Interview 15

Age at interview: 38

Brief Outline:

Was admitted to ICU three times in 2004 and spent, in total, about 1 month in intensive care. Spent several months in hospital, in different wards and had a hospital transfer. Was diagnosed with Crohn's Disease and, shortly afterwards, had an ileostomy.

Background:

Occupation: finance officer. Marital status: divorced. Number of children: 1. Ethnic background: British-Caribbean.

She was adamant about being taken outdoors as she'd been in hospital for so long.

And I had, because of the oedema there was pressure on my lungs and that's when I was taken into ICU. I think the day before they were going to take me to ICU I do remember saying I wanted to go outside because I'd been in the hospital for so long that I couldn't remember what outside is like. And it was a... I didn't throw a tantrum but I was like adamant, "I want to go outside, get somebody to take me outside or I'm just going to go outside." And they did take me outside for about an hour or so. 

She was happy with her care but advises nurses to remember that patients are intelligent people...

From the first time I was in pain, the next, it wasn't the first time, the second night I was pain, from then on I had, everybody basically was there. I mean it was a bit of a shock to me that I'm thinking who are these doctors? I don't know these people, why are they here? But they explained why and they kept me very well informed. The doctor who I had I can't, the surgeon who I had I can't fault him. He kept me very well informed. He made sure you know, he made sure I knew exactly what was going on. He made me very comfortable, he made you know, he was very, very attentive, very good. The teams were very good so I can't really say that I needed anymore, counselling.  

The only advice I would really give is probably to nurses in there is that we may be temporarily, you know, invalids but that doesn't mean that you don't have a brain and I think they should be aware of that. We don't, before we became ill and, you know, incapacitated, it didn't mean we were stupid. We're still not stupid because we're lying here and unable to move. That's the only thing but oh, I don't know. For me I just needed that time away. 

She asked her family to find out more about Crohn's and looked on the Internet when she got home.

The information was there, it was once, if I asked they told me, it wasn't a problem. It got to a stage where they used to come and ask me because if they used come and check my blood level, this that and the other, they used to say, alright then [participant's name], what is it? Because I made, I think because I was out of it in a sense where I didn't have the opportunity to know exactly what was going on, the minute I was able to regain some control of my life, I made sure I knew everything that they were doing, why were they doing this. If there was a new medication I was given, why? Get the doctor to tell me why. I'm not just taking it because you said well I've got to take this. 

The only problem was with the Crohn's, I think because it's such a hard disease to explain, that's the only thing, the problem that I had. You know, you asked certain questions and they're still not answers that they can give you so'.

Did you look for any information once you got out of the hospital?  

Yes, I did, went up and looked on so many different sites. Crohn's you know, I think, and even I found that it was just as confusing. I think going to look for it was just as confusing as when I was in hospital and they were trying to explain to me what was going on. I did look up sites. My sister, my family looked up sites. I mean it's weird, once you have symptoms of something, you look it on the Internet or whatever and you compare your symptoms to other things and I think you always go for the worst thing that's there. So we probably, we thought was it bowel cancer you know, things like this so.  

Although she no longer looks at her diary, writing it all down when she was recovering helped her...

The one question I had to ask was, did I, well, did I almost die?" And they said to me, "Yes." I said, "OK." I said, "Could I have died?" They said, "Yes." I said, "OK." That was the hardest question for me to ask. But I had to know. I think you just have to find out. Part of the recovery for me was finding out everything that happened and I had to write it down. I've never been a person to keep a diary but I had to write it down. Do I look back on the diary? No. It's, this is probably the first time. I don't look back on it, I remember, I know what happened. But at that particular time I needed to write it down and to find what happened. I think that's the best thing, just to know exactly what happened to you and, you know, and I think, you know, just, that's it really, just to know what happened to you. You know, really, not to memorialise it but just so you... 

Kind of make sense...?

Yeah, make sense of it, yeah because I think ICU makes you not in control of your life, you know. So I suppose for me, to gain control of my life, I needed to know what happened. And what, you know, how, and that's yeah, basically it, really.