What happened was that his bar mitzvah was actually at Passover. So he was diagnosed at the New Year which is September time. And he was really working out, okay he’ll be on this medication, he’ll be off it, he’ll be into food and by the time his bar mitzvah comes he’ll be able to eat. And then he had the relapse in February and that completely threw him. He said, I’m not going on it again. I’m not doing it. What’s the point And he was really, really angry. I mean you can imagine. It was absolutely terrible for him. Absolutely terrible.

And you don’t think that helped particularly, that second time?

It didn’t. It didn’t. I mean it sort of kept going, but I know he wasn’t well. So he was sitting there. I don’t know if you’ve any picture of a bar mitzvah.

No. Oh there’s a bar mitzvah in the Synagogue.

So okay that’s in the Synagogue, but you also have a sit down meal with a lot of people. He was sitting there [laugh] at the top table and he was eating a potato and I know this sounds really pathetic, but food becomes quite crucial, especially to a boy of thirteen and he’s sitting there, and everyone’s having a nice time and having this festive meal, and he’s sitting there eating a potato. That’s all he had, well actually he wasn’t supposed to have that, but I had to give him something to eat [laughs]. What do I do?

We carried on like this, until October then we were going away to Israel. And I had been back to the consultant for a regular check up and again saying. I don’t think he’s right I told him we were going away so he said, Well if you’re going away then you’d better take some antibiotics in case you get ill there, and some other drugs. And I want you to start steroids Just out of the blue. We had been told we don’t need to. But he said, No you’re going away and you’re worried. So take the steroids The steroids were actually prescribed over the phone.

But I know with steroids you don’t go on and off easily. But we took the steroids. When we came back I was hoping he’d come off them. But he said, No you have to keep on them for eight weeks And the steroid treatment was absolutely terrible for him. He went completely manic. I would describe it as he felt he was like a machine that had to keep going. He was revving up all time and you just thought well sometime soon he is just going to collapse. That’s what the steroids did to him. So I wasn’t very happy with him on steroids. The blood tests seem to improve, but as we took him off steroids, the Crohn’s came back again. So that wasn’t very successful.

By this stage, because I wasn’t happy with the consultant, I moved consultants. And this new consultant, having seen everything we’d done, he gave us various options but his preferred option in the end was surgery – to cut out the offending bit – which was something I was very frightened about. I kind of felt it was an end, that it was very final. Obviously once you cut out something it can’t go back I could just envisage snipping, every couple of years we’d snip a bit more and then what? That’s how I viewed it. I suppose in a way I still view it. He did go through the surgery and he has been thriving since then. That’s a year now.

They sent us to the dietician who helped us to re-introduce the food. The understanding that I got was yes, some foods trigger Crohn’s and by doing it this way we find out those. But when he had the relapthe relapse the second time they kind of said, Oh don’t worry about the food so much. You can introduce them every day or something like that. don’t worry. There’s been new research So things change. And I thought if there were new research my poor child suffered so much four months ago, you know.

But nothing, nothing actually triggered him, triggered it. Oh well I don’t know. We had this difference of opinion, shall we say, [laughs] with the consultant. As I said he didn’t have diarrhoea, which was helpful, but also unhelpful, because I think with other Crohn’s patients that I’ve spoken to, they know that if they eat say onions or something like that, they will be in the loo within half an hour. He never had that sort of thing. He never had a direct obvious result from any of the foods.

Have you looked at joining or becoming involved in a support group outside of your community where it’s discussed?

I did. I think probably it was because I found the information that they were giving out very depressing, and I just didn’t bother to actually do it.

Was that over the internet?

Yes, the Crohn’s Society and something else. There are two societies.

So you contacted them, but you didn’t?

I looked at their website but I didn’t. I think I did get some leaflets from them. I think there’s a time and place I really couldn’t focus on. it’s funny you need information, but you don’t need too much. They talk about a very high risk of bowel cancer and the future, and I don’t need to know that. I mean you do, but [laugh] but you know, I couldn’t cope with it somehow. Mentally and emotionally I couldn’t keep up with it.

In terms of support you were saying that you’d quite like eventually to set up a support group for your local community. Is it important for you that it would have to be within your local community or could you

Yes.

It would be?

Yes. Because there are issues that relate within the community and there is the Crohn’s Society for anybody else. But I think within the community it might serve a purpose.

Then these friends who have children with Crohn’s, you know, when we meet each other, we say, How are things you know, you feel the connection. I think people do want to give support. There’s a man, must be in his sixties in our Synagogue, who one way or another found out that he had Crohn’s and I don’t know how, as I said people pick up information, because he has Crohn’s and he called us up and he said, I’d really like you to come round and I’d like to talk to you He just wanted to share his experience and hopefully help us.

So you went round there?

We went round there. I mean we know him. You know, I didn’t know he had Crohn’s, but then something you’ve got your antennae out and you feel, you sort of pick up these bits of information.

He wasn’t feeling well, so you do have to get the school involved. He’d missed lots of days, and they told us that once he was back onto the Modulen, this drink, you shouldn’t expect him to be at school full time. We were lucky in a way that it was over the school holidays. He was diagnosed in August. So we had this time. He was already on the medication before he was back in school. But during the festivals, so we don’t have school from September to half way through October there’s a lot of days off for the festivals. So it wasn’t full schooling so, from his point of view it was better. He didn’t miss so much. They didn’t expect him to be in school, you know, more than a couple of hours a day which again would have implications for the parent because you’d have to go and fetch him, somehow we would have and fetch him.

The school didn’t expect him to be in the school or the doctor?

No. The doctors. As it happened he seemed to respond very rapidly, so he was in school most days for most of the time. It went quite rapidly in school but it is a problem.

This woman I phoned who went dead silent on the phone her, son was off school for months. And one way or another my son was off schoolquite a lot when he was really ill or was going to doctor’s appointments or hospital appointments. No, he missed a lot of school and that again has implications, because he falls behind and he doesn’t feel well. Psychologically he doesn’t cope with everything.

We wanted him to see a psychologist and I still think it should have been done, because it’s a chronic disease. You just have to learn accept it, but he needed to talk. He was talking to us, but not enough. He needed We did eventually get to the psychologist, we weren’t very impressed, nor was my son [laugh].

When we went to the second consultant, and we were saying, We think he needs a psychologist He said, He doesn’t need a psychologist, he needs his Crohn’s in a bucket meaning he needed surgery. But he was right in a way, because once the Crohn’s was sorted out he didn’t need a psychologist, but our thinking is, that if it’s going to be a chronic disease and it comes back again, God forbid, then he does need some psychological help, but we’ll wait [laughs]. Now that he feels better.

I think, trying to go back into all those feelings, because it was a very traumatic time, but I think when you have a chronically sick child, you’ve got to focus on the child. And you can’t, as a pharmacist you would have thought that I would go into it all and investigate, but I found that I just couldn’t.

Even once it was diagnosed, I thought right I really do have to look into this. That’s the way I would work normally. The information on the internet was so depressing. That wasn’t the way the doctors talked to me and I don’t think they were just trying to make me feel comfortable. They seemed very upbeat, there was lots of research going on, and we can deal with this, we can manage it. But on the internet the information is very depressing and I just cried. I couldn’t take it. I couldn’t handle the stress of dealing with my child who was suffering so much, and on this regime, where you really had to support him. It was a nightmare time. So I just stopped the research. I couldn’t take it, and it is really only the last few months that I look into the subject. I’ve found that you just can’t cope with it; well I couldn’t cope with it.

Can you remember how you felt when you found out it was Crohn’s?

Shock. But I didn’t know much more than that. It had been such a traumatic few weeks. At least we had a diagnosis and there was a treatment and at the time, the doctor was very confident that you do the treatment, then he’d be fine. Now it does work sometimes like that, but it didn’t for him. So I have to say that, at that time, that timing when he was diagnosed, there was so many things happening here at home as well, we just, I don’t know how I survived it to be honest.

You see they say it’s genetic and it’s in the family. But all the people I’ve spoken to don’t have it in the family. it’s just the one child. So I don’t know where genetics comes into it. But I can see there are definitely a higher proportion of patients, children or adults with Crohn’s in the Jewish community than there are outside it.

When we were in the hospital for surgery, I was friendly with another mother whose child was going to have the same surgery, she said she was in a school with 400 children and this child was the only one with Crohn’s. But in our schools [laughs] there are quite a few. So it’s very strange. She didn’t know anyone else with Crohn’s. Whereas I can list them one after the other so there must be something there. I don’t know what.

So for a couple of weeks I just felt that he wasn’t looking right, but nothing other than that. So after two weeks I decided to take him to the doctor. Actually with, from my point of view, there was nothing to present. Our doctor’s a very good GP, very conscientious and he took blood tests and told me it was probably a virus, don’t worry about it, but I’ll take the blood test. Well within a couple of days he phoned me back and said, Yes, it looks like you’ve got an infection. From the blood it looks as if there’s something up. But take this antibiotic and come and see me next week

And the same thing, some more blood tests. And from that time onwards there was an eight week period when we were sent to various different people. I think my GP had an inkling that it might be Crohn’s from what he’d seen on the blood test but he wasn’t sure. And he was sent to a paediatrician, who again did more tests and we were sent to a rheumatologist and ultimately he was sent to a gastroenterologist, who confirmed that it was Crohn’s.

But in that eight week period he degenerated so much that it was just frightening. It almost like some kind of horror story because he became very weak. He couldn’t walk. I remember taking him out one day in the summer holidays to a museum and he was limping.

There were some stairs to climb, and he couldn’t, he struggled to get upstairs, that was a nightmare feeling. This child was fine a few weeks ago and look at him now; he can’t climb the stairs, he’s suffering, in pain. And then he woke up one morning and said, Mummy something’s wrong with my legs They had swollen overnight. They were swollen and hot Of course it was a Sunday, [laughter] so who do you go to, what do you do? These are all symptoms of Crohn’s. Another day, a couple of days later, he had mouth ulcers, really bad mouth ulcers. So his whole system within those few weeks went kaput. So that was, that’s how we got there. Then he was diagnosed on the Friday and they did an endoscopy and colonoscopy immediately on that day. They took us into straight into hospital. We are fortunate to have private cover, so that was very quick.

But I know with steroids you don’t go on and off easily. But we took the steroids. When we came back I was hoping he’d come off them. But he said, No you have to keep them on for eight weeks And the steroid treatment was absolutely terrible for him. He went completely manic. I would describe it as he felt he was like a machine that had to keep going. He was revving up all time and you just thought well sometime soon he is just going to collapse. That’s what the steroids did to him. So I wasn’t very happy with him on steroids. The blood tests seem to improve, but as we took him off steroids, the Crohn’s came back again. So that wasn’t very successful.

By this stage, because I wasn’t happy with the consultant, I moved consultants. And this new consultant, having seen everything we’d done, he gave us various options but his preferred option in the end was surgery – to cut out the offending bit – which was something I was very frightened about. I kind of felt it was an end, that it was very final. Obviously once you cut out something it can’t go back and I could just envisage snipping, every couple of years we’d snip a bit more and then what? That’s how I viewed it. I suppose in a way I still view it. He did go through the surgery and he has been thriving since then. That’s a year now.

I went back to the GP. We were backwards and forwards with that, but I didn’t get them to really listen. They said, Oh he looks fine. He’s okay The blood tests were not as terrible as when we were diagnosed. They were sort of hovering. They weren’t good, but they were okay. They said they were okay.

So he was having tests every two to four weeks. Every time we did them, the inflammatory markers that they look at were going up a little bit, and a little bit, and a little bit. And I kept saying to them, Look what stage are you going to tell me, there’s something wrong with my child, it’s not working No answer [laughs].

After the parenteral treatment I was struggling against the doctors and him because he wanted to have pasta and cheese and they were saying, you know, We don’t think it’s a real problem And I was saying no it is. So that was difficult for me to argue. And I kept that up all the time [laughs] until he had surgery. But after the surgery, the doctors were saying, Psychologically just leave him alone, let him eat what he wants I’m not confident that’s the right approach, but I can’t fight it.

Yes. And why do you think you weren’t listened to. You said that you felt you weren’t listened to at all?

That consultant, is a very eminent consultant and I’m sure he does wonderful research, but he just didn’t listen to me. I can’t really understand it. But I know that I was right because he was seriously ill. But he didn’t listen to me, and I just wonder, you know, what would have happened if they listened in the May, instead of in November. I don’t know, I don’t know what would have happened, whether he’d have had the surgery. I don’t know. I don’t know if it would help. It was very frustrating. Very…

Literally I’d go into the room and he’d look at my son and say, How is he And I would say, Actually I don’t think he’s feeling very well He looks all right He never examined him. From the first time that he diagnosed it, he never actually felt him or touched him or anything. So it was really, sort of a bit strange.

I tried my best to provide him with information like the blood tests beforehand and I showed him, I said, Last month this was this level. This month it’s this level He said, it’s not significant But each time it was going up, you know [laughs]. I don’t know what to say. Even my GP, I phoned the GP and I said, I don’t want to go back to him. There’s no point don’t you want to try once more And I said, There’s no point. I’m telling you I go in and I sit there and I’m out within five minutes and he says he’s fine. And I know he’s not We had to push things. But not many parents would I think

I think, trying to go back into all those feelings, because it was a very traumatic time, but I think when you have a chronically sick child, you’ve got to focus on the child. And you can’t as a pharmacist you would have thought that I would go into it all and investigate but I found that I just couldn’t.

Even once it was diagnosed, I thought right I really do have to look into this. That’s the way I would work normally. The information on the internet was so depressing. That wasn’t the way the doctors talked to me and I don’t think they were just trying to make me feel comfortable. They seemed very upbeat, that there? was lots of research going on, and we can deal with this, we can manage it. But on the internet the information is very depressing and I just cried. I couldn’t take it. I couldn’t handle the stress of dealing with my child who was suffering so much, and on this regime, where you really had to support him. It was a nightmare time. So I just stopped the research. I couldn’t take it, and it is really only the last few months that I look into the subject. I’ve found that you just can’t cope with it, well I couldn’t cope with it.

It had been such a traumatic few weeks. At least we had a diagnosis and there was a treatment. And, at the time, the doctor was very confident that you do the treatment then he’d be fine. Now it does work sometimes like that. But it didn’t for him. So I have to say that, at that time, that timing when he was diagnosed, there was so many things happening here at home as well, we just, I don’t know how I survived it to be honest.

I had one daughter, two daughters living with me, it alternated both were expecting babies at that month. We were in hospital that week and one was born that week and then since you’re talking of looking at Jewish community, so both babies were boys that means on the Friday night we make a celebration to welcome the baby boy.

On the Thursday my daughter gave birth and I was in, helping her as her labour coach and at home with the elder child. Friday night we made the celebration and we had the circumcision which is usually eight days later. Three weeks after the first baby was born my other daughter gave birth to her first baby boy, again another celebration, another circumcision. And, because it was her first baby boy there’s another celebration that we have if it’s the first baby boy, the first child in the family is a boy then it’s a different celebration a month after the birth.

So we had all those and in addition, [laughs] which I can’t really believe that all this went on now, when I talk about it. My third daughter got engaged in that week, which means another celebration for the engagement party and that sort of thing. At the same time it was our silver wedding anniversary. So all these things were happening and this poor child couldn’t eat at any of these celebrations. That was horrendous.

And it was New Year and Sukkot, I don’t know if you know about that but you have two days at New Year and then Yom Kippur, I don’t know if you know about that, the fast day, and then after that there’s a week of festival, the Feast of Tabernacles, I don’t know if you recognise that. So it was the worst timing possible for this poor child to be diagnosed and have this chronic disease and for him psychologically to accept that he has a chronic disease. That was hard.

Is there any, there’s no space – I mean this could be a really clumsy question so feel free to tell me if it is – if he was that ill that he had to have the milk only diet, is there any space within your community to sort of say, well we can’t do the celebration at the moment?

No. There wouldn’t really have been. Well circumcisions have to be done. So no, no, there wouldn’t, it wouldn’t have been sensible to do it later on. Anyway, it would not have been fair on the older children.

Yes.

So we had to talk to him, and he understood that, but it was hard.

And did that have an impact on him, I mean just not the not being able to eat, but was there any implications for his religious, for drinking the milk

We had to ask what the position was on that. I think it was accepted that it was okay. But even if it hadn’t been if that was the only treatment, medical treatment, the implications would be whether we could use our own dishes for it or separate dishes. We did use separate to dishes for preparing it, this stuff, horrible, gungy stuff [laughs].

Can you explain what you mean by if you could use your dishes or separate dishes?

In kosher kitchens you have milk dishes, and meat dishes, and they&rs

Yes. Did it impact on other family members at that time as well?

I think everyone was worried. I don’t really know. To be honest I don’t know. I don’t know the answer to that. Obviously my husband it impacted, but as I said we had to be focused. I had to do what I had to do. But I was focused on him. There is a certain amount you can think of at one time, so he was a priority and looking after the new mums and the babies were also a priority. So it was hard to split it but I didn’t think of anybody else to be honest [laugh].

I mean in terms of having a large family anyway it must be difficult to have enough attention for everybody?

Yes, exactly, but I mean you’re used to that as well, to splitting. But also the family members are used to being that they’re not the only people. So [laughs]. Family dynamics.

Can you say a bit about how did your son take the endoscopy and the colonoscopies. Was that okay?

Yes, but it was under anaesthetic and as I said he was feeling so rotten at the time he just accepted. I think we were all in a little bit of a shock. We went there, we had an appointment early on Friday morning and I sort of expected to be home, and they said,No, no. We’re admitting you now And that’s it. You go straight in and in the afternoon they prepared him six hours before the anaesthetic you can’t eat so they had to prepare that and then they took us in about 4 oclock.

How does that work with the Sabbath?

Yes, that was terrible. That was just an added strain [laugh]. But you know, I had planned to come home, and I didn’t. I just stayed there. So that was difficult. But I have the girls at home, you know, my older girls and they took over.

So they did the usual

Yes. They prepared things for the Sabbath. They know how to do that. But in addition to that was it was also our 25th Wedding Anniversary then [laughing].

I’m beginning to think you’re making this up now [laughs].

I know. I’m telling you [laughs]. Sometimes when I think back, I can’t believe they all happened at the same time, but it was, that Shabbat the girls wanted to make something special, but we were in hospital. And we came back, you know, we’re not allowed to travel on the Sabbath, but for this sort of reason we were. So I was in hospital with my son. My husband went back before the Sabbath and I waited until he’d recovered from the endoscopy and anaesthetic. We were given permission by the Rabbi to travel back in a taxi. So we came home on the Sabbath eve, Friday night, about 10 oclock in the evening. And they were all waiting for us with balloons and everything else. And this poor child who was lying on the settee feeling sorry for himself, but they wanted to do something.

Then on the Tuesday, I think that was the actual anniversary date, they had arranged, and they’d been arranging it for weeks, a barbecue for us. They’d bought us a barbecue for our anniversary, you know, and so they’d arranged to have a barbecue on the Tuesday night but of course we were in hospital we came home again in time for that. And we were debating whether not to have it. That sort of thing we could have not had because of our son, but in the end, you know, he’s one child amongst everybodyI don’t know. I don’t know whether it was right or wrong. I think we probably discussed it with him. Whether he k

In terms of telling people, because I know you mentioned on the telephone, that you thought it’s not something that’s widely discussed within the Jewish community.

That’s right.

Why do you think that is?

[Laughs] because we’re funny people, I think there’s very much a reluctance to discuss any kind of chronic disease within the community. Part of the problem, it must be very difficult for you to understand probably, but part of the problem will be for marriage partners. You know, in the strictly Orthodox community we have arranged marriages and I think as soon as people view it as a problem, as a health risk, they don’t want to know.

That doesn’t mean to say that you would not tell people at the time, but you don’t want people to be talking because when people talk they usually get things wrong. So, I think that’s where the reluctance comes in. I think that’s what’s feeding it.

Yes. But you have been quite open about your son’s illness?

No; not at all. In the beginning we didn’t want people to talk about it. Everyone relates to it in a different way. I didn’t want to make a huge issue of it, but I knew that people talk and get things wrong and I didn’t want everyone chattering away besides which, I think, coping with it, I didn’t want people talking to me, I couldn’t cope with that, you know. I think there is a psychological aspect there, the immediate family members knew. But I didn’t need everybody driving me mad whenever I was out on the street, I couldn’t deal with all that, and nor, more importantly, could my son. He was just coping with living day to day, existing. So, that we certainly didn’t talk. We had to tell the school. That’s something you need to go through. That’s the big issue with children. We had to inform the school because he was going to need time off school, he was going to need treatment, and, you know, all sorts of things.

And what we decided to do was just to take the headmaster into our confidence and tell him exactly what it was. He asked us what to say to the other teachers; we did not want him to tell exactly what it was. We asked that he should just say he has a stomach problem and he isn’t well and leave it at that, those that perhaps picked up what it was; fine. But I didn’t want to talk. And I think that was a sensible decision in the circumstances of our community or whatever I think that worked quite well.

Strictly Orthodox Jews will be affiliated to the Synagogues, the Synagogues have Rabbis. They are there to answer the questions relating to religious law. This is a question relating to religious law. it’s not something you would know because you don’t always go to hospital on a Friday. But if you do, then you need to know what sort of rules apply. And it wasn’t just simple, you’re not allowed to carry outside, it was very complicated. But basically here for example, on the Sabbath I don’t carry outside. I can’t carry a handbag or a handkerchief or whatever. You don’t carry and you don’t drive a car. And then in the hospital, the hospital would be considered outside, the public domain, so I couldn’t actually carry my bags down from the bedroom to the taxi. There are lots of questions involved. We had to ask someone else to carry the bags down. It sounds very silly to you, but for us that is a law.

No I understand that.

Yes. And we had to prepare the money beforehand to pay the taxi driver and the nurse, the porter that took us down, handed the money to the driver before. There were a lot of questions involved; it wasn’t just a simple question.

Has your religion helped you deal with your experiences with your son would you say?

I would hope so. it’s supposed to help us with everything, so es. I think also the fact that you have a Rabbi to turn to and you can talk to somebody. That’s why we took our son there, to discuss, anyone’s going to think, why me? Why do I have to suffer? And there’s certain commandments, laws that we keep that relate to food. So for example, on Passover it’s not just certain things we can’t eat, but certain things we are required to eat, and he couldn’t that first year, he couldn’t eat. So he was very upset, particularly as it was his bar mitzvah. He was bar mitzvahed that year. So he was officially, legally, shall we say, required to keep these laws but he couldn’t because he wasn’t well.

So having that Rabbi explain to him, No actually if you aren’t well and the doctor says you’ve got to not eat this, or not eat that, then that is what you’re required to do. You’re not required to keep the law We could tell him that, we knew that, but he is not going to listen to us, but he was able to listen to the Rabbi. And he had a lot of support from one of his teaching Rabbis in school who was very, very kind. He had a nephew with Crohn’s.