Oh I have changed my diet. I avoid lamb only because one time when I ate lamb, the day afterwards I had a blockage. I mean the lamb could have been innocent, but I don’t know. So I avoid lamb. I avoid any tough meat. Chicken’s alright. Most vegetables, citrus fruits I am a bit wary of. That happens a lot; gurgling. Eggs, I, I love eggs but I can’t, they don’t agree with me. They actually can cause quite a lot of stomach irritation and pain. If it’s in like scrambled eggs or omelettes, but cooked in a cake, that’s fine. That doesn’t cause any problem. So I avoid eggs. I have kind of adjusted to the things that I know are a bit dodgy.

Nothing seems to help me put on weight. Even the dietician, who tries, she says, Well we’ll do a high fat diet again like I did in hospital. So she said, You can eat as many doughnuts as you like, as many cakes and biscuits and bread It hasn’t helped, I haven’t noticed anything. If anything I’ve lost weight. You know.

Now there was a period when my wife said I was looking quite gaunt. And I looked in the mirror and thought blimey, yes, you are. But I don’t, and my consultant that I see occasionally for a few minutes [laughs] will say, You’re never going to be fat, Harvey And that’s it. You know, I don’t want to be fat. I just want to put a bit of weight on. But really, realistically with the state of my intestines, I don’t think I’m ever going to put any weight on. It just goes through too quickly.

Good. Anything else about the colostomy?

it’s – as a piece of medical equipment it’s extraordinarily unpredictable. it’s, you know, what you have is, you know, this bag, this has to stick over the stoma and, in my innocence when I first had it, I thought oh that’s quite good. And I had so many accidents, which was very embarrassing. And I learnt to deal with it pretty early on. But I had to sort things out for myself. And at first when I first had it, I thought that the bags I was being supplied with were the only ones available, because they were supplied by the nurse. And I later discovered that certain suppliers supply the Stoma Departments with their bags and they hope they’re the ones you’ll be using forever and ever amen. But these ones that I was using in the first instance were so bad, and I was having so many accidents that I eventually found out that I could experiment and try other things. And I ended up with this particular bag that happens to be an American one. it’s very old fashioned, it’s, you know, very cumbersome, but it actually works quite well. Then the company moved their [laugh] their equipment and manufacturing to the Dominican Republic. Since when they’ve kind of deteriorated and they’ve not been as good. So I’ve had to come up with new ideas for dealing with it. You know, on my own.

Is it the fit that’s the problem or is it the actual quality of the bag?

it’s a bit of both really. I mean the fit is, very difficult, because the stoma where it protrudes through the skin changes in size. it’s never quite the same size. So, you know, if you’ve got a particular cut and it grows, you are going to oh oh, so you have to cut it yourself to fit. And then you find that actually, it, it goes over the stoma but it doesn’t fit properly on the other, at the end because where it comes out of your body is smaller than the stoma size itself. And that can cause leakages. But I’ve devised a system where I use these kind of small flanges that you stick on. The first one was okay, but now that’s started to produce leaks. So I’ve now got two on top of one another, but just slightly offset, so they cover all the area to ensure it doesn’t leak. And what’s the word I’m looking for? A bit of a to do to get round the business of making sure you’re secure.

And this is something you’d have to do the eight, ten times a day to make it secure?

Oh no, no, you only need to put it on once in the morning and if it’s a good secure fit, which it now is, we I have only discovered after a couple of days, you can leave it on for a couple of days. If it’s not a secure fit, you have to change every morning or every evening. I mean sometimes, I might need to change once or twice, or may be three times a day if it doesn’t work properly. I mean I have woken up at night and there’s the thing completely off my body, with awful consequences. I won’t describe it. it’s horrible [laughs].

Is it a constant concern even when you’ve got it fitted and you constantly aware of the fact that something might go on?

Yes, I’m a bit more confident now that I’ve worked out what I have to do to solve my problem.

I suppose only in the sense that illness and Judaism seem to go together. You meet so many Jewish people who have so many health problems. it’s almost like if you’re Jewish you’re going to have health problems, you know, and yet I know a lot of Jewish people who are perfectly healthy and fit and well. But it does seem to me that a lot of Jewish people that I know do have health problems and some of the problems are quite major. it’s something you live with I think, because it’s almost a hereditary thing and within the genes it sometimes makes it a bit easier to deal with. You know, you are stuck with it. These are in your genes. Does that make sense?

The Crohn’s Disease is still there. And the bowel works frequently so that I have to empty the stoma bag, could be somewhere between eight and twelve times in a 24 hour period. Which is a bitwell I’ve got used to it as I say. But it means that if I travel I have to be a bit careful. I have to try and make sure that I’ve got supplies, and possibly a change of clothing with me at this time. It hasn’t stopped quite drastic accidents happening which again I’ve kind of got used to dealing with. However traumatic, it’s a case of having to, and so you get on with it.

Okay. So my childhood was dogged by my father’s mantra, which was Have your bowels been opened [laughs] And I suppose I became a bit paranoid about that, so I have a strong suspicion that my father’s paranoia about having one’s bowels open transferred to me. And, whether that affected my subsequent history I don’t know, but certainly as a child I suffered from stomach pains quite a lot, and this got progressively worse when I was at the secondary school, which I didn’t like. In fact I hated secondary school.

So any excuse to have the day off was something I took very easily. Whether it was bunking off or just being genuinely ill I’m not sure, but that’s what I did. But it got worse and worse, so that even though I managed to get into sixth form I didn’t stay for the full course. I left in my first year, not exactly ignominiously but it was something I wasn’t particularly proud of.

I managed to get a job at Unilever in an office and they said, As long as you’re not ill or anything, you’re okay But I was constantly being ill with diarrhoea and stomach pains. So I had been under [hospital], which is quite a famous hospital for gastrointestinal problems. But they never seemed to be able to pinpoint what my problem was. And eventually they, kind of washed their hands of me, and their parting shot, or the parting shot of one of the doctors as I was leaving from my examination was, Oh by the way, don’t drink so much And I didn’t have a clue what he meant by this, whether he meant don’t drink too much alcohol, which I didn’t anyway or just don’t drink fluids. But that was all he’d left me with, you know. Off you go into the great wild world and don’t drink too much.

So, nothing improved, whether I drank or not anyway. So eventually my sister, [sister], who was a nurse at the time, suggested I go to a private doctor. At that time I thought wow a private doctor that’s something like £5 an hour’, which was almost two weeks of my then wage. But I did go and I saw a [doctor], who interviewed me, examined me, and arranged for me to have an X-ray on the NHS and he called me back after the X-ray was done and completed and said, You’ve got Crohn’s Disease Just like that, and I’d been going to [hospital] for I don’t know how many months or years even, and they’d never been able to diagnose anything, but as soon as I went privately, I was diagnosed with Crohn’s Disease.

Are they aware that you had Crohn’s throughout your working life?

I don’t think so, no [laughs]. I really don’t. I suppose they knew that sometimes I was away ill, but no one ever went into… and I suppose the only time they really sat up and took notice was when I actually ended up in the hospital and was off work for a year and then had to retire. That’s when they suddenly realised and maybe not even then, they just thought oh he’s got cancer and that’s it, boom, boom, boom. I don’t think anyone was aware that, because I tried to continue to do my work to the best of my ability. And I suppose maybe I got away with it.

And do you feel that not being informed is a result of the doctors not really knowing or poor communication?

I’m sure it is, yes. Yes. I genuinely think that they are not quite sure what to do. it’s got to the point where anything they do is a big dodgy as far as my future health is concerned. So it’s like the status quo can be maintained.

Why do you think it took them so long to actually get to the point of acting then?

I don’t know. Because I’ve had this so long, over this period of time, I’ve been seeing a series of different doctors [laughs]. And with one doctor in particular, as long as I turned up, and appeared to be walking, talking, and breathing. That seemed to be okay. And he’d say, Oh you’re looking well, jolly good. I’ll see you in three months time or whatever And you know, maybe I should have complained and nagged and gone on about it, but I was always glad of, and quite happy to be active, and walking around and teaching and doing what I was doing.

And maybe I never laboured the discomfort that I felt. But the fact that I was there, seemed to be okay. And, and, an excuse for them to do nothing [laughs]. You know, it was like keep taking the tablet.

And don’t drink too much.

Oh no one’s ever said that again. That happened until I was, as I say with this gentleman in Cornwall who funnily enough after this incident of having the nuclear stuff that I drank and breathing in and then seeing the junior doctor rather than the consultant as I should have done. And then seeing the consultant and him getting, arranging the colonoscopy and ringing me up and telling me to sit down after that, instead of keeping him I got another gastroentologist. It was almost as if, you know, I don’t know whether I’m putting two and two together and getting a four or five, but why did they change. Why? Was he feeling guilty? Did they think I’d kick up a fuss? It was strange.

Have you thought about taking that further and asking?

No, because they, they just stonewall you there. You know, it’s, it’s a bit like an old boys’ network isn’t it? You’re not going to speak up against another doctor. So
Well they just, their answer is to give me tablets. In the first instance, they are okay, you know, Viagra. Okay. It seems to work, but not terribly well. So I went back and I said, Who can I see And they sent me to the urology department . He gave me some different tablets. Well that wasn’t really dealing with the problem at all, because actually it was the same tablet, but a little bit stronger. It wasn’t addressing my needs at all. And then I went and saw the colorectal nurse and had a frank discussion with her, and she said, Oh I’ll talk to a clinical psychologist And then she rang me and said, Well he suggested, well rather than go to see a clinical psychologist we’d go to Relate

What you and your wife?

Yes. And I thought well that’s passing the buck a bit isn’t it. So I feel a bit disappointed with them, that kind of you know, an operation like that it’s, it’s intensity, I would have thought requires some degree of counselling [laughs]. You know the stoma nurse comes and tells you this is going to happen, that’s going to happen. This is what you do. Blah blah blah. End of story. And that was it. That was all the counselling.

Does she goes through the practicalities?&nbs

Then in 2001 after a series of investigations to try and sort out the Crohn’s Disease problem which continued to rear its ugly head again, and this involved having a radioactive breath test, which was a bit dodgy, and breathing into these tubes for twenty four hours and they were able to determine that there were a series of very nasty bacteria in my gut. And the way to deal with this nasty material was to have a six week course of different antibiotics.

Now I persevered with this over the summer holidays, what an idiot I was, I should have done it in term time, because it was just awful. It was an awful summer holiday because it was just like diarrhoea only magnified by five or six times, because these antibiotics were going through me and washing me out completely.

Anyway at the end of the course, things did actually improve dramatically and I felt really, really well. And I thought whey this has done the trick. And then a couple of months later I started bleeding from the back passage and bleeding and bleeding and I went back to the consultant and unfortunately I didn’t see the consultant. I saw a junior doctor. And junior doctor said, Oh well, we’ll do a blood test And the bleeding continued for another couple of months I think.

In the end urged on by doctors I knew I made an appointment to see the consultant and I insisted on seeing the consultant this time. And as soon as he heard what was happening, he arranged for me to have a colonoscopy and from that it was discovered that I had a small cancer in my lower rectum.

And I said, Well this is amazing. I was told years ago by my GP that because I had Crohn’s Disease it meant that I was unlikely ever to have cancer of the bowel And the reply I got was that they’d changed their minds and now it seems that if you Crohn’s Disease you’ve actually more likely to get bowel cancer. So that was a bit of a blow.

And, because the cancer appeared in the lower rectum, it mean that the operation I would have for this would be pretty drastic and involved the whole of the lower part of my bowel being removed everything my back passage disappearing completely, it was sewn up and being fitted with a colostomy.

This was a pretty awful thing to contemplate and I said, What would happen if I didn’t bother to have the operation And the surgeon just shrugged his shoulders. I mean he could have been a little more eloquent, but I suppose that said it all really.

Does it make you feel so different having it?

No. Well yes. Yes, definitely. You feel a bit, I don’t know, not exactly robotic but you don’t feel like a normal being. There was, I mean, the added misfortune in having this, because it was such major surgery, I mean, the surgeon didn’t warn me that there was a 20% chance of becoming impotent. Well I reckon there was a 100% chance to be honest. Because I have been and they give me tablets, but not terribly succbut apart from anything else there’s the feeling that you don’t feel very fresh and very clean. You’re stuck with this thing. it’s there. And because of the Crohn’s Disease it’s, you know, you go to bed, and before you go to bed, you have to go to the toilet. During the night you wake up and you have to go to the toilet. First thing in the morning you wake up, you have to go to the toilet. it’s not really conducive to the sorts of things you might normally have done. You know. So very, very tough on my wife, and very unpleasant for me [laughs]. But well, I’m just saying the hospital didn’t do terribly well.

In what sort of ways?

Well they just, their answer is to give me tablets. In the first instance, they are okay, you know, Viagra. Okay. It seems to work, but not terribly well. So I went back and I said, Who can I see And they sent me to the urology department, he gave me some different tablets. Well that wasn’t really dealing with the problem at all, because actually it was the same tablet, but a little bit stronger. It wasn’t addressing my needs at all. And then I went and saw the colorectal nurse and had a frank discussion with her, and she said, Oh I’ll talk to a clinical psychologist And then she rang me and said, Well he suggested, well rather than go to see a clinical psychologist we’d go to Relate