Sylvia - Interview 7

Age at interview: 74

Brief Outline: Sylvia was diagnosed with Crohn's Disease aged 29. She has since had two hemicolectomies and is currently on anti-inflammatory medication. Sylvia's experiences of going out are affected and she feels it is important people don't ignore signs of Crohn's Disease.

Background: Sylvia is a retired social worker. She is a widow and has had two children. Ethnic background/nationality: White British

More about me...

Sylvia, a retired social worker, was diagnosed with Crohn’s Disease when she was 29 after experiencing acute pain for several months. She became seriously ill and had a hemicolectomy which seemed to resolve the problem. Apart from B12 injections, Sylvia describes getting on with her life for the next thirty years or so. When she has the odd flare up, she manages it with a bland diet and plenty of rest.

 

Two years ago, Sylvia’s son committed suicide and a couple of months later she became acutely ill and had a second hemicolectomy. She is still experiencing some symptoms and is very concerned that she will end up with a colostomy. Sylvia has recently started taking anti inflammatory medication to alleviate the symptoms but is keen to avoid taking steroids.

 

Having Crohn’s Disease has had an impact on Sylvia’s experiences of going out and going on holiday. She is always aware of where the nearest toilets are and describes feeling embarrassed because Crohn’s affects bowel function. She thinks it is important that people don’t ignore signs of Crohn’s Disease and see the doctor straightaway.

 

Sylvia had an Orthodox background and though she is less observant over the years, she keeps the dietary laws and her Jewish identity is very important to her. Sylvia does not think that her health issues are related to her Jewish background. 

Sylvia finds that explaining the effects of Crohn's disease to friends and family can be embarrassing because talking about bowel function remains a cultural taboo.

Do you tell people that you’re with, if you’re travelling with people or if you meeting friends out in a restaurant are they aware of this?

 

Normally when I go away it’s with close friends and yes, I mean, I know just after my husband, my husband died -he died, what nineteen years ago -I went with a friend to Florence and she was a good friend, she knew I had Crohn’s but we’d never been away together before, and you know, every so often I had to rush back to the hotel to go, you know, sometimes four or five times, and you know, in the end, you know, I told her. I think partly because, you know, it’s to do with bowel function and one feels sort of slightly that you don’t talk about it and things like that, rather than saying well, you know, it’s an illness, the same, the same as anything else. But I think that’s what to do, I think that’s what it’s about. 

 

And I know, well a few years ago I was with my son and daughter and we were in Istanbul and we were in the Topkapi Palace and, you know, you do the tour there and I said to the guide, “Is there a toilet in here?” There was no toilet in this actual place so I would have... so I ended up having to go out and missing the whole tour to sort of, to where there was a toilet. And trying to explain to children, right well, you know, I need to go to the toilet. ‘Well can’t it wait’ and things like that. So, so yes, I think there is, you know, can be a certain amount of stigma, you know, and wondering what people will think about you and things like that and that you can’t control yourself. 

 

And very occasionally, at night, I’m not always able to control my bowels, so sometimes there’ll be a bit of staining, which is, not good, you know, and, and I’m always worried, you know, particularly if I’m away. Fine, I can sort of change the bed here. So, so you know those worries that go on. Yes.

 

I mean a lot of the times when you say to people, “Well I have Crohn's Disease. A lot of people aren’t aware what it is. They have absolutely no idea and you get the stupid joke of Crohn's Disease and, you know, ‘what do you expect at your age? An old crone’ and things like that. [laughter in voice].

 

Seeing different consultants all the time makes it difficult to build rapport. Sylvia wrote to the Chief Executive about her appointment being put back by six weeks.

Do you think if you had been more questioning of the doctors at that point, there was something they could have done that early on that would have made your life easier in terms of the Crohn’s?

 

Yes, I do because it would have given me a greater understanding. And I mean, maybe a lot of it, is to do with the fact how doctors sort of dealt with their patients, you know, years and years ago, doctors were gosh, you just sort of listened to exactly everything that they told you. And, you know, probably I certainly didn’t challenge, whereas these days I do. Yes.

 

You’ve got support now with your gastroenterologist and the follow up appointments  you’re having now. Have you found support anywhere else? Any other form of support?

 

No. I haven’t looked for it. I’m not a hundred per cent happy about the support from the gastroenterologists simply because I keep seeing different ones, and last week I wrote to the original consultant with a copy to the hospital Chief Executive, saying I wasn’t happy about this and could I go back onto the original consultant’s list. And also they kept on changing appointments and whatever, and I’m still waiting for response. I think okay I know doctors are busy, doctors move on, there’s sometimes shortages and everything’s written in your notes, but, you know, for me, you like to build up some sort of rapport with the doctor and feel that, you know, they don’t know you as such, but that, you know, they’re aware of you, and also, you know, doing that, you then have confidence in the doctor.

 

What I have found particularly annoying, they change the appointments, sometimes two three days before you’re due to go for an appointment, they then make you, offer you, make you another appointment for five six weeks later and the chances are, they could well change that. And it’s... and this is why I did a copy of the letter to the Chief Executive, because who decides, you know if you change the appointment, who decides which patient can wait for five or six weeks or whatever? So I’m waiting for a response from that because, you know, to me this really isn’t acceptable. And fine, I will challenge it, but there are lots of people who won’t.

 

Sylvia has found the web a useful resource for finding information on new research and treatments. But some doctors might not like patients reading up on things by themselves.

I didn’t know anything about Crohn’s Disease and, and I asked people, but, you know, again there wasn’t really any information for the…so anyhow at that time, I just went along with it. I had two young, you know, was married. I had two young children. And I asked how, how, you know, how do you treat it? “Oh well let’s, you know, treat it with a low fibre diet and then you will be okay.”.

 

Have you found much information out yourself over the years?

 

Yes. An awful lot on the internet which is good, but I found sometimes you can absolutely frighten yourself. This is so much information. And that’s been useful I must admit. 

 

Sylvia stresses the importance of seeing doctors if you have symptoms.

Yes, that Crohn’s is… can be extremely inconvenient. It can be painful, but don’t ignore it. It is important that you see your doctors, have the tests, and be aware. And also think of yourself. If you’re feeling rough with it, then, you know, I know it’s hard to say, but at least try and rest up. Give yourself a bit of space because if you don’t, no one else is going to. So accept that you have this, and take care of yourself as much as possible, because you’re the important one.

 

Sylvia said the colonoscopy was better than the barium enema and it was not as bad as she had expected.

But, you know, maybe I’d let it get to the state by not sort of insisting on... the state I’ve sort of got to again, by not insisting on follow up. And, and also I suppose at the back of my mind, I thought, do I really want to have these tests they’re going to do. Years ago I think it would be a sigmoidoscopy and having had a barium enema and I thought no I can’t do all this again. So, yes, at times I have adopted a very head in the sand approach. I had the colonoscopy, it was in November and I’d seen the gastroenterologist before that and about two months before that. And he said, “We just want to check how things are going, because I was very surprised that they hadn’t referred me for one, you know, within three months after my discharge from hospital following the operation, the second operation. And he said, “Well we like to see, leave things to settle,” which made sense. So I said, you know, “Do I really have to have it?” And he said, “Well no, you don’t have to have it, but he said, “I think it would be very sensible.” And so, you know, I went along with it, and I must admit it wasn’t as awful as I thought it was going to be.

 

But it was very useful having it done, because it showed up where they’d joined the bits and pieces of gut together, that there was some inflammation which was Crohn’s, so, and the fact now, that I am getting some discomfort, you know, I’m pleased that I went along, had it done, and now it’s being treated. So, whether things would have been any different had I gone along, you know, on other occasions when I’d been having discomfort and pain...but you know, as I said most of the time I felt I could control it by diet and by rest. Yes. So …

 

Can you explain what a barium enema is? For people who might not know what it is...

Yes. A barium enema is a solution which they, put it crudely, they pump up your backside and it’s not the pleasantest of things, I must say, you feel as though you are going to burst and you feel it’s going to come out of your mouth, but, you know, it’s, they were able then to sort of look at what was going on. I mean these days they do the colonoscopies and … which in a way if you want you are very much out of it. You are sedated. It’s not very pleasant the day or two before because they give you very powerful laxatives to sort of clean out the bowel. But the actual colonoscopy because you’ve had some sort of sedation you feel very relaxed. 

 

And I remember the gastroenterologist who was doing it, he said to me, “You can watch it on the screen.” And I said, “No I don’t want to see it.” So he said, “Oh up to you.” But, yes, when it was actually happening I watched it on the screen and he was able to point out, you know, I was able to ask him, “Well what’s this, what’s that?” And I felt that, okay sure I was participating, but I actually felt I was also in control of the situation, that I was being treated as a person as well as a patient so it wasn’t the terrible experience I thought it was going to be. And then after the colonoscopy they put you in a recovery room where, because you’ve been sedated, you sort of drift off for an hour or so and then they bring you a cup of tea and, yes, I mean, it’s, it’s, for me it was much better than a barium enema, it really was.

 

Sylvia has found her sense of belonging to her synagogue a comfort to her.

No apart from I like the way of life. Although many of my friends these days aren’t Jewish but it’s, you know, that’s how it is. I mean when I was a child you never had non Jewish people in the house or anything like that. But no, I like the way of life. I like the sense of belonging, even though I’m not a particularly active participant it gives you, for me it gives me a feeling of security. And, you know, I’ve got Jewish friends, non Jewish friends and most of the time we all mix in together and so, yes, I’ve got the best of both really, and, having the whole Jewish thing there, which as I say gives me a feeling of security.

 

When you say you like the way of life. Can you explain what you mean by that?

 

I think it’s the fact that I could go to the Synagogue if I wanted. And I know I will be accepted there, so that, that sort of thing. And again, almost of you know, the sense of community if you wish to participate. I don’t participate that much, but I know it’s there for me, and again, you know, almost a safety blanket that you can sort of, you know, run to if you need it. So yes, it’s important to me. My Jewish identity is important to me. 

Sylvia carried an emergency toilet card from the National Association for Colitis and Crohn's for a while but felt too embarrassed to use it.

Have you found any way of managing that process and the anxiety around toilets?

 

Not really. You know, unless you’re on familiar ground. I mean if I go away as I said, one of the first things that I will do is find out where there is the toilet. One of the things I used to... what is it? There’s the Crohn’s, National Crohn’s and Colitis thing and at one time, I belonged to that for a while, then decided not to continue. And one thing they did do, they would issue with a card, you with a card, saying you know, please let this person use the toilet, because you know, they have an illness and that sort of thing.

 

I never used it. I think partly the fact, I probably would feel, yes, would have felt too embarrassed to use it. But maybe, you know, if I was that desperate... I remember last summer I was in Lithuania and was staying in, in the hotel, fine, and usually it’s okay if you are in, you know, a restaurant or a café. Anyhow nothing seemed to be open, and you know, I’d gone for a walk for a while and I had the urge I needed to go to the toilet very, very quick. I sort of looked round. I thought do I knock on someone’s door and I can’t do that. Then there was some workmen and you know these portaloos? And I thought shall I ask them. Am I that desperate? Anyhow I thought, no, no I can’t do that. And I just about managed to get back to the hotel in time. But you know, it was, you do feel pretty desperate. And… so …

 

Sylvia was surprised that the stress at work didn't affect her.

Has it had much of an impact on your working life?

 

Only on two occasions, but apart from that no. No I mean, which is quite interesting because, you know, doing social work, mental health work, you can be in incredible, incredibly stressful situations, but probably because I wasn’t emotionally involved I was able to, I was able to deal with it. I mean, you know, some nights you had to be on call, which I must admit, I thoroughly enjoyed because the adrenaline gets going and you’re all out there. But you’re not emotionally involved. You’re able to stand back so no; I mean it didn’t have any major impact on my working life.

 

Sylvia tries to manage flare-ups of the inflammation by going on a very bland diet and avoiding alcohol.

Can you say a bit more about what you do when you’re having a flare up in terms of your diet?

 

Yes. It would just be a very bland diet. One of the things is, they say that you shouldn’t have a lot of dairy products, but sometimes at times like that I will have milk. Just, not a lot, just a little, bread, milk, rice, things like that. Pasta without any sauce, tea, I … weak tea I find is quite soothing. So something like that, something very, very bland.

 

And how long would you carry on having that diet for?

 

For as long as I’ve got the discomfort, and normally it lasts for three, four days and then I sort of go back onto a normal diet, but you know, sort of sensibly. I don’t suddenly sort of start eating a lot of high fibre food and things like that. And I would also have white fish, but you know, steamed or something like that, or baked. So yes, stuff which is very, very bland.

 

Do you feel because you’ve had this experience with the Crohn’s and because you’ve had the colonoscopy and you could see the path through your intestine, do you feel that you’re much more sensitive to your body then you would have been otherwise?

 

Sorry much more…?

 

Sensitive to your body and you’re, you are very sensitive to how your body is reacting to how you treat it sort of thing.

 

Yes, oh yes, because you, you feel maybe you shouldn’t abuse it. Mind you once you’re feeling well, you’re sort of back to your normal diet. I like a glass of wine, maybe a couple of glasses but when I have the symptoms I don’t touch any alcohol at all. But I must admit I haven’t, you know, when I’ve felt well, I haven’t felt diet has irritated it at all. It’s just if I’m feeling off then it does.

 

Have you ever thought maybe I should change my diet continually or not?

 

No. Simply because I like tasty flavoursome food and to my mind the, you know, pasta, rice and that and even plain fish is okay, but not exciting, so… No so I’ve never thought and obviously if, if the doctors had told me that I would have to, I would, like initially when it was first diagnosed before the operation when they said go on a low fibre diet. I really stuck to that religiously and in the end it didn’t make any difference. But you know, clearly it had worked for a while, but no, I mean providing I feel well on my normal diet you know, if I’ve found I was getting more and more flare ups I wouldn’t do, and you know, this time the doctor hasn’t suggested seeing a dietician or anything so …. 

Sylvia was told of a link between Crohn's and eating a traditional Jewish diet high in fats. She still follows the dietary laws of eating kosher, but tries to cut down on fatty foods.

I forget the professor’s name, but it was one year when they were doing a lot of, you know, we’re, we’re talking about the late 1960s now when they were doing a lot of research on Crohn’s, because I remember they had some medical students, and, I was, you know, sometimes they would show... ask them to come and diagnose a patient, and I was the patient, you know, because I had Crohn’s. And, he said to me, “It can be quite common with Ashkenazi Jews who do the diet, the chicken soup, the fats” and things like that. But I must admit I don’t know his, I don’t remember his name or anything.

 

And so were you brought up with quite an observant background?

 

Oh yes.

 

My parents were, they weren’t ultra Orthodox, but very Orthodox, and, we were brought up having a strictly kosher diet, celebrated all the festivals which, you know, food is often, well food is connected with all of them. So yes, it was a very traditional Jewish upbringing. My paternal grandparents, they were ultra Orthodox and so, it wasn’t until quite late on in my marriage, that I actually sort of even tasted non kosher food because we would never eat out of restaurants or anything like that. And even now, I have kosher food, you know, I buy kosher meat. I’m not Orthodox but I buy kosher meat. I keep my meat and milk separately. I don’t eat milk after meat. So, I follow all the dietary laws, except maybe my cooking is a bit healthier than my parents. I don’t use, yes, loads of fat and you know, if I make chicken soup, most of the fat’s gone and things like that. But I do keep, you know, kosher. 

Sylvia explains how a flare up of Crohn's affects her.

Does the Crohn’s flare up in different parts of your intestine or is it always in the same place?

 

No it’s always in the same place, sort of on my left hand side at the top, you know, sort of under my waist, and then it sort of spreads across the stomach. And, you have these griping pains. I mean the times when they’ve really been bad, they’ve felt like contractions, you know, really sort of gripping. 

 

And, this time also my bowel was twisted, so, and if I have the pain I’m aware of it when I’m walking. My inner, certainly with my left leg, I, I am aware of it. And when it’s been really, really bad, if I sort of bend over like this, it’s as though you’re sort of crushing something. Because of, you know, this is all the inflammation, plus a lot of the time, you want to go to the toilet, you have diarrhoea you know, maybe three, four, five, six times and sometimes that’s spread over a day. When I’m well I would probably want to open my bowels three or four times, usually in the mornings, then at night. So what I find, if I’m going out, I need to know where there’s a toilet because when you want to go, you want to go. It’s quite hard to control. So... and certainly when I go on holiday, you know, one of the first things you do is check out, well where are loos? And there’s always this worry, if you’re going on say a coach trip as it were, are they going to have a toilet? I mean most of the time you don’t need it, but you need to know it’s there.