Disability

Full transcript: 'My Doctor refused to treat me if I went for gold'

Transcript: 'My Doctor refused to treat me if I went for gold' as broadcast on 22nd June 2018, presented by Beth Rose with Ali Jawad.

BETH - Hi, it's Beth Rose here with the latest BBC Ouch podcast. And I've got a question for you: what would you choose, the hobby you love or your life? British powerlifter, Ali Jawad, a double leg amputee won bronze at this year's Commonwealth Games. But as a teenager rising through the sporting ranks the last thing he expected to floor him was an illness he'd never heard of, Chron's disease. And with that diagnosis came a decision: choose life or death.

Well, first off congratulations on your medal at the Commonwealths. Tell me a bit about how it went.

ALI - Well, obviously I came out with a bronze so it went pretty far better than I expected. Obviously to actually make it to Australia was a big struggle for me. A lot of people say it's probably a miracle that I made it.

BETH - Really? What was so miraculous?

ALI - Well, because after the Rio Paralympic Games my Chron's disease flared and I've been battling it since. Last year was a very bad year: bed ridden for most of it, in and out of hospital, not training, not competing. So, in October I think I relapsed again and my chance of going to the Commonwealth Games were pretty much out by then.

BETH - The visual disability that you have?

ALI - I'm considered an amputee.

BETH - A double leg amputee. But then the thing that people might not know is you also have Chron's, which came on quite late, did it? Tell me about when it happened and why it happened.

ALI - I was at the Beijing Paralympic Games in 2008 and the night before I competed I felt quite sick. Now, I didn't think much of it because obviously in a village environment with loads of athletes bugs are bound to happen and I thought it was probably something that I ate. So, I went to the doctor and they said it was just a head cold. Now, I've had colds before and I've trained through them quite easily. This didn't feel like any head cold I've ever had before. Not only was I having symptoms of like the flu, but my stomach was really hurting and I was going to the toilet a lot more. So, basically the symptoms started to come on and overnight I'd lost about 3kg of bodyweight.

BETH - And as a powerlifter I'm guessing body weight is quite integral?

ALI - Well, if you lose that sort of weight that quick you literally do lose your strength. So, I woke up in a very bad way and we had the decision to make: do I either compete or do I get pulled out. I wanted to compete because it's taken me a long time to get there and I put in the work, and it didn't matter where I finished, I just wanted to compete. And because I was so young it wasn't about medals, it was about the experience and competing at that sort of level. So, I competed, and even though it wasn't my best performance I got through it. And I think that's what mattered to me in the end.

But I was still very, very sick; I didn't know why. I thought well, these things happen, I got unlucky, and hopefully next time I won't be sick. But obviously I didn't realise what I had back then.

BETH - I guess you probably thought oh, I've got a stomach bug or whatever. And then did it just continue?

ALI - It was weird because after I competed I got a little bit better so I just thought, I got unlucky, it was something that I ate and it was probably food poisoning. I flew back from Beijing and my symptoms got really bad. I was kind of on all fours in pain on the floor, or sometimes I'd pass out from it. I didn't know what was going on. I couldn't eat. I was seeing blood in the toilet. And in probably about eight to ten weeks I lost about two stone in body weight.

BETH - And I'm guessing as an athlete as well you didn't really have much weight to lose?

ALI - Well, actually I was quite fat back then, I was quite chubby. I lost about 14kg in probably about two months, so something was seriously wrong. Obviously I couldn't train, I couldn't actually do anything; I was bed ridden for a long time. So, I went to the GP and said, look I think I'm really sick. Their reasoning behind it was was that I went to a very stressful environment and I'd worked really, really hard so I just needed rest. I was like, I don't think this is that; I think there's something seriously wrong.

I went back two weeks afterwards, they took a blood test and then I got a call the next day saying, you need to go to hospital right now because your blood tests are abnormal, you need to go right now. So, I got rushed in, had a colonoscopy and they found out it was Chron's.

BETH - What was it like to be told that? Did you know what it was at that point, what Chron's was?

ALI - No, I had no clue. I just thought I'd get an injection or some meds and it would be it. But when I sat down with the consultant he said, this is going to change your whole life; you have to prepare to put things in place to try and limit the symptoms. There's no cure for it. And I was like, there's no cure for what? I don't get what's going on.

BETH - We should say that Chron's disease is inflammation of the digestive symptom.

ALI - Yeah.

BETH - Did they give you any management techniques? Is there a way to make sure that you don't get flare-ups, or do you just have to take them when they come?

ALI - At the time I got put on steroids straightaway. They're not anabolic steroids, they're catabolic, so they do the opposite of what anabolic does. So, anabolic is to grow and catabolic is to produce muscle wastage and stuff. So, not only was I trying to train through it, I was taking medication that actually probably made me go backwards. But it was the only thing at the time that was going to help my Chron's. And to be fair it did: I started eating properly again. But the side effects of the medication did get to me eventually. Training wasn't going very well. I wasn't recovering. I was having night-time sweats, joint pain. There are a lot of negative side effects to it.

BETH - What did you think was going to happen to your career?

ALI - Speaking to the consultant he pretty much said, from his knowledge there hasn't been a Chron's sufferer that's ever won a medal at the Olympics or Paralympics before. It would be up to me whether or not I want to pursue it because it's going to be very, very hard. He said, don't underestimate how hard it's going to be. So, obviously being an athlete having an ego you think you can do it surely, you know what you're capable of.

So, I went home that night and actually researched the amount of athletes that have got Chron's, and he was right, there was only one athlete with Chron's that only made it to the Olympics and came tenth. I think she was a canoeist from America I think. I saw a YouTube video of her and she said that she'd probably never reach her potential because of Chron's. And that scared me. I thought, wow, I've got big ambitions and she's saying that because of her Chron's it's limited her progression. And that's where the reality kind of hit me because at the time like it's one thing a doctor saying it, but when a fellow athlete says it with the condition.

BETH - And what were your friends and family saying? Were they thinking oh, sports is a tough career, maybe you should take care of yourself? Did you have that to fight against as well?

ALI - Well yeah. Everybody told me to retire.

BETH - And how old were you at this stage?

ALI - I was only like 19. I got told to retire straightaway by parents and friends. They hated seeing the struggle and the pain that I was in. Just to get through daily life was hard, let alone being in the gym 20 hours a week and trying to compete at that sort of level. I did, I tried to fight it, and in 2009 I just kept collapsing in the gym, I just couldn't give myself much more than I was giving.

BETH - Was it all the energy, you just didn't have the energy?

ALI - Yeah. So, with Chron's you get extreme fatigue, fatigue where like you just can't get out of bed. That obviously is not great for trying to lift big weights and get through a two-hour session, which was quite gruelling at times. So, I wasn't recovering. I had to make a decision whether or not do I either kill myself doing it or do I retire and try to pursue other things. I made the decision in 2009 to retire in I think it was the summer and to focus on my health.

BETH - Was that a tough decision?

ALI - Yeah, because I've always been the type of person that tries not to give up, no matter what. And for the first time I felt defeated. But at the same time I knew deep down that at the time I thought I'd given it the best I could and it just wasn't working. The Chron's got the better of me, and I didn't want to kill myself so I decided to retire.

BETH - And obviously we started this by saying congratulations at your bronze at the Commonwealth, so what happened? You obviously came out of retirement. What happened in those intervening years and what made you come back?

ALI - I took I think it was six months after I retired to try and get back to being healthy again. I got to a point where I was kind of like maybe 60%, 70% healthy. I pursued other sports at the time. My dream was also to win a Paralympic gold medal, so I thought if I can't do it in powerlifting I'll try something else. So, I flirted with rowing a little bit but I didn't like it because I'm not very fit. I actually pursued table tennis for a while. I actually pursued that for two, three months and I was actually training every single day.

BETH - Had you played table tennis before or did you just go in cold?

ALI - No. With the Chron's I thought I need a sport that's not as physically demanding, so more skill based, and I thought table tennis would probably fit me because I do like it, I like watching it, but obviously I'd never played it before. But one day I kind of like after a training session I went home and I thought, you know what, this is not me at all. My dream is to win a Paralympic medal but it's to do it in powerlifting, that's what I want.

I didn't tell my parents because they were very upset that I even mentioned it. I spoke to somebody about it and they said, well it's whether or not you risk your health for it and whether or not you ignore what other people say and pursue it. But I knew the risks, I knew the risks.

BETH - And were you living with your parents at this time or had you moved out?

ALI - At the time I was.

BETH - So, that made it a bit harder?

ALI - That made it harder. I told my parents that I want to come back. They weren't too happy. And then within that week my Chron's got worse and I got rushed in for emergency surgery that week. That saved my life. I was on the verge of dying then. That was in 2010 in March.

BETH - And did that throw everything up into the air again?

ALI - Yea, it did for me. I did not expect to get to that sort of level because I thought I was getting better, but then suddenly within a week of feeling okay I was literally in hospital on a seven-hour operation trying into save my life. It was nuts.

BETH - And this is only two years as well, isn't it, since you were diagnosed with it?

ALI -Yeah. I got diagnosed in 2009.

BETH - So, one year.

ALI - Yeah, one year.

BETH - And you were…

ALI - On an operation table, yeah, so it was crazy.

BETH - Wow. So, I guess at that point did you just think I need to get better?

ALI - No, it was actually the opposite.

BETH - Oh was it?

ALI - Yeah. So, the Commonwealth Games in Delhi were in October that year and obviously the operation was in March. The doctor said, you have to prepare your friends and family for the worst tomorrow.

BETH - Wow. Before then did you have any idea that it was that serious?

ALI - I knew it was that serious but I didn't think he was going to tell me, so.

BETH - What did you do? Did you speak to your friends and family?

ALI - I thought well, the thing is my parents are quite stressy as it is, so I thought if I told them they'd just get more stressy so I didn't tell them. I told my friends instead. I said to them the night before, if you do come to the hospital you might not even see me, I could be dead. He was like, no, you have to think positive, you can do it, you can do it. So, yeah, they were very worried.

BETH - When the doctors or the anaesthetist came up to your bed and say, okay it's time now, we're going to take you down, what was running through your mind?

ALI - To be honest I wasn't really afraid of dying. I went through hell with the last 18 months post Beijing, and I thought well, if I die I die, I don't really care; at least if I'm dead I'm not in any sort of pain anymore. And plus it wasn't really a happy period for me anyway, so I wasn't really that scared. I decided in my head if I survived it I was going to go for 2012.

BETH - So, seven hours later you woke up and had your recovery and everything. And was that it, was your mind focused on 2012, which of course was in your home city in London?

ALI - Yeah. It was quite funny because the nurse woke me up and I thought it was a dream, so I said to her, am I alive. And she was like, the operation went better than expected. And I was like, yes, come on, get in! And I knew from then on that I was going to go for 2012. But I didn't want to tell anybody until after I got out of hospital because I didn't want to worry my parents and my friends.

BETH - And what did the operation do? What was it for?

ALI - They removed I think a section of my large intestine which was very, very inflamed. The doctor said afterwards that it was the worst thing he's ever seen.

BETH - Really?

ALI - Yeah, because it was pretty bad in there.

BETH - Did you feel a difference once you'd recovered post-surgery?

ALI - Obviously the pain was still there because obviously I was cut open and everything, but when it came to the Chron's symptoms they were reduced massively, yeah. I was way better than I've ever been ever since I got diagnosed.

BETH - And then London 2012, you had 18 months training did you?

ALI - No, there were a lot of complications in the lead up to it. I made myself get to the Commonwealth Games in Delhi five months after the operation, which wasn't great because the doctor said you need six months to recover, as in no training at all. I started training two weeks after the operation.

BETH - And did your doctor know this?

ALI - He did, he had to sign me off. He didn't want to sign me off. He also said that if I do pursue it and I hurt myself again that he won't treat me.

BETH - Wow, that's a big dilemma.

ALI - Yeah. He was like, I can't do it; we've worked so hard to get you better, you knew the situation and now you're ruining it. But he said that if I prove that I can get better quick he might sign me off. So, I think I had to see him every seven days to monitor how my scar was, how my symptoms were and stuff. And two weeks after the operation I'd recovered as quick as someone that was like four or five months into it.

BETH - Wow.

ALI - It was crazy how quickly I recovered from it.

BETH - And was that because of your stamina and fitness from previous sport?

ALI - Well, hopefully probably laid down the foundations from being a very fit athlete that you can probably recover from these things quicker. But also it was just like I didn't want to give up, because I had it in my head that the Commonwealth Games are five months away and I wanted to do it. Even though training was very difficult I managed to get to the Commonwealth Games, which was crazy.

BETH - And what was it like? Was it a huge moment of satisfaction, you'd achieved what you'd set out to do?

ALI - Oh yeah. I think the night before the operation if you'd told me I'd be in the Commonwealth Games five months later I probably wouldn't have believed you. To get from that stage to the Commonwealth Games was completely nuts.

BETH - And how did it go?

ALI - I came fifth that time. For me coming fifth was obviously better than expected; I didn't want to come last. It wasn't the best performance, but for me I look back and think my medal was actually getting there, against all the odds and against all the pain that I had to go through I was satisfied with what I did. And I knew from then on that this will give me a big stepping stone to 2012. And I knew then that I was probably capable of doing it.

BETH - So, you did do 2012 and then you did Rio in 2016 where you got a silver medal?

ALI - Yeah.

BETH - So, you were as far as we know the first?

ALI - Well, I wasn't.

BETH - Oh.

ALI - The week before at the Olympics an American swimmer called Kathleen Baker she got silver and she's got Chron's. So, in the same year, in the same week two Chron's sufferers got a medal.

BETH - So, you joined the club.

ALI - Yeah, well she got it first but I'd say it's the same week: we're joint first.

BETH - And then obviously just a couple of weeks ago you had the Commonwealths and got your bronze. But I'm guessing in between all of that there was some serious management by your sports team who look after you to get you through.

ALI - Yeah.

BETH - What kinds of things do you have to take on board to manage the Chron's?

ALI - I'm part of British Weightlifting on their World Class Performance programme and I work with people that are experts in their field, so I've got a nutritionist and a psychologist and a physio and a sports scientist and team manager and a lifestyle advisor as well. They all kind of collectively work together to make me better, and I've got targets to hit for every single one of them.

BETH - What kinds of targets do you have to do?

ALI - Nutritionally obviously you have to follow the diet that was set with me. The diet focuses on obviously Chron's. The impact of training and how to recover from sessions. But mainly it focuses on my Chron's disease, because if I'm healthy I can train, and that's the main priority. Obviously with psychology it's all about being mentally better on what you can be. As a kid I used to be quite anxious before competitions, quite nervous; I think now because of everything I've been through I'm not nervous anymore.

BETH - You're in the 59kg category, is that right?

ALI - I was in Rio. After the flare I'm back to 54kg now.

BETH - Okay, so that's how much you weigh.

ALI - Yeah.

BETH - And you set the world record, I think this is the latest world record, of 185.5kg?

ALI - No, the world record was the last Commonwealth Games in Glasgow.

BETH - Oh okay.

ALI - 194kg at 59kg. It's gone now; I don't hold it anymore.

BETH - That's over double what you weigh.

ALI - Probably more than three times.

BETH - Three times, all just on your shoulders and arms. One thing I have to ask, because you got the nickname The Showman, following the coverage in Australia, because every time you did a lift that you were pleased with you did like a flip.

ALI - I did something, yeah.

BETH- You did something, like sometimes you jumped off the bench onto the ground. Now, what I've got to ask is obviously you've got your two leg stumps: does it not hurt when you land on the floor?

ALI - Well, no because obviously I was born like this so for me I've been walking on my stumps all my life so they get used to the ground.

BETH - And you've got no suspension; you can't bend your knees.

ALI - As a kid I used to play football on the concrete so my stumps are very, very used to any sort of surface.

BETH - Okay, that's good because every time it made me wince a bit.

ALI - Yeah. A lot of people are like, oh my god does that not hurt, and I'm like no, I'm used to it now so it's good.

BETH - Chron's has been in the news quite a bit lately because of the magician Dynamo has come out. He looked like he'd put lots of weight on but actually it was what they call moon face?

ALI - Yeah. So, the medication he's talking about was Prednisolone.

BETH - So, moon face is where your face looks really bloated.

ALI - Yeah. I got really, really big in a short space of time. I looked like Mr Blobby.

BETH - That must be quite hard to deal with, especially if you're in the public eye and people are always like, oh gosh, look at the weight he's put on, when it's not your weight.

ALI - Yeah. A lot of my friends were like, wow, how much weight have you put on. I think there was a week when I put on a stone. What Prednisolone does it increases your appetite to a level where you keep on eating; which is good because I lost all that weight and you want to try and get back to a healthy weight. But you put it on so quick that you're having six massive meals a day and you're still hungry. I got to a point where I thought actually, you need to try and fight the urge because you can't gain the weight in the wrong way. Obviously I was really fat so I thought this is probably not the best way to gain it. So, I tried my best to put a stop to it and start fighting the urges of eating.

BETH - That must be quite hard when your body is saying give me some food?

ALI - Yeah, especially with someone that likes food. The thing is with training, so obviously with body weight classes I was getting to a stage where I was so above my body weight class I was getting dangerous to lose the weight as well. So, I needed to have some sort of control.

BETH - Do things like Dynamo chatting quite openly about it, and obviously there was mention of you having Chron's disease in the various coverage, has that made other people understand a bit more about what you have to go through in addition to all your sports training?

ALI - In the beginning it was isn't Chron's disease to do with your diet, or people said it was IBS. We get quite angry because it's nowhere near that. But a lot of people were either misinformed or were naïve to what the symptoms were. And I think Dynamo coming out, he's a big name, hopefully it has raised awareness of what the disease does and just how bad it really is.

BETH - And you're not really taking it easy now, are you, because you've already said Tokyo 2020 is what you're aiming for? I'm guessing it's Tokyo that's circled in red on your calendar?

ALI - That's the big one, yeah.

BETH - How are you going to get there? That seems quite a long time. Are you expecting some flare-ups? Is that how it works?

ALI - I hope not. If I have one more flare I'll be out. I was quite adamant going into Australia if I had one more flare I probably will retire this time; it will retire me. My body just can't keep coming back from it. So, my job is now and the job my team has is to try and work out how we do not flare in the lead-up to Tokyo, because we know that one more flare could have severe consequences.

BETH - Is that quite feasible that you can get through there without a flare if you're really clever, accurate?

ALI - Yeah. So, my longest time without a flare is probably three years, so I can do it. I just have to make sure that I keep putting things in place and keep doing the right things. Hopefully the next 18 months I should be kind of on the road to being healthy again.

BETH - Well, I hope you get there and you do some more of your showman things.

ALI - I'll only do that if I do very well. Actually if I do quite badly and I show off it's bad!

BETH - So, we've all got to keep those fingers crossed for the next three years at least in the hope Ali doesn't suffer a flare-up or a setback. It was great chatting to Ali, The Showman, in the studios, but it's always great to hear from you too. You can find us on Facebook, we're just BBC Ouch. On Twitter we're @bbcouch. And of course you can email us ouch@bbc.co.uk.

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