stoma paste ready, to apply it and all the rest of it, and you go through all this, all of a sudden this becomes a ritual and you start doing it yourself and you become quite amazed and you become quite good at it. So by the time I left the hospital I could handle it.

And how did you feel about having a stoma?

Oh terrible, I still do.

Do you?

Mm I know it might sound silly to someone else but I never feel clean. You know I mean, well I have a bath every morning but I dunno I just don’t ever feel, like while theres nothing in it I’m alright but as soon as it works I just feel as though I’m dirty.

Like it’s a horrible feeling really I just like and as I say if I’m in company, and it’s not so bad now because obviously I basically know what to eat and what not to eat, but at first I didn’t and oh the noises it used to make, it used to be horrendous and I used to feel so embarrassed.

Like my niece got married in May and I dreaded it, as much as I was looking forward to it, shes my goddaughter, I was dreading it because I thought I bet this will go wrong, I bet that’ll go wrong, I’ve always got that fear.

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.

I was absolutely horrified by the stoma initially. And, I couldn’t bear the stench of it initially and I didn’t want the stoma nurse dealing with me. I wanted very quickly to deal with the stoma myself and, and as much as she said to me that she was well used to it I, I found it too much of an invasion of my privacy for her to be dealing with the stoma and to be dealing with the very unpleasant smell that my body was, was giving off at that, at that stage. You know that my excretion was highly scented.

So you’re talking about when the bag was being changed?

Yes.

Not all the time, but when the bag was being changed?

No, no, just purely when the bag was being changed. So I think within one or two days I was dealing with it entirely myself and that initial smell that was in, in the bag very quickly went and I think it was purely because a lot of the system had been lying dormant for a period of time and it was when, see when you have this operation one of the things is that your insides fills with quite a lot of gas.