Elderslie, New South Wales
Kane is 35 years old. He is a husband, father, son and athlete. At 31, he was diagnosed with ulcerative colitis. Even though he looks healthy, the disease fundamentally changes his life – adding pressure to relationships and limiting daily activities, sometimes to the point of being unable to leave the house.
Falling sick the first time
I was living in Toronto in Canada with my wife, Diana, and training hard for the Louisville IRONMAN. It happened all at once, it just came over me. I’d gone out for a run on the trails, and all of a sudden I needed to go to the bathroom. So I did, right then and there in the bush. There was blood.
I lived with it for a few weeks, dealing with it myself. I didn’t really want to engage with it. I was a fit guy training for triathlon. I didn’t feel – or look – sick. But a pain started in my left side and it didn’t stop. Finally, I told Diana that I needed to go to the hospital.
Diana’s best friend worked at the hospital and fast-tracked me through. They did a bunch of tests, and I was diagnosed with ulcerative colitis that night. They gave me pain relief and told me that in addition to the colitis, I was dehydrated from the training. They then told me to taper back my training, which I didn’t like.
I recovered, and I thought I could still do Louisville. I had been training for it, after all. One day when the temperature was high – too high to work outside – my employer sent us all home. So I went for a run. But as I was running I realised that I was overheating and I couldn’t train properly. Later, at home, I grew cold (even in the 40C heat). I was hallucinating by the next morning, and by lunchtime I knew I needed to go to the hospital.
They told me I was severely dehydrated again. Then they put me in the ICU. I had a pipe in every hole: a catheter, tubes, needles. They said I was at risk of organ failure, and they thought I was dying. I even got rigors and was shaking off the table. At no point did I think I was dying, although the rigors were doing my head in. Because of them, I couldn’t even lie still for the scans.
I stayed in intensive care for two days, and in hospital for a week. I am a fit man, with a resting heart rate of 50. To this day they don’t know what happened to me. They told me I am a medical anomaly; they even wrote about my case.
Still, the doctor said it was all my fault, that I shouldn’t have been training. That was a big turnaround for me. I was fit, I had done triathlons before and I was training for an IRONMAN.
And colitis isn’t my fault.
There is no known cause or cure for ulcerative colitis (or Crohn’s disease, which it is similar to). But I think stress plays a part, at least it did for me. When I first got sick I was stressed: I was training hard and living in a country I didn’t want to be in. And maybe it has something to do with genetics as well. My cousin has IBS, and my grandmother died of complications with her bowel.
Learning to live with it
I never even knew what ulcerative colitis was until I had it. Apparently it hits males at around 30 or 50. I was diagnosed at 31, right on the money.
I can tell some good war stories. Actually, I have some disgusting stories to tell. My younger sisters cringe. But unless I bring it up, colitis isn’t a topic we talk about. I don’t think it is because anyone is embarrassed, I think it is because they feel sorry for me. I don’t like that.
And it helps me if I can tell them the truth, that I had to run to the car today and shit in a box.
It is always the worst in the morning, but the morning is when I train. That has meant some pretty bad moments. When I was younger I was pretentious. If I was this sick then, I would have necked myself. Now, I’m used to it. I’ll shit anywhere. I’ve lost count of how many times I’ve shit myself – this year has been hard for that. We’ve had to buy a port-a-loo, and I wear nappies. It isn’t pretty.
I know I have a chronic disease, but I really could do with less shit.
Taking the meds
I’ve had all sorts of drugs. I hate prednisone, I think it is a cop out drug. It has ruined my teeth. I’ve also had hydrocortisone.
At this point I feel obligated to disclose to Kane that I carry a prednisone script in my handbag. My neurologist gave it to me after an unfortunate trip to the emergency department for an MS relapse, and I now don’t go anywhere without it. Kane does not look impressed.
I want to be med free. As a kid, I didn’t even want to take Panadol. But I have been in a flare since November 2014, and so there are still drugs.
I receive Remicade via intravenous injection to put the disease into remission. Deciding to try that was a big decision. I previously took a similar drug, but it didn’t work for me. When taking that I could barely walk, I had to crawl instead the pain was so bad. Remicade is a new drug, with only a few years’ research behind it. But the real problem is that if you stop and start taking it, it doesn’t work. That means I will be having an injection every month for the rest of my life, although my doctor said I might be able to move it to every six weeks.
Hospitals make me anxious, being locked up in there is a nightmare. But I believe in doctors. They have helped me – but only the ones that treat the person, and don’t just do whatever a textbook says to do. My doctor has done a phenomenal job with me. I feel looked after.
And so I take the medication she prescribes, but is frustrating. Taking medication reminds you that you are sick. At the moment I take seven different medications. Some of them are up my arse. It isn’t fun.
I saw a naturopath. I believed in everything he said, but I was too sick at the time for what he had to offer to help. Still, I think the more natural stuff I take the better off I will be.
I watch what I eat too, I know what makes me sick. Beer was a side passion of mine, but now I am doing myself no favours if I drink it. It is hard to give up, like so many other things.
Looking after myself
The guys say to me that I look fine. And when I look at myself in the mirror, I do look fine. Even with this flare, I tell people I am at 85 percent, that I am healthy. I am well enough to train, and well enough to work. But it is hard.
At the moment, the hardest part is the urgency. If I’ve got to go, I have to go. Right there.
I’ve had all sorts of tests, including a sigmoidoscopy, where they insert a camera to take a look around. The tests are physically invasive, they require an enema first, and I end up having to take the day off work. I love the anaesthetic though. I’m almost addicted to that part, when there is no control and no pain.
I was diagnosed in Canada, but we moved back to Australia because I was unhappy there. The weather, my job, and of course the colitis. I think our quality of life is better here, although my current job doesn’t give me the satisfaction that I thought it would.
Everyone thinks it is my training that is making me sick. It isn’t, I can tell. My health has improved since I started training. Sure, you can overdo training sometimes. But for me, it helps. My intention is not just to do it; it is to win. I’m competitive, and people around me know that. And the training is good for my mental health, it is how I manage stress. My dad can attest to that – if we don’t do our training we get antsy. Years ago my dad took me for my first adventure race at Oberon, and after that I could smile again. I then did a novice triathlon, and I was hooked. It is addictive.
With the colitis, I’ve tried to get away from triathlon. I played cricket for a season in nappies. But I was so worried about needing to go in the middle of the cricket field I couldn’t concentrate. It was the worst season I ever played. I was wearing white, for Gods sake. And out there you have time to think. Thank god it never happened on the field.
I read Beyond Training by Ben Greenfield. It has helped me to just get on with everything.
You know, I lost another pair of underwear this morning. It just happens. But for the rest of the run I was fine. People shit themselves all the time in IRONMAN. I’ll just be one of the boys. But I don’t even think about it during a race. I think it is the adrenalin – it overcomes the urge to go.
Thinking about my family
My son Dante is three years old. Having him is where it all changed for me. I didn’t fear death until I became a father. With Dante, I feel a sense of responsibility, he is so precious.
And I don’t want Dante to have colitis. I’d feel 100 per cent guilty if it ever happened to him.
I feel bad for Diana that she is so close to her Canadian family, and I brought her to the other side of the word. I just wasn’t happy in Canada. I couldn’t make money there, as carpenters don’t work in the winter because it is too cold. Diana works hard here, and the long hours and my limited activities does impact our family life. I wish we had dinner together as a family each night. I get to eat with Dante, but Diana often isn’t home.
I often shake my head and wonder what I did to deserve this. I don’t want to become a burden. I’m glad I am the one that got sick, I don’t think I could handle it if I couldn’t help Dante or Diana. It is easier to deal with it myself. But things do get to me. Like the colitis. I fight back, but it is hard. I can be angry, even though I don’t often show emotion.
The biggest thing for me is that I don’t want anyone to feel sorry for me. I don’t need it, and I don’t want it. Even though people don’t realise how sick I am, I can still compete against healthy athletes.
I always think of my family when I am out riding or running. And I wonder what I would be like if I wasn’t sick. But I have to keep pushing forward, I think that is how to live my life.
Planning for the future
Last time I was there they raised the idea of removing my large intestine and inserting a j-pouch (otherwise known as an ileal pouch-anal anastomosis). A j-pouch would connect my small intestine to my rectum and I could control my stool. It could be that, or a colostomy bag on my abdomen. That would get rid of the colitis. But it would have its own problems.
I’d rather just continue as I am now. I’d rather be dead than have a bag. I can’t picture myself living with a bag on me. I’m not embarrassed – I just don’t want it. I refuse, I just can’t see it happening. People think the j-pouch will improve my quality of life. But for me, it will just change one problem for another. I just don’t see it happening.
The thing is, until you get sick, you don’t appreciate life. I look back and I think it was all pretty easy, until colitis turned my life upside down. Now I don’t take anything for granted.
There have been other issues to. In April the doctors found polyps. I’ve never been scared before, but I was scared then. Polyps can be cancerous. If they ever find more there, or there is something wrong with them, I want them cut them out. It was nerve-wracking… they took photos of my insides. But I had another sigmoidoscopy in October and the results were good: the polyps are not cancerous and there is improvement with the colitis.
And so I’m in training again. I’m aiming Western Sydney 70.3 this weekend (a half IRONMAN), and I’m on track to make the start of IRONMAN New Zealand in March 2016.
I’m determined. To this day I have never been well enough to make the start of an IRONMAN. But I picture myself running down that final IRONMAN strip. It has eluded me so far, but I will get there. Maybe even to KONA. I’m going to get there if it kills me.
Anyway, I don’t feel that I will die. But maybe that is because I just do what I need to to get through each day.
After interviewing Kane I look up his medication, Remicade. Is decreases the ability of his immune system to fight infections (like Gilenya, my own medication for Multiple Sclerosis). The list of potential side effects is long and depressing, and includes infections such as tuberculosis and developing lymphoma or other forms of cancer.