Riva - Interview 18

Age at interview: 34

Age at diagnosis: 16

Brief Outline: Riva was diagnosed with Crohn's disease aged 16 and since has experienced a constant low level of the condition with occasional more severe flare ups and several surgeries. About seven years ago she was also diagnosed with fibromyalgia.

Background: Riva is married with two children.

More about me...

Riva was diagnosed with Crohn’s disease when she was sixteen, after a year of experiencing stomach pains. After a couple of resections of the bowel early on, she has since managed with a combination of watching her diet, changing to a liquid diet when necessary and medication. Her Crohn’s is constantly active but at a low level with occasional serious flare ups. Riva describes how getting Crohn’s turned her life “completely upside down”. It affected her education and future plans and has placed constraints on her everyday life. She is very aware of what she eats and how this affects her health and has tried a range of medication over the years.

 

Riva has a very good relationship with her consultant who she sees regularly, depending on the severity of the Crohn’s. She feels supported by her family, friends and healthcare professionals. About seven years ago she was also diagnosed with fibromyalgia and manages the pain with trigger point injections and painkillers.

 

Riva has found that Crohn’s disease is a very individual condition which affects people differently. She thinks that it should be recognised as a disability because the impact on the lives of people with Crohn’s is substantial and largely unacknowledged.

Being told that her problems with Crohn's and fibromyalgia were 'in her head' was infuriating for...

How does that feel if you are experiencing real pain, and you’re being told that it’s in your head?

 

It’s infuriating actually because I know it’s real, and I know that I’m not the only one who says it’s real. I mean doctors examined me and say it’s classic fibromyalgia and it does exist. It is painful. And I’ve met people with fibromyalgia and it’s, it’s very painful at times. And I know people that stayed in bed, you know, for months with fibromyalgia and just couldn’t move from the pain. So if somebody come and said to me and said, “Oh fibromyalgia doesn’t exist, it’s in your head.” And I’ll say, “You’re talking rubbish. You’re talking rubbish because the fact is it does, and there are a lot of people now, suffer from it.” And more and more doctors that say, “Yes, it does exist. It is a condition.” But there’s always, they’ll always be someone to tell you oh no, you’re talking rubbish and it’s only in your head. There’s always someone like that. Also I had with the Crohn’s, someone who once told me that it was, Crohn’s was in my head. And that’s now physically proven, you know, they took the bowels and like “Look it’s ill. It’s sick. It’s there.” But, there was a doctor that told that it was only in my head, and it’s actually not real.

 

Riva's consultant has been supportive, helpful and willing to try things.

The best thing so far was conventional medicine. My consultant at the hospital has been fantastic. He’s been so helpful, you know, and willing to try things, you know supportive, being there when I need, when I need him, when I need to talk to someone about what’s going on. And he never gives up, he says, “Oh well this can work. Let’s try this, let’s try anything.” He always has something new up his sleeve, you know, which is really lucky [laugh]. 

 

And I’m waiting for the day that, you know, that row of medicines will stop, because some work for a short while and then they stop working and, but, I have been very lucky I believe with him. I was very lucky because I know that a lot of people don’t really communicate like that with their consultant. You know, they barely see them. They go and they see a registrar, a different one every time, and they have to start the story all over again. I was very lucky being able to see the same person for years now. It helps.

 

Riva; it is trial and error; you have to learn what you can and can't eat. It's only the patient...

I would just say learn your own body and what you can and can’t eat don’t let anybody tell you what you can and can’t eat because it doesn’t work like that. It doesn’t work like that, you have to, you know best. You have to try and, and see. If you can’t eat that particular type of food, you’ll know very, very quickly that you can’t, this doesn’t agree with you, and it’s probably not going to change. It’s not like allergies that can come and go. 

 

Because also I went to try some homeopathic treatments and naturopathy, you know, and they told me, oh you have to eat this, that and the other. I said “I can’t eat that. This is grain, this is going to destroy my bowels. “Oh no, it’s fantastic. It’s healthy. You have to eat it”. The fact is that I can’t, and it doesn’t matter how someone believes that I can. You have to see and learn for yourself. It’s the only way.

 

Riva feels health professionals should try to be open minded and listen carefully.

Is there anything you’d say to health professionals?

 

To be a little bit more open-minded, you know, and listen. Listen to your patients, because as I said I’m really lucky with my consultant because he does listen. But I’ve been under doctors that are not interested in what the patient has got to say. They are just not, they look at you like a sample of something and if you’ve got a, b, and c then it must be x and no, there’s no place for any input from the, from the patient, and the patient, you know, even if they’re not the most clever person in the world, they still know their own body and they can feel what’s happening with them. And I know that if people will listen more, things will be easier for both sides. 

 

Also, because there are different consultants for different issues, and it’s only the patient that can see the whole picture. You know, if there’s any ENT consultant that looks at one thing, and the pain consultant looks at something else, and then internal medicine looks at one thing, and sometimes if you bring everything together and look at it as a whole, it’s one person after all. It’s not divided into bits. And things are a lot easier to cope with and I suppose to diagnose as well.

 

Riva compares the UK to Israel where Crohn's is recognised as a disability.

I tell you what, something that also, you know, they try and work here, the NACC, about recognising Crohn’s as a disability. Where I come from, Israel, when I was diagnosed with Crohn’s, there’s so much recognition of it there that immediately I was given 75% Disability Allowance, which is very high, because they know, you know, what it is to live with it and cope with it, and you know, try and work and keep a job and study and all that. It’s really hard, especially when you have flare-ups and you have to be in bed, you know, for days and days, and weeks sometimes. Here, there’s no recognition of Crohn’s you know, as, you know, as being a disability. And it makes a lot of people’s lives, very difficult. I mean I tried to get Disability Living Allowance, also with my back I am thinking, well my back just started, didn’t really know what it was yet, but I also had the Crohn’s, and things were really, really difficult. And I had a doctor came to my house and said, “Can you cut a carrot?” I said, “Yes, I can cut a carrot.” You know, “there’s days that I’m in bed and I can’t, but most days, yes, I’ll be able to cut a carrot.” “Then you don’t deserve anything.” I don’t think that’s a criteria to disability, whether or not you can cut a carrot. It was in these words. I mean I’m not changing anything he said. And I know there are lots of people whose Crohn’s are a lot worse than mine and they can’t keep a steady job, and they can’t go to university and study. And they need the support more than, you know, more than others. Even more than people in wheelchairs that can get out and about, and, and can keep jobs better than somebody that, you know, gets into bed for months at a time. And it’s not recognised here. And I don’t understand why.

 

The NACC are trying to change that?

 

Yes, I believe so. They try, they help, they try and help people, you know, fill the forms in a way, but I find these forms very upsetting, you know, at the best of times. After I didn’t manage to do it that first time, I sort of gave up. I said, “I’m not going through that again.” It was really, really hard.

Is it the length of the form?

 

Is not the length. It’s the questions they ask you, you know, and the repetition of the most, you know, degrading details. I don’t want to do it again.

 

Riva is a member of the National Association for Crohn's and Colitis (NACC). Their 'can't wait'...

In terms of information do you read a lot about Crohn’s or have you read a lot over the past twenty years?

 

I did. I did read a lot. I am a member of the NACC. It’s actually been a really helpful thing to be. First of all they give you this fantastic card. It’s called a ‘Can’t Wait’ card with a lot of shops and businesses recognise and they let you use the toilet ever if there isn’t customer toilet. And I know it seems like a small thing, but it’s a life saver. I would recommend that to anybody with Crohn’s disease. Join the NACC just for that card.

 

They also have a lot of information on their website and they have meetings with doctors and lectures and update you on new things, send you their newsletter every few months. It’s good stuff. It helps. So I did learnt quite a lot about it. And about other conditions that connect with it. Or don’t, you know, because when my back problems started I was looking to see has it been affected by the Crohn’s. Is it something new? But indeed it really helps with these things which I didn’t have when I was 15. So it’s easier now I think. 

Riva asked why me? when she was diagnosed with Crohn's disease as a teenager and said it...

And can you remember what you felt when you were told it was Crohn’s?

 

Well I was a pretty self centred teenager and I was thinking like ‘why me?’ and ‘why now?’ ‘What did I do to deserve this?’ It was very lousy having to go through that. I missed almost two years of school, barely scraped my matriculation exams. It changed my life, completely. It... I don’t know how to say it, it just turned it completely upside, everything, you know, all my dreams and things that I wanted to do. Just so many things had to be put on hold or completely cancelled. 

After almost 20 years of living with Crohn's Riva knows what she can and can't eat. She still...

 

I try to keep to a certain diet, that I know I can do, you know, with so many years of experience with it. Like almost twenty years of experience that I have with the Crohn’s, I know more or less what I can and can’t eat. Out of just trial and error, because no two people have the same, the same disease with Crohn’s. It’s very individual and I know people that can eat stuff that I would never dream of. You know, I’m just looking at it and I feel bad so I know what I can eat and what I can’t. At the moment I don’t eat anything. I’m on a liquid diet called Modulen that’s actually been proving very helpful for me at times just to calm the bowel down. And waiting for the tests.

 

And in terms of going out and eating out. Is it that you, I mean do you have trouble eating out. Do you know that there’s certain things you can’t eat?

 

I know there’s certain things I can’t eat. I just avoid them. Just go and eat what I can. I love eating. I love eating out. I’m a great fan of food and of cooking. I even tried a catering course once. But I just try and adjust the food to my condition. If I cook at home and it’s something that I love, and I can’t really eat it the way they have it in the restaurant, I’ll adjust it to the way I can eat it.

 

Can you give me an example of that?

 

Let’s say curry. There’s a lot of curries with lots of vegetable in, and vegetables with lots of fibre that I cannot eat. So I modify it, I put chicken instead of veg or tofu or something that I can eat. Create my own thing. So, no I don’t like compromising about food, but I have to, so I just try and make it as tasty as possible.