Gareth - Interview 15

Age at diagnosis: 13

Brief Outline:

Gareth was diagnosed with Crohn's Disease at 13. Over the years he has had major surgery and now has nutritional food line fed directly into an artery in his heart. Crohn's has had a big impact on Gareth's life and he feels positive about the future.

Background:

Gareth is a stand up comedian.

More about me...

Gareth was diagnosed with Crohn’s Disease at the age of 13 and went on to have years of surgery and ill health. Around ten years ago his surgeon decided to put in a line and remove the jujenostomy and he now has nutritional liquid feed, fed directly into an artery in his heart. This feed takes six hours every other day and Gareth either sets it overnight or carries the feed round in a rucksack while he gets on with his life.

 

Gareth describes how his health experiences have had a massive impact on his life and he has experienced depression. In 2000, after a failed suicide attempt he became a stand-up comedian incorporating his health experiences into his act and he feels his life turned a corner. While he does gigs in support of Crohn’s charities or research, Gareth feels that he would like to move on from focusing on Crohn’s too much. Managing the line feed is a part of his life he accepts (although it puts some constraints on his ability to travel) and it has not caused a problem in relationships. He is largely positive about the future but would like a trendier rucksack to carry his feed around! 

Gareth has mixed feelings about the impact his experiences with Crohn's have had on his health and his life.

So, yes, I suppose my health bothers me its a bit of an issue. And, and I could look after myself better. I have treated my body badly. Drink. Smoke. In the past I’ve partied and done drugs. And you know, I wouldn’t take back any of it. I’ve had a great life thus far, and I will continue to do so. But I could also show a bit more respect for my body than I do, I think.

 

But I think when you, you know, when you’ve confronted the possibility of death, and you’ve been as low as I have been, you care less I think. No. I don’t know. There’s part of me that feels I, you know, I always thought I was going to die at 26. And it didn’t happen. And I thought it was a realistic thought to have. I just didn’t die at 26 and I tried to take my own life in 2000. Fortunately I didn’t, but it was a full intention to take my life, that at the point it seemed logical and it seemed the right thing to do and I’m glad it wasn’t. And I saved myself pretty much. But I suppose I also treat my body a little bit with a lack of care because in a way I’ve already died. Like, and it sounds bizarre but I have discussed it before with other people and I do feel like I kind of already went a few years ago, so now I just feel I’m in for as much fun as possible before its all over. 

 

Whereas actually I could look after myself and live to a grand old age of 110, but I also subscribe to you know, there’s a few comedians, Denis Leary said about smoking, you know, they say it takes ten years off your life, well then the ten worst years are the ten adult diaper wearing years, you can have them, I don’t want ‘em. So I suppose my attitudes a bit more like that. Good or bad.

 

Gareth thinks that if a girl really likes him she should be able to put up with him having a tube his chest ' though it may be good etiquette to mention it before she finds out for herself.

 And it hasn’t been a problem in relationships. If anything, I suppose in a way, it’s been a, you know, if a girl really likes you at the end of the day, she’s, love supersedes all, you know, if she likes you, it doesn’t matter that you’ve got this tube, and if anything, on the whole, I tend to get a lot of respect for having it, and not moaning about it. So it hasn’t really, it hasn’t really been a problem. It worries me sometimes, about new, about forging new relationships. That if a girl hasn’t, doesn’t know what I do in my stand up, or hasn’t seen any of my stuff online that talks about it, that I’m going at some point have to tell this lovely girl, oh by the way, I’ve got this tube in my chest. 

 

But if anybody reacted badly to it, they obviously weren’t the right person for me, you know, and they weren’t very cool. And in actual fact my last, not my last relationship, but the previous relationship to that, the first time I was with my partner, and I took my top off, she didn’t, she knew I was a stand up, but she hadn’t really explored what I did at that stage. We met the year I was doing… I think it was the year I was doing a solo show about my health. And we were in bed, I took my top off, and she went, “Oh my… oh what’s that?” And I went, “Tube in me chest for when I have some fluid blah blah blah.” And she was cool. 

 

Gareth describes how showing his central line tube during a performance at the Edinburgh festival silenced the audience.

I think it’s about how you deliver it. If I said to someone, “Oh there’s this really dangerous tube in me chest, and…” So most people’s reaction to it is positive, and I think I am apt to get a bit confrontational with it if anything, you know. And I actually do, if I talk, I don’t always talk about it in my stand up, and in fact I’m trying to move away from it now. But when I do do the health stuff in my stand up, I actually lift my top to show the line, so the audience knows it’s true. And it’s a really good tool for stand up because 2 o’clock in the morning in Edinburgh I remember doing a gig called Spank, which is a big gig up in Edinburgh. And 2 o’clock in the morning, the audience is really drunk. They’re loud, they’re boisterous, they’re shouting. I went on stage and did a couple of lines, got some response, and then I just lifted my shirt, and went, “Do you want to hear something? Do you want to hear about this?” And 200 odd people, 300 odd people, you shut them up, and sat back and listened and then laughed because they knew it was all true. So on some of them it’s been a great tool, you know.

Major surgery led Gareth to lose two jobs in his early twenties.

And then over the years, more surgery, a sort of massive impact I suppose on my life, you know, lots of periods of, you know, I had two full time jobs at 17 and 18, I lost both of them within six months. One was for a solicitor even, and I lost both of them within six months because I wouldn’t sacrifice my personal life for work. So I worked hard, but then I played hard, and then I burnt the candle too brightly kind of thing at both ends. And so I lost those jobs.

 

I then didn’t work for a while. And then I did a bit of work here and there and yes, just kind of in and out of hospital, surgeries, more bits from my bowel removed. They did gastric feeding at points to rest my intestine. Problems with the back end, which can be a part of Crohn’s, and that had a massive impact, sort of, how I felt, my state of mind.

 

Gareth had to educate his doctor about Crohn's. Taking part in a documentary about Crohn's meant he got to meet scientists researching the condition.

Have you sort of like found out a lot about Crohn’s?

 

Yes, when I, when I first got diagnosed my paediatrician didn’t actually know anything. I was his first, I was his first patient with Crohn’s disease, so I actually got a lot of literature from the Crohn’s organisation, the LACC. And I learned, and I passed on what I was learning to my paediatrician. So I was kind of educating him, more than anything really at the time. And yes, I know quite a bit, and I’ve been very privileged because of doing the stand up. I think I’ve been very privileged in that I’ve been afforded a few opportunities that other people wouldn’t have got. So I took part in a documentary for the community channel which was called Science and Me, Crohn's Disease and I got to meet sort of five scientists, all working on cures for Crohn’s and got to hear about different theories at sort of grass roots level which was fascinating and fantastic. 

 

And it seems to me from my layman’s position that all of them have credence to their idea. You know, there’s one idea about map bacteria which is supposed to be a bacteria that’s in milk as well as a lot of other things. Now when I was a kid I drank a tremendous amount of milk in my primary school, you know, in primary school days. And when the other kids, you know, when you used to get, have bottles of milk, before Margaret Thatcher stole them back. Well we used to get them, I used would drink the other, you know, two or three of the other kids milks. So I think sometimes well maybe there was something to that, because I did, yes, I had a really big thing for milk, I’ve got something call Crohn's Disease there’s a possibility, but there are various other possibilities as well.

 

It seems to me, like I said, that there’s weight in all of them, and actually I remember saying to one of the scientists, you know, “It seems like you all have something right. Have you ever considered that may be Crohn’s is a result of a combination of these factors? And not just one alone.” He said, “Oh I never thought about that.” But obviously they won’t meet together because they all want to be the person who finds the cure or the cause for Crohn's Disease and they need to get the research grants, and, so it just stays as a bunch of separate people, all trying to prove their theory. Just a bit unfortunate really.

 

NACC helped Gareth to feel less alone when he was first diagnosed and he has raised money for them at his gigs. But he feels he has now moved beyond the need to attend group meetings.

I did get involved with the NACC when I first was ill because I wanted to understand and I didn’t want to feel alone. Over the years I’ve disconnected from those kind of groups. I will do any help that I can for them, if it’s a charity. On Saturday I’m going to Manchester to headline a gig that’s to raise money for the NACC. In the beginning of August I’m over in Guernsey for another gig that’s to raise to money for the NACC. A couple of weeks ago I did a gig that was at the Comedy Store to raise money for a hospital that specialises in Crohn’s. 

 

I’ll do that, but I feel now like I don’t want to be around a room full of people who have got Crohn’s and it’s not about wanting to feel like I’m the only one and it’s my thing. It’s more that I, like in the past when I’ve gone to the AGMs for the NACC and things like that, brings back some bad memories really and I’ve moved beyond, well yes, I like to think I’ve moved beyond them and I obviously have. But those kind of, being around too many of those people sometimes brings it back and there’s an element amongst patients of any illness, I think, of competition, of having more operations, or I’ve had, or my Crohn’s is worse, or I’ve had, and I’ve met people like that, and fair enough if that’s you choose to conduct yourself, but I’ve made a point of I can’t tell you how many operations I’ve had on my belly. I know it’s a lot, but I haven’t racked it up. I haven’t got a tally chart, and it’s the same with any part of my body, I just try to not make it on some levels the be all and end all of who I am. 

 

Having said that, at the same time, it is part of who I am within my work, has been part of who I am, within my work and some of the work I’ve got. But I find yes, I find those groups quite difficult now. And also as of any groups they’re full of, they’re often full of people that want some level of power in some organisation. So you’re get your bad eggs in everything and I just choose now to just do my bit and help out, but not really be hands on, if I can help it, you know.

 

Gareth had years of surgery to treat his Crohn's disease and finally he had an operation to implant a nutritional food line which is fed directly into a vein into his heart.

And then it kind of it all came to a head in about ’99/2000. I’d had a tremendous amount of surgery over the years, always had the same scar, my surgeon’s a brilliant surgeon. He always cut the same scar, so I’m not massively scarred. And I was in a very bad way. I was, after more surgery I was in a very bad way. I was vomiting pretty much whenever I ate. And I was just in a really bad way. And I was given a temporary, when I was given jejunostomy which is actually most worse than a colostomy or an ileostomy, because it’s high output so the volume of fluid that comes out is litres.

 

And that was a really, really tough time, because I’d always said I didn’t want a bag. I’d always said that would be the thing that would finish me off. I would never have one. I would never accept it. And of course you adapt and it wasn’t as bad as I thought apart from the fact that I couldn’t wear jeans anymore, I had to wear springy trousers, and so I was more bothered by the fashion [laugh] problem.

 

And you had the jeju …

 

Jejunoscopy. It’s, I mean it was down here, but it’s high output, it’s basically coming straight out from the ileum, the top part of the ileum. So literally you’d eat something and within twenty minutes to half an hour that something was coming out to the bag. So I was really bad. I mean it did my head in, completely did my head in.

 

How long did you have that bag for?

 

I think because my memory’s hazy on stuff now, I think I must have had it, I must have had it six months to a year, I think. Six months to a year I reckon. Something like that. You know, I mean they did want to leave it there, and it was me saying no, no, just give me another go, and you know.

 

Why was that sort of something they didn’t consider before then if it’s such….?

 

Because it’s an, it’s an extreme thing to do. Like I mean, basically this line goes to the main, it goes up over the clavicle or under the clavicle, I’m not sure, up here, and you can see the line there, and it goes into your main artery to your heart. So what it means is it’s like sending it into the best distribution centre in the world, which the nutrition very quickly hits my heart and then gets pumped right round the whole body. It’s brilliant. But it wasn’t something they wouldn’t have considered before then because it’s expensive, it’s extreme, they’ll do them temporarily for people sometimes if they do bowel rest and stuff. I mean I had, when I had the naso gastric tube, I didn’t have to have it, I could have drank Fortisip and Ensure which are like high protein drinks and Build Up. But both Fortisip and Ensure made me heave, made me want to vomit.

 

I chose instead to go through the rigmarole of sticking a tube up my nose, because that was easier than me drinking this horrible stuff, that really was, because I just couldn’t stand up the build up stuff at all. So that’s what they used to do for sort of bowel rest.

 

And there’s probably, there’s a fair amount of people in the UK who have these lines now. But it’s a very expensive, like, I cost more to keep alive than I earn, you know, which is a weird one. I’m looking forward to the day when I earn more than I cost to keep alive, very much so. But I think a bag of my nutritional feed is about, the price has gone down, it used to be worth about £150 a bag, now it’s about £120 a bag.

 

I have eight of those every two weeks. So there’s a thousand pounds there in just the nutritional feed. Then there’s the cost of the deliveries, the cost of making it, the cost of the ancillaries, the, the gloves and the things because I have to (do) it aseptically. So I have to be a bit of a scientist myself, when I look after myself. So I probably over a month, I must cost, it must be about three grand a month. You know, so I must be 30 to 50 grand to keep alive I think. Something like that.

And have they said it’s a long term..?

Yes. I don’t it would be nice to think that maybe one day I wouldn’t have the line, but in my head I don’t perceive that that’s a possibility. Not at the moment. Maybe in twenty or thirty years. But, you know, they do bowel transplants now. But they, it’s something that they’re still trying and they only give them to people in extreme cases. People who are going to die that don’t have a bowel transplant and they may still die with a bowel transplant. My hope is there’s some kind of plastic intestine is develop that can absorb, but I don’t see how that can happen. So yes, I just imagine this is for life, and I’ve, I’ve accepted it.

Has it got easier this feed business over the years, because you’ve done it for quite a few years now?

The, the equipment’s got better. Yes, the equipment’s got better. It’s got easier yes, it’s definitely got easier. And I think, you know, I’m pretty naughty in that I cut some corners, where I, where although there are certain procedures you have to follow in order to make sure that you don’t line infection, there are other procedures that I see within the whole thing, the list of things I have to do, that I go, well actually I don’t really need to do that. That’s just being a little bit anal, so there are things where I cut corners, and actually the one, the most scariest, in fact one of the most scariest things that has happened in the last two years, was because I was getting a couple of line infections a year, because I’m a bit, you know, swift and not that careful.

They tried a new drug on me. It’s a drug. It’s like a prophylactic. You put the drug, it’s an antibiotic, you do your fluid and then when you’ve finished you inject this antibiotic prophylactic into the line. It sits in the line fighting bugs and infection and then before you hook up to your feed again, now, you take it out. But what was happening, was I was putting this stuff in, and then I would hook up to my feed and it just started occurring that I would have palpitations and I would feel like I was heaving a heart, the first time it happened I thought I was having a heart attack. It was terrifying. I was with a girlfriend. I was living with my girlfriend at that point, and I had, my legs went from under me, I had to sit down on the floor, my head went red, my veins came up on my forehead, my heart was beating in my head. I thought I was going to die, and it was painful to breath, and I didn’t call her, because that’s me just being stupid and stoic, and I’ll deal with this. I don’t want to panic her, and it kept occurring and it obviously made me scared to hook up to my feed. And no one knew what was happening, or why it was happening.

And they decided, I went to see a heart specialist at [hospital name], well [hospital name], and they decided to put in a little memory stick into my chest that I could activate when I was having one of these palpitations and it would record my heart rate. And I knew, I was pulsing myself and checking myself, and I was going up to heart rate of like 160 to 180, I was, it was really bad. And so whenever I had one I had to turn on a little listening device that could record it.

And I had a really hard time. They put it in very badly, it was sticking, it was protruding from the skin, it broke the surface of the skin, it was painful. I then had it taken out. The … Because there was an infection in it, the, the sort of the drugs to numb it while I was having it removed, didn’t work, so it was tremendous thing having this thing kind of ripped out of my chest.

And it turned out after all of that, that the antibiotic is suspended in a liquid called quinine, or quinine, which is in tonic water and all kinds of things, but quinine if it is injected into your blood stream can cause palpitations and heart problems. And no one had known that. And it literally is, so you know the decision was made now, what I do is I can inject the antibiotic, but I only inject, literally I think its 2mls to cover the length of the line, but not to go into my body, and then when I hook up again, I withdraw like more than that, so that it’s not in my body.

And a couple of times where I’ve hooked up and turned the machine on without having withdrawn the antibiotic, and the machines been on, literally for .5 of a ml pumped into me, almost immediately my head begins to start going and its terrifying I hate it. So that’s been the one bad thing that’s come about but obviously now I’m more careful with that.

Having a very short gut means Gareth mustn't eat what would normally be considered a healthy diet. Instead he eats high fat and high sugar foods.

I did, you know, I had problems with depression over the years as well. And some of that’s been pretty bad, but the last six or seven years since I’ve been doing stand up it’s just been the most productive period of my life and possibly the most healthy, even though to everybody, you know, to a layman, I would seem pretty unhealthy. You know, but I’m never going to be fat. My diet is, because of the fact that I have a short gut I mustn’t have a healthy diet, as in a conventionally healthy diet. So fibre is no good, because I have a short gut, I don’t need things to go through quicker. They already go through quicker then they should. So my diet is high fat, high sugar, if I want KFC five times a day, I can have it. If I want fried breakfast five times a day I can have it. And nobody’s concerned about my diet until I hit ten stone. I haven’t ever been ten stone. Unless I was on steroids when I was kid, you know, it just doesn’t happen. So I suppose one of the results is that I can eat crap food. But I always did eat crap food so no loss there.

 

Do you get hungry?

 

Yes, but I get hungry, but it’s, I think a lot of it is psychological. I mean obviously if my stomach, if I’ve been eating a lot, then my stomach is stretched and so therefore it is hungry and wants food. But if I got used to not eating, it would shrink. I wouldn’t be as hungry and I wouldn’t suffer for it. And I even have, because I don’t take in the full amount of weight from food, or nutrition from food. I actually have a liquid that I can connect to, that will, it’s soy bean liquid emulsion which is really fattening and I can hook up to a bag of that a week. I choose not to, because I try and eat something. But yes, I would just like, I would like view a few developments, you know, I’d like to see a cooler back pack, for my for my travels, you know.

 

Gareth's ability to spend time abroad has been affected by a six week time limit on using a basic generic intravenous feed.

The only struggle I have with it, I mean I’m lucky, I’ve had psychotherapy. I’m a stand up comedian, so I’ve been able to vent and have cathartic ways of getting rid of my feelings about it all. But I’ve accepted it that the only bugbear I have with having the line, is that I would, you know, I’m going to Australia and I’m going for six weeks, because six weeks is the maximum amount of time the hospital will let me use a generic mix of feed. Instead of using my normal nutritional feed which has to be refrigerated, because I’m travelling, I’m taking a basic generic feed, that will do the job, but it’s not as good for me as my normal feed. So they only let me go for six weeks. 

 

And personally I love Australia and you know, there’s nothing I would like more than to travel round the world for a year or so, doing stand up in various countries and I can’t do that. So that’s where I, that’s the only thing that still grates, is just my freedom slightly being, you know, that every holiday, and even this holiday to Australia was not, it’s a working trip, but this trip to Australia, I have to pay to get the nutritional fluids sent to Australia, so that’s probably going to cost me almost the price of my ticket to go to Australia, just to get the feed sent over. So the money I earn there won’t cover my trip at all. I won’t make any money from the trip, but I’ll just get to go to Australia for six weeks, you know. I’m happy about that.