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Rosalynde - Interview 14

Age at interview: 70
Brief Outline: Rosalynde was diagnosed with Crohn's disease a few months ago and has recently been put on steroids after her initial medication, Pentas salicylatem, was not effective. Rosalynde feels that the extreme tiredness she experiences is the worst aspect of her condition.
Background: Rosalynde is a retired medical representative. She is married and has grown up children. Ethnic background/nationality: Jewish

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Rosalynde, 70, started to lose weight in November 2008 and gradually felt worse until March 2009 when she was hospitalised and diagnosed with Crohn’s disease. She was sent home on medication – Pentas salicylatem – but was unable to have a colonoscopy at that point because of severe inflammation. A partial colonoscopy was conducted later which confirmed the diagnosis. Rosalynde has recently been put on steroids because the medication has had little effect. She is also on Azothiapfrinet and hopes to come off steroids soon.
 

The dietician Rosalynde was referred to was not helpful and she is now seeing an alternative therapist who has supported her with dietary changes, such as removing wheat, dairy, potatoes, raw vegetables, salad and some fruit from her diet. For Rosalynde, the worst aspect of the condition is the extreme tiredness she experiences which is partly related to erratic bowel movements. Her everyday life has changed at the moment because of the dietary constraints and her lack of energy, although she is hoping that the Crohn’s will be a single episode that she recovers from.  

 

Members of Rosalynde’s synagogue did her Pesach shopping when she came out of hospital.

Members of Rosalynde’s synagogue did her Pesach shopping when she came out of hospital.

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Well I, we’re members of [synagogue]. It’s a small community as communities go, and they are so supportive, they are wonderful. I mean everybody, I can’t tell you, I think prayers are still being said for me on a Saturday morning and everybody, I must have had about fifty get well cards. And, and I came out of hospital just before Pesach and people that I’m not even friendly with wanted to do my Pesach shopping so yes, I got enormous support from the Jewish community. And I would hope that if people are a member of any sort of group if they have this sort of thing they would get support from, whether it’s a church group or something else. It doesn’t have to be a religious group. But yes, I got enormous support and from my rabbi who told me about you [laughs].

 

Rosalynde was disappointed with the poor quality information about diet she received from her...

Rosalynde was disappointed with the poor quality information about diet she received from her...

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When you were given the diagnosis did the doctors give you enough information at that point?
 
No, nothing like it enough. First of all I asked the consultant I saw what diet I should be on. And he said, “Oh its just trial and error.” Now it is trial and error to an extent but - because you speak to some people suffering from Crohn’s and they can have such and such, whereas you can’t - but there are certain things that most Crohn’s sufferers know don’t agree with them. I mean we, my husband and I always have fresh orange juice at breakfast and the first time I had it, I just wanted to die. It was so painful. Now when I’ve spoken to the other sufferers they say, “Oh yes, fruit juice is out.” Well that must filter through to the doctors. And potatoes are another one. Wheat to a certain extent. I mean, you know.
 
I was then sent to a dietician, I had forgotten about that, who was absolutely useless, absolutely useless. I think a lot of people and I’ve certainly seen it from the web, are... combine losing weight with diet, even though it’s known that Crohn’s suffers generally are thin. I don’t know if you’ve found that.
 
 

Rosalynde’s health deteriorated while she was waiting for an appointment with a...

Rosalynde’s health deteriorated while she was waiting for an appointment with a...

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So I went to my GP and he examined me and took blood tests. I came back. He thought I was a bit anaemic and he thought maybe I had a stomach upset and gave me some antibiotics. Didn’t help.
 
So I went back again, well he’d asked me to come back and he put me on a very strict routine of antibiotics, Metronidazole which is quite strong for infections and another antibiotic, and he thought it might be diverticulitis. But again this didn’t have any effect and by which time I was beginning to look awful. I was very thin and looked really ill. 
 
And by then we were in the middle of February, because you know you wait and time goes by and you hope you are going to get a bit better and he was quite concerned and he made an appointment with a gastroenterologist at our local hospital, [hospital]. And that came through for March 19th. And this was like about the 12th February or something and he said “Oh that’s much too far ahead”, so he phoned or faxed I think through to get me an earlier appointment. There were no earlier appointments. So I said, “Well, you know, I’ll live with it,” feeling quite ill and we were due to go on holiday to Madeira at the very beginning of March. 
 
Well I was waiting for this appointment. I’d spoken to him about going privately because we don’t have private health insurance and I’m a great believer in the NHS. I worked in it and he said, “No don’t start because you’ll have to have too many tests it’ll cost a fortune.” So I said, “Okay I’ll wait,” feeling quite ill.
 
By the1st March, I think we were due to leave on the 4th, I was in bed and all our packing materials were out and I was lying there thinking, I haven’t got the energy to pack. I don’t know how I’m going to get on the plane. And the telephone rang and it was our GP, who’s very good and very concerned and he said, “I don’t think you should go on holiday.” He said, “I just don’t think you should. There’s something wrong.” And he said, “Until we’ve got to the bottom of it.” So I said, “Well I’m glad you said because I don’t think I can go on holiday.”
 
The next day he was off duty and my husband came home and saw me, and he said, “I’m taking you to the doctor.” And we rang him immediately, another partner, and he said, “Bring her in.” And I’ve known this man a long time and he said, “I’ve never seen you look like this. Hospital.” And he got me in as an emergency. I was in hospital twelve days and eventually I was diagnosed, quite soon actually with Crohn’s. 
 
 

Rosalynde thought the preparation for the colonoscopy was worse than the procedure which she was...

Rosalynde thought the preparation for the colonoscopy was worse than the procedure which she was...

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Yes, because it certainly seems with people who get it younger, I believe the optimum age is 19 to 35, they don’t grow out of it. They’ve got it for life. And my relative who has it who is 50 this year has had it since he was 19 and has to have to colonoscopy every year because of the risk of cancer of the colon. So they don’t get rid of it. I think colonoscopy is the worst bit of it. It’s just awful.
 
In terms of the procedure, you mean?
 
Well the procedure and also the preparation for it is horrible.
 
Can you explain a bit about the preparation for it?
 

Well if you think people want to know. You are given laxatives if you have it at home, which I did, and the same thing happens in hospital. I’m glad I had it at home, because it’s convenient and you’re given enormous amount of laxatives so that you have to empty your bowel, absolutely, completely. So you go on going to the loo when you’ve got nothing expel. And by the time you’ve done that, well anybody who has had D & V, vomiting and diarrhoea will know just a bout of that is bad enough, but if you think of it four times over and you’ve got pains in your stomach anyway, you’re an absolute wreck by the time you go in because you do this the day before and then you go in the next day and have the procedure and you’re a wreck by the time you get there. Also you don’t eat, you mustn’t have anything solid for 24 hours before. And for twelve hours before I think you can only have liquid. So you’ve got nothing inside you to expel [laughs]. And everyone I’ve spoken to you since about the, they all say, “Oh it’s the preparation that’s the worst,” because they put you out for the procedure. 

 

Being Jewish is an important part of Rosalynde’s identity but she doesn’t think it has had a...

Being Jewish is an important part of Rosalynde’s identity but she doesn’t think it has had a...

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Is there anything you found out in particular that’s been helpful?
 
I don’t know that its been helpful but I was told immediately that it was an Ashkenazi disease, and Ashkenazi people were more, more prone to get it. Yes, well this young woman I mentioned she told me about eating rice rather than potatoes and that’s made a big difference of course. It was very useful. And I was, another person I know who actually teaches exercise told me that exercise would be good for it, even though I was tired and that’s made a difference too. Those sorts of things but various things on the diet, I’m sure people have come across, like cutting out wheat, like cutting out dairy food.
 
And when you were told quite early on that it was an Ashkenazi – it was related to Ashkenazi Jews how, what did you think when you heard that?
 
I don’t think I thought anything. I think well that’s interesting. No, I don’t I don’t think I did. No, it didn’t bother me that much. There’s so many things aren’t there? I believe celiac disease is an Ashkenazi disease, isn’t it and there are so many things that you can get that come with your ethnic origin or you family, so no, it really didn’t bother me.
 
Is there any way in which your Jewish background has influenced your health do you think or your health behaviour?
 
Well I suppose I was neurotic as most Jews, [laughs] I don’t know if in your research, is migraine a Jewish thing?
 
It hasn’t cropped up actually.
 
It hasn’t cropped up because I suffered in the past with migraine, very, very badly. I’ve grown out of it quite a bit. My father suffered with it, my son suffers with it. I know lots of Christian people suffer badly with migraine. So I’ve never thought of that as a Jewish thing, I just wondered. What was your question again?
 
Are there any ways in which being Jewish has influenced your health do you think? Or your health behaviour?
 

No I think it’s influenced my behaviour enormously, enormously. I once heard on the radio somebody called Klaus Moser. He was head of the opera and he was also the head of Wadham College asked what had influenced his life most and he said, “Being Jewish and the holocaust.” And I said, “I could identify with that,” because I grew up in the shadow of the knowledge of the holocaust so it has affected me enormously and over the years I always wanted to be involved in holocaust education, which I am now. And being Jewish, I have often said you can stop being English and become French or Australian or whatever, but you can’t stop being Jewish. And even people who convert I don’t think they actually stop being Jewish, they add Islam or Christianity or whatever to their Jewishness. So … But as far as health issues I don’t think it has affected me in particular. 

 

Rosalynde noticed that she was losing weight but at the time she had no other symptoms and she...

Rosalynde noticed that she was losing weight but at the time she had no other symptoms and she...

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Well around November of last year 2008 I was losing weight. I hadn’t noticed it particularly but I put on a new outfit that I’d bought a month before and it was about two sizes too big. And at that time, I have always been slim, but a woman is always glad to lose a bit of weight and I didn’t take any notice. And then by December I, I really was losing weight and by the beginning of January - and I suppose I dismissed it, thinking I don’t know, never mind, I didn’t feel ill - but by January I was in pain and not feeling well at all.

 

Less energy and difficulties eating out have affected Rosalynde’s experiences of going out.

Less energy and difficulties eating out have affected Rosalynde’s experiences of going out.

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It does affect your life a lot. It’s not just what you can’t eat or can eat, because being Jewish affects that but it’s that you are so aware of not feeling well and having pains. I’m sure this applies to people with cancer and all sorts of things. And also what I haven’t mentioned apart from the colonoscopy. One of the side effects, or one of the effects, is that it affects your bowels, so that you go through spells when you can go ten times in the day, pass motion ten times in a day and then you might get constipated. And then, so you can be caught out and that affects you too, because if you go lots of times in the day, you’re quite exhausted at the end of it [laughs]. That’s it yes. I didn’t mention that I should have done. It’s quite an important component of it.
 
So has it changed how you are leading your life at the moment would you say?
 
Inasmuch as my husband and I like walking and I can’t walk very far because I haven’t got the energy to, so that’s changed it. We don’t eat out very much. We weren’t great eaters out but like yesterday we went to a lunch time concert in London and in the past - it finishes at two - we would have gone out for lunch. And it’s not worth it because most lunch times things are with bread, or you know, or pasta or something and it’s such a palaver, I said, “Well let’s go home.” So its affected that. And we had, we had intended to go away for the weekend to one of the cities on the continent, Budapest, but I decided if you go to a city how far do you have to walk to see anything? So it has affected our, our life in that way but not so terribly, terribly, you know. I wouldn’t book a holiday where the diet was restricted inasmuch as, you know, it would be a waste of money, a waste of time, not being able to eat things and not having, not having food that you can eat. 
 
 

The dietary advice from Rosalynde’s consultant and dietician was unhelpful. She is now seeing an...

The dietary advice from Rosalynde’s consultant and dietician was unhelpful. She is now seeing an...

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When you were given the diagnosis did the doctors give you enough information at that point?
 
No, nothing like enough. First of all I asked the consultant I saw what diet I should be on. And he said, “Oh it’s just trial and error.” Now it is trial and error to an extent but - because you speak to some people suffering from Crohn’s and they can have such and such, whereas you can’t - but there are certain things that most Crohn’s sufferers know don’t agree with them. I mean we, my husband and I always have fresh orange juice at breakfast and the first time I had it, I just wanted to die. It was so painful. Now when I’ve spoken to the other sufferers they say, “Oh yes, fruit juice is out.” Well that must filter through to the doctors. And potatoes are another one, wheat to a certain extent. I mean, you know.
I was then sent to a dietician. I had forgotten about that, who was absolutely useless, absolutely useless. I think a lot of people and I’ve certainly seen it from the web, are... combine losing weight with diet, even though it’s known that Crohn’s suffers generally are thin. I don’t know if you’ve found that.
 
Have you been to support groups?
 
No, no, I haven’t been to support groups. I have been to an alternative therapist. I hope my doctor doesn’t look at this interview [laughs] who is the acknowledged person/guru on Crohn’s and colitis. Her name’s [name] and she’s Swedish and she has given me a lot of help with diet and the way I go about Crohn’s. I go to her privately as well.
 
And you found her using the internet did you?
 

No, my daughter found her. I think she may have found her, I’m not sure if she found her on the internet, but my daughter’s very into alternative therapy and not taking drugs. Maybe it’s because she’s got a mother whose work was in the pharmaceutical industry, but she, so she was, you know, “Don’t go on drugs for the rest of your life mummy.” I think I probably will be, but never mind, and she found out about this woman and has been nagging me to go. And I said, “Well there’s no point in me going until I feel, you know, controlled in some way by the medical profession, and then go,” which is what I’ve done. And I think she’s going to be good. I’ve only just started going to her so it’s no time. Her diet has been very good. 

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