Hinda - Interview 25

Age at interview: 54

Brief Outline:

Hinda was diagnosed with Crohn's disease fifteen years ago. She had a re-section and has remained on medication since.

Background:

Hinda works as a caterer, she is single and has one grown up child. Ethnic background/nationality: Jewish

More about me...

Hinda was diagnosed with Crohn’s disease after a few years of experiencing problems with her bowels and considerable weight loss. Hinda was relieved to get the diagnosis as she felt she was going mad. She had a bowel re-section and was put on a range of medication including Imuran and Solazapirine. Five years ago, Hinda was put on Questran.

 

Having read a bit about Crohn’s early on, Hinda now just tries to get on with her life. She feels having Crohn’s has constrained her life. For example, it can take two or three hours to get ready in the morning after taking her medication, and going anywhere always involves finding out where the toilets are and making sure she has her medication. Hinda used to smoke around 20 cigarettes a day but stopped smoking around seven years ago. She feels this has helped her Crohn’s. Hinda works part time as a caterer and while she is largely aware of what she can and can’t eat, this can change depending on how stressed she is. 

The restrictive nature of Crohn's contributed to Hinda's marriage breakup. Travelling is...

Has it really constrained your life then over the years would you say?

 

It has really, because to be honest with you, I mean my marriage split up, not because of that, but it didn’t help. It didn’t help because if we wanted to go away on holidays I had to take all this medication with me, and I mean I was only in my thirties at the time, and I mean I wanted to go to Israel a few times. But dragging all this medication, I mean, it’s crazy. And my husband was a golfer. He was actually a professional at one stage, and it was too restricting to be quite honest. But, I don’t know.

 

It probably did, it probably did make a difference to my life really. But more so in the, not now, but years ago. But even then I suppose now, I split up six years ago with him. Even to meet somebody else, how do you explain to somebody? Now okay I’ve have met somebody, but he knows what it’s like because his ex-wife was, well not the same, but something similar, I think she had. Anyway it doesn’t matter. But it’s kind of awkward you go out for a meal and it’s oh sorry I can’t go to an Italian restaurant. Or I can’t go to such and such a place. Or when we went to Spain on holidays last year together, and it’s hard to say to him, “Well I can’t go there to eat, because there’s nothing I can.” Even last Saturday night we were going out with friends, and they said to us, “Where do you want to go?” They chose, my friends chose this restaurant and I said to them, “Look do you mind if I look at the menu before we go.” So I went online and I looked at the menu, and I rang them back and I said, “Listen can you change and go somewhere else?” I said, it was all everything was tomato based, or, and I said, “Look, there’s nothing there I can eat.” So I mean even things like Italian, Italian is out of the question mostly and a lot of Chinese base their sauces on tomatoes now. So I just stay clear of it. So it tells it doesn’t help. People get browned off. I can’t this eat this, I can’t eat that [small laugh]. We go for a drink. Oh I don’t drink. “Why don’t you drink?” They don’t believe you half the time. They probably think it’s all, they think it’s all made up but…

 

Hinda felt bad asking for a plain sauce when her daughter-in-law had gone to the effort of...

Well something, I suppose it’s obvious, it’s always in the back of your mind, but I don’t even, I try not to think about it. I try my best not to even think about it. The only time, I would think about it, as I said, was I’m going out for a meal or something like that, and then sometimes if people say to me, “Come to me for dinner.” And I sort of panic, because I have to explain to them, “That well I can’t eat this, and I can’t eat that.” Or my son’s wife, now, it’s really, you know, because last week, I’d gone there last Monday night, and I went in and she was cooking, and I said, “What are you making?” And she, I knew, I mean she probably thinks, this one’s in catering, you know, but anyway, she was making this sauce for the chicken and I said, “Can I just have mine plain?” And she said, “Yes, no problem.” But I knew, she’d gone to all the trouble of making this sauce, and I felt bad. She said to me, “Would you give me a list of things you can and can’t eat.” I just didn’t want to go down that road. 

Hinda works part time because the mornings are spent dealing with her medication.

And I find in the mornings, is the worst. I mean people say to me, “Why don’t you go and get a full time job?” I just work a couple of hours in the week. I couldn’t get a full time job, because, even if I wanted to I couldn’t. Because in the mornings, I mean I could be here till 11, 11.30 in the morning. When I get up I take the Questran and it takes me about two hours to get myself going, because I need the loo about three or four times, and then it settles down for the day. And that’s it. And then I take Questran in the evening again. Is there anything else you want to know?

 

Okay. Anything else we haven’t talked about? So just to summarise, you’re managing to work around it, because you work part time?

 

Yes. Yes. I only work like maybe one day, one and a half days a week.

 

Because of the condition?

 

Yes. Yes. I work. I try not to work till kind of early afternoon, like maybe from 12, 1 o’clock in the day, and I would only work definitely on a Thursday if there’s work there. And the odd time I would have to work possibly on a Wednesday for a few hours, but that’s it. I don’t do any more. I get very tired. I have, I have noticed that I do get very tired. I don’t know. Maybe it’s just getting… that I’m getting older [laughs]. 

After two years of stomach pains and weight loss, Hinda finally got a diagnosis of Crohn's disease.

I started going to the GP first of all with it, and he was giving me things like Colofac, nothing very much to be honest with you. Then, he said to me, eventually, after about a year or so, he sent me to [Hospital] to see a specialist there.

 

I went to see [Professor ] and by that stage I was down to about, I think about six stone. I was never heavy, not as heavy as I am now, but I was always maybe nine stonish. But I’d gone down a lot, and eventually I’d gone down to about four and a half stone. And I kept going in to him I just wasn’t well. I was feeling sick. He was doing tests, but nothing major. He eventually, after about two years ago, after going privately, her eventually said to me, about, he thought I had anorexia and I should go and see a shrink. And I said, “No.” I said, “I do not have anorexia.” I knew I did not. I’m not that stupid. I said, “No, I do not have anorexia.” I didn’t know what it was, but the pains were violent, really bad in my stomach.

 

And eventually, anyway, after about two and a half years, I had a friend who was a radiographer in the hospital, he was the head radiographer in the hospital, in [hospital]. And my husband contacted him, because I was just getting sick all the time. I would sit up against the radiator to try and kill the pain. I would sit up against the radiator trying to get the heat through me. I thought maybe that would do something for it. But after, it was after, it was after two and a half years roughly, after I’d been going to [Professor] that I went to see this fellow in... and I’d had loads of tests done... and I went to see this fellow, [doctor] was his name. He was the head radiographer. And he said…

 

You had going to see the radiographer.

 

Yes. So I went to see [doctor] and he said to me, when I explained the whole thing to him, and he said, “I’ll try one test and see.” And I don’t know what it’s called, but they put a tube down. It was horrible. It was the most horrific I’ve ever had done, and I never want to have it done again. They put a tube down your nose and down your throat and it goes down into your bowel. And they put you then, I can’t remember do they pour, as far as I can remember they poured something down through the tube. I think it colours the inside of it or something. And then they did sort of x-rays to see what was wrong. And within, I would say ten minutes of having those tests done, he came out and told me that I had Crohn’s.  

Hinda was relieved to finally find out that the stomach pains she had experienced for two years...

Can you remember how you felt? You said that you felt relieved when you got the diagnosis.

 

Well at least, I knew, well at least then there was something, I knew there was something wrong; that I wasn’t going mad. I mean I actually thought when the doctor said to me to see a psychiatrist, I thought, I knew I wasn’t mad, but I mean, I thought maybe, I knew there was something wrong. Yes, I was delighted, not delighted, but I mean I was happy that I knew there was something. That I wasn’t just imagining things because you do, I mean after two, over two years, of saying you’d got pains in your stomach and cramps in your stomach, and nobody believes you. I mean, my son at the time was only what 15? 14? 15, and he had just had his bar mitzvah and I thought, oh that’s what brought it on; the stress of that. Because I’m in the catering business I did the whole weekend. I mean I had hundreds of people for dinners and God knows what, a whole family thing, Friday night, Saturday night, Sunday night, Monday night. The whole weekend. I got this about a year, year and a half later, and I thought it was just the stress of all that. But I don’t know. Maybe it wasn’t, maybe it wasn’t. Who knows? I don’t know. 

Hinda had pain in her knees and fingers when taking Pentasa to treat her Crohn's disease. After...

Did they tell you what the side effects were?

 

Yes. They did tell you. But they did… Now this is going back when I first was diagnosed and put on them, and I’ve been on them ever since. They told me that they can cause cancer. But, I just keep taking them. I don’t know – I know that sounds terrible, but what can I do? I mean, I’ve no choice but to take them. I asked them at one stage to - I’m on three a day, and I asked them to lower it down at one stage, and they did, they lowered it to two. But, I, it wasn’t working, so I had to go onto the three.

 

So do you check things like that when you see the doctor?

 

Yes. Yes. I mean he changed me. I don’t know, oh yes, I know what it was, that was something else actually, he changed me from the, I was on Pentasa, he changed me because I was complaining, which it’s not as bad now, I must say, but he changed me from the Pentasa, to see Salazopyrin, because I was getting terrible pains in my fingers, and in my knees.

 

And it went when you changed?

 

It’s not, no, I still get it, but not as bad. My knees, my knees in particular, but they’re not as bad as it was. It was very bad. Last year, I mean, I got to the stage where I couldn’t walk up down stairs. It was really bad. And that’s when he said to me, “Look, I’ll take you off these and see how it goes.” Okay. Sometimes, you know, when I’ve having a bad bout, I would know straight away, that I can feel knees starting. But then I kind of hope maybe it’s from my legs, but... [laughs]. 

Hinda's dietician told her it was okay to drink fruit juice, but she reacted very badly. She has...

But when I do eat, I have to watch what I eat. I really don’t drink anymore at all. I used to love a drink. But most times that would set me off. Food, the funny thing is I can eat Indian food. Spicy doesn’t seem to bother me, but yet, if there was a, half a tomato in it, I would know straight away because there’s something in tomatoes and citrus fruit that really affects me badly.

 

Sorry, but no they didn’t give you any information. And even in the hospital they sent a dietician in to see me. She didn’t even really know very much because she was saying to me, you have to drink more. And I was saying, “Well drink what?” I couldn’t drink Seven Up, fizzy drinks. I couldn’t drink fruit juice. And she said, “Oh you can drink fruit juice. You can drink pineapple juice or prune juice.” Now I knew for a fact that I could not drink prune juice. And I had a feeling I couldn’t drink pineapple juice.

 

And the first night I said, well I said to my husband will you bring me in a carton of either or whatever. And he brought me in, I don’t know which one he brought me in, and I had like a tiny little glass of it. And the nurse came in to me about 11 o’clock at night, and I was in the loo. And she came back to me about 4 o’clock in the morning and I was still in the toilet. And she came in a good few times to see if I was alright. And, there I was. To be honest I was in a dreadful state. And I threw the pineapple juice down pan. That was the end of that. I don’t drink fruit juice or anything like that anymore.