I was given a booklet which was entitled, if my memory serves me correctly “Living with a colostomy”, which was a general book which I think would have been used for people who were having a permanent colostomy or having a temporary colostomy, as mine was.

So that explained about a stoma care nurse and about the services that were available for taking away any items of bandages or dressings and that type of thing. That was a general booklet which was helpful.

I think at the time I would have rather that had been explained to me by a human being rather than a booklet. Because although I thought I was reasonably knowledgeable about bits and pieces of the body, I think it was, I would have preferred that had been face-face rather than diagrams in a booklet.

But I think perhaps I didn’t understand that stoma was the method of interrupting the, the colon and I think perhaps I didn’t understand the terminology, not that that really mattered all that much, but I don’t think I understood that. So I think I would have been grateful for a little bit more personal help at that stage.

I didn’t need bolstering up about the operation, I think I really needed an explanation of what was going to happen. That would have helped me more I think.

I don’t know whether I said this to you before but over the hundreds of people that I saw in 22 or 23 years whatever it was, none of them was ever less than eternally grateful, they were so pleased that somebody could take the trouble to come along and explain this to them because it was a completely closed book to them they didn’t know and the hospital staff don’t know and the stoma care nurses don’t really know.

They’ve got of bit of learning from books but it ain’t nothing like living with it.

And when you live with one you learn that it can be quite capricious at times and it can do all sorts of things of odd things that you can’t expect or you don’t expect and really and truthfully the best thing is to find somebody who’s got one.

Now, I think that the pre-operation talk is the most important talk of all. This is the time when you know you haven’t had it yet and every odd thought can go through your mind about how terrible it’s going to be, what a terrible operation it is, what am I going to look like afterwards, I shall be a scarecrow, I shall be this, how can I manage it, who’s going to tell me about it, what happens?

So I went into hospital and I think the thing that I really was terrified of was the stoma and that to me was more scary than the actual operation.

And so he arranged for the stoma nurses to see me and explain the site of the stoma and so on and what would happen. And I was trying to block my mind like okay I don’t want to know that and I’m fortunate I have good support from family, my sister came over though she didn’t know at that time but when she came over she knew about it and I told the stoma nurse “Well you tell that, you tell that to my sister,” like I didn’t want to know it’s a matter of like saying no it doesn’t exist.

When the stoma nurse came to see you before the operation what did she explain to you about the stoma?

She brought the different types of the bags, the colostomy bag, the different bags that were available and the way it would work and how often it was to be changed. She explained all that but it was very painful.

Did the hospital, did the nurses themselves give you information and leaflets?

Yes, yes they gave me information. I mean there was quite a lot of stuff about diet after the surgery. And basically since the surgery I’ve been on a low fibre diet, so avoiding all the things that you’re encouraged to eat if you haven’t had this sort of surgery. Like you’re sort of fruit and whole meal flour, and all the rest of it. And so you know there’s a lot of information about that . They also gave me some sort of initial sort of information booklets, I think probably from Beating Bowel Cancer and Macmillan, which I then followed up and found there was an awful lot more information available on-line.

Beating Bowel Cancer have a good scheme set up where they try and buddy you up with somebody who’s actually gone through something similar, but maybe is a few years sort of kind of further on from you, and has volunteered, I can’t remember what the term they use, A friend or something like it. We did actually explore that briefly, but once word got out in the local community because I wasn’t, well I was, I was keen that people knew what was wrong with me basically, I haven’t kept this from any sort of colleagues at work or friends or family, so they were sort of kind of aware of it pretty much straightaway. I just wanted people to know because obviously it was going to have an impact on my life and all the rest of it. But through that sort of informal network I found out that somebody who I knew vaguely had actually gone through a very similar scenario to me five years earlier, and is still fighting fit and around now, and essentially sort of in the clear to all intents and purposes. So I actually didn’t pursue the sort of buddy arrangements that Beating Bowel Cancer would facilitate. Instead of that I contacted somebody who I actually knew already a bit.

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.

The stoma nurses are very good, they’ll tell you what appliance to use or what’s the best appliance. And they do say, go through different appliances to see which one suits you because one appliance won’t suit another person.

But when you’re speaking to somebody who is from the Ileostomy Association or whether they’ve, they’ve got a stoma, at least you do know that they, they know what they’re talking about for one thing because they’ve got one.

And theres a little incident, theres a friend of mine who’s across the road from here who’s also had, I think he had a colostomy I think.

Anyway he had to have a stoma, and they let him out of hospital and they thought great hes OK and then theres things they forget to tell you like if you touch your stoma it’ll bleed a lot, and bleed a lot. And they didn’t tell him this and he happened to touch his stoma and he phoned me up in panic because hes only across the road and he knows I’ve got this. And he said “Hey what can I do?”

And of course I could go round straight away and say “Oh yeah, nothing to worry about that, that’ll stop quite quickly, but if you do touch your stoma it will bleed.” And nobody told him about that. And nobody told me about that actually until I actually touched my stoma once and it bled. And they wouldn’t know that unless they’d actually experienced it would they?