JP - Interview 23

Age at interview: 45

Brief Outline: JP was diagnosed with Crohn's disease aged 21. He had an ilium septum then experienced fifteen years of bowel discomfort before the medication Questran light relieved the symptoms. JP feels Crohn's is linked to anxiety.

Background: JP works in property, he is married with one daughter. Ethnic background/nationality: Jewish

More about me...

JP was diagnosed with Crohn’s disease after a year of experiencing discomfort in his late teens. He suspected he had Crohn’s because his sister had the condition. He had an ilium septum and then spent the following fifteen years experiencing discomfort as an outcome of a “stomach full of holes”. JP’s strategy at this point was to ‘party hard’ because he felt his health had been taken away from him.

 

He tried a device called a kosmed box which works on the same principle as acupuncture but unfortunately this caused him to develop an abscess which he had for a few years. He went back to the doctor who prescribed Questran light, a similar treatment to one JP had tried, unsuccessfully, years before. This time the medication was effective and for the past ten years, he has experienced what he calls normal health with only the occasional flare up of discomfort when he is under extreme stress.

 

JP thinks there is a strong correlation between Crohn’s and anxiety and he is not surprised that the condition is prevalent among Jewish people. He has not felt the need to become involved in support groups because he does not feel he has really experienced Crohn’s since his operation. His approach has been to get on with life as much as possible, despite the debilitating effects of the condition. 

JP says his condition didn't stop him being employed or the lifestyle he was leading.

You get on with it to be honest. It doesn’t make any difference. I don’t think... it didn’t stop me being employed, and the lifestyle I was leading at the time, I was partying hard, so you know, I was in no way invalided by going to the toilet ten times a day. And at the time I think it just shows how you are in life, you get on with what you get on with it, you don’t actually acknowledge that you have a great, you know, that you have a great difficulty. I mean yes, there’d be some days... there’d be some days when I’m sure, my functioning, the utility, the only way I could work was hampered by… I’d frequently go to the toilet six or eight times a day. I’d frequently have about twenty minutes feeling weak after I’ve been to the toilet. But it doesn’t actually stop you doing it.

 

Do you still consider yourself to have Crohn’s?

 

Well you do. You have to be careful with this language. Funnily enough I said I used to say, “I don’t have Crohn’s anymore” and when for instance, if it came to changing medical insurers, I wouldn’t do it. Because a new medical insurance would exclude me for Crohn’s, and that would be a risk that I couldn’t take, and every few years... I have a very stressful thing happened in November last year I got really upset about something and for about ten days, I thought I had it back. Well literally, nearly every time I went to the toilet, had the undigested food. So I don’t think you think you can ever fully say you don’t have Crohn’s, albeit there have been times when I’ve liked to think that. But I’m probably kidding myself. 

JP doesn't find the idea of support groups helpful in any way. There is nothing worse than...

Have you sort of got involved with any support groups?

 

No.

 

Can …?

 

I would really hate to do that. I mean, you know, I went, I had a friend who was ill with it and I used go and visit him, and it used to scare the crap out of me, because you go into hospital you see people who’ve got… I mean I’ve led a normal life with it. But if you go into hospital then you see people with the same disease with you that are living hospital lives. It’s absolutely terrifying.

 

This guy, who is a very good friend of my younger brother, he pretty much got hooked on the codeine and abused it. And he’s a weak person. And, I think he got, he got terrible depression. I mean catastrophically for him, he managed to use his Crohn’s to get himself on disability benefit which has ended his life. Because he had a £100 a week which isn’t enough to live, but it’s enough just to keep the wolf from the door, you know, he used the codeine the wrong way. He used other pharmaceuticals that he ended up getting prescribed as a result of it. And I don’t want to sound sanctimonious, I suppose it does sound a bit sanctimonious but I believe he had something largely similar to what I had.

 

Maybe, he probably had it a bit worse, but he just messed his life up. He just had no, maybe he had it a lot worse than me, maybe that’s a harsh thing to say. But his life was... I mean I gather now, he’s now talking to his family, but his life was basically ruined – by having this. But I also think the worst thing that could ever happen to him was disability benefit which is just a way in which you don’t deal with life, you know, you’ve got just enough money to feed yourself. So you don’t go and get a job, and he’s spent his whole life feeling sorry for himself. And taking the pharmaceuticals … taking I can’t remember what it was, I think he got into other things as well as the codeine. I can’t remember what it was now, but it destroyed him, the Crohn’s, just destroyed him.

 

But I never needed a support group and I’ve got my sister there anyway. And I’ve got three sisters. One has serious Crohn’s like I’ve got, and the other two have really got Colitis or Crohn’s too. So it’s permeated the entire family in my generation.

 

And the only support you’ve said, you’ve had your sister?

 

Yes.

 

You haven’t felt like seeking support outside of …?

 

No. No I mean I’ve got Crohn’s, I’ve got Crohn’s Association stuff, but I always, I never really had active Crohn’s and so, not after that operation. I didn’t think there was much in it for me, and it was, as I said, I don’t, I didn’t even, when I had those check ups I didn’t like going to hospital. I don’t like being around other sick people. I don’t like seeing other Crohn’s people looking shit. You know, there’s no use you having depression, you just soldier on.

 

Did you read much about it?

 

No.

 

Have you ever looked on the internet?

 

No I don’t want anything to do with it. Every now and then if a new cure has come up I might have a look at it, but I didn’t, I didn’t consider myself, I consider myself to be leading a normal life afterwards. Notwithstanding I went to the toilet a lot. Occasionally there’d be something in press about oh this big new cure, I have a quick l

For the last ten years JP has been taking Questran Light which has reduced his Crohn's disease...

I experimented about ten years ago, trying to address the repeated going to the loo all the time, and ended up using a thing called a Kosmed device which is a Russian black box, that works on the same principle as acupuncture and that hopefully would teach your body to mend itself. It’s a very powerful science, but not well understood, and the consequence of it for me, was that it gave me an anal abscess, and that actually made me go and see a wise doctor, at the [hospital], when trying to deal with the abscess prescribed Questran Light. I had been given a Questran product when I was first operated on, but it didn’t seem to work at that stage. 

 

But taking this Questran light fifteen years later had had a miraculous effect on me. It is a solution which soaks up all the bowel salts and means that I go to the toilet once or perhaps twice a day like a normal person. I am as regular as any normal person would be, and have been for the last ten years. So I’m in the very unusual position of having had very ordinary health for fifteen years, but completely normal health for the past ten years, which is very unusual and makes you tremendously appreciative of having good health. Certainly on the odd occasions when I do get a bad week from Crohn’s which will happen if I’m totally stressed out, or it can happen from time to time. I simply can’t believe I lived the way I had to live, but you do.

 

Can you, you said when you were, after you’d had the operation, did that effectively get rid of the Crohn’s and you were just …?

 

Yes, they cut out...I mean the way I understand it, I’ve never, ever in all my checkups post that major operation, I don’t believe I ever had active Crohn’s. I’ve had the odd flare up when I can’t make a stool, and it feels like I am a Crohnsy person. I don’t believe, when they test your blood, I don’t think I’ve ever been really sick since then. However, your intestines, they get shattered; there’s too many holes in them. There’s too many ulcers in them. They’re just splintered as it were. 

 

Ironically using alternative medicine threw me back onto traditional medicine where of course there was a product waiting for me that was ideal and suited me down to the ground and you know, it led to me, a complete recovery, and I don’t know anybody, I suppose somebody who has had cancer, might have had the same feelings, but you know, I would generally most mornings I still feel grateful every morning, because for fifteen years, I would go to the toilet and it would be a very unpleasant affair. So, you know, I’m still am very grateful that I have got this product because it changed my life.

 

JP has experimented with diet in the past but now that he is on a different medication he feels...

And have you tried to change your diet at any point?

 

I did try and mess around with diet. Definitely when I was bad diet affected it. I mean there are some things, you know, you could, when the thing was active you would never digest mushrooms or sweet corn or things that are incredibly fibrous. But I don’t really need to now. As I say, I’m literally one hundred per cent well with it, which is ironic that have to be sitting with an abscess this morning. 

 

JP got on with his life despite the debilitating effects Crohn's disease had on him, but he felt...

This certainly coloured my life. I have been much better in the last ten years. I have been able to do things like go to the gym which I certainly wouldn’t have been able to do previously when I was going to the loo ten times a day, and, I suppose made me sufficiently angry that I’d been ill that I would smoke and party a lot, because I just figured that your health was not within your own gift in any event.

 

So it was hugely debilitating for many years, but you crack on, and you get on with it, and it doesn’t give me any difficulties at all anymore.

 

I mean in terms of employment or relationships what sort of effect did that have on your life?

 

You get on with it to be honest. It doesn’t make any difference. I don’t think… it didn’t stop me being employed, and the lifestyle I was leading at the time, I was partying hard, so you know, I was in no way invalided by going to the toilet ten times a day. And at the time I think it just shows how you are in life, you get on with what you get on with it, you don’t actually acknowledge that you have a great, you know, that you have a great difficulty. I mean yes, there’d be some days... there’d be some days when I’m sure, my functioning, the utility, the only way I could work was hampered by, I’d frequently go to the toilet six or eight times a day. I’d frequently have about twenty minutes feeling weak after I’ve been to the toilet. But it doesn’t actually stop you doing it.

 

Can you remember how you felt at that time, experiencing that?

 

Well I mean physically you felt exhausted after a horrible session on the toilet like that, you just want to go and lie down for half an hour. And I don’t, I mean I feel I’ve used the word angry before, but I don’t think I was angry about it, but I smoked cigarettes and partied. And I just thought, oh fuck it. [small laugh] I definitely, it definitely fed my recklessness because I considered that my health had been taken away from me in any event, so I might as well just enjoy life as I choose.