Harvey - Interview 9

Age at interview: 63

Age at diagnosis: 56

Brief Outline: Harvey was diagnosed with Crohn's Disease aged 17 and had three resections on his intestine. At 56 he was diagnosed with bowel cancer and had the lower part of his bowel removed in a major operation. Harvey would like more support to manage his condition.

Background: Harvey is a retired primary school teacher (and continues to do some supply work). He is married and has had two children. Ethnic background/nationality: British Jewish

More about me...

Harvey, a primary school teacher, and his wife, also a teacher, live in the West country. Harvey describes a childhood suffering from stomach pains and was diagnosed with Crohn’s Disease at the age of 17. In his thirties he had a gall bladder operation followed by a series of resections on his intestine. For several years after each resection he felt very well. In 2001, after Crohn’s had ‘reared its ugly head’ again, Harvey had a radioactive breath test followed by a six week course of different antibiotics. A few months after this treatment, Harvey experienced anal bleeding and was diagnosed with bowel cancer. His lower bowel was removed in a major operation and he now has a colostomy bag. It took Harvey a year to recover from the operation and while he has grown accustomed to living with a stoma, he does not like it. The Crohn’s remained after the operation and Harvey now takes Budesonide, a steroid, and has regular B12 injections. Since his operation, Harvey has had a few acute intestinal blockages and has needed hospital treatment.

 

Harvey talks about the indignities involved with having Crohn’s; always needing a toilet nearby, invasive tests like barium enemas, sigmoidoscopes and colonoscopies, the smells and leakages. Having a colostomy has lessened the impact of some of these indignities. For example, he is now able to travel abroad more easily as the bag has reduced the need for always being near toilet facilities. There have been other side effects to the operation that Harvey would like more support to manage. He says he now watches what he eats and enjoys what he can, while he can with his wife who has been very supportive. 

Harvey feels his condition has been hard on his wife. After his colostomy he became impotent. He asked the hospital for support but was disappointed with their response.

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 succ… but 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.” 

Harvey's teacher colleagues were unaware that he had Crohn's disease because he did not let it affect his work performance.

 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.

 

Harvey is disappointed that the doctors he has seen over the years are overly focused on medication. He would have liked some counselling for himself and his wife.

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 tablets”.

 

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

Harvey was diagnosed with bowel cancer despite being told by his GP years before that it was unlikely he'd ever get it.

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.

 

Harvey was diagnosed with Crohn's disease privately, after years of ill health.

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. 

 

At first Harvey had many accidents with the stoma bag until he looked around for another type of stoma bag which worked better for him.

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. 

 

In Harvey's experience illness and Judaism seem to go hand in hand. But the thought that his illness might reside in his genes makes it somehow easier to deal with.

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? 

Harvey trained as a teacher and held down a high-energy job despite his Crohn's. Over the years he has got used to dealing with mishaps, even if at times it can be traumatic.

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 bit… well 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. 

 

Harvey feels he didn't make it on 'a big scale' because he never had as much energy as other teachers.

Anyway, so I’ll carry on. I went into teaching and I managed pretty well. I think one of the drawbacks with Crohn's Disease is you do get very tired and teaching is a high energy job, and I think one of the reasons why I didn’t really make it on a big scale, although I did quite well, was because I tired quite easily and never had quite as much energy as other teachers. 

 

And I think it was in my early thirties that I’d had some problems, which eventually the doctors found out was due to gall bladder stones and I had a gall bladder removed. And that was the first of a series of operations. After that I had intestinal problems with the Crohn's Disease. I had blockages, which again dogged my teaching career. And I had to have, I think, in the end at least three resections on my intestines. Little pieces cut out to alleviate these blockages, to stop them happening. 

 

Have you ever worked out whether there’s a particular affect that make the flare-ups happen or not?

 

Well stress can affect it, and probably [laughs] teaching is not the best job in the world to be in. I know there is one class I had which was just a very, very tough class, very hard work indeed, and towards the end of the year, the stress was getting quite strong and quite heavy, and my stomach was suffering, and indeed, I think before the end of term I did end up in the hospital. And I think that was one of the times when I had some treatment. 

 

Although, the first operation I ever had, was when I was teaching in [town name] so whether that was a stressful period or not I don’t know, but I remember, there were several occasions when I’ve been teaching when I’d been in pain and I’d have to go and sit in the men’s restroom and I would be unable to return to the classroom. And it would be covered by somebody else.

 

And I do remember in the last few years when I was teaching, there wasn’t a day when I wasn’t in some sort of pain. In fact, it got so much that I was actually used to going to school and teaching with the pain. I’d got myself into a state where I could deal with it and kind of ignore it in a way. But I was always kind of aware that the pain was there, but I was determined to carry on with the job. And I would still have been doing that if it hadn’t been for the fact that the cancer came along and put a stop to that. 

 

Harvey has adjusted his diet over the years but nothing seems to help him put on weight.

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.