It’s A Waiting Game

You know when you have a sore knee and there are days when it hurts less and days it hurts more. Regardless of the hurt, you try your best to do the things you enjoy and not let the hurt worry you too much. You wait for it to get better, hoping and believing that it will. Delaying that call to your physiotherapist and try some new stretches or some extra ice in the evening.

While I don’t have a sore knee – I do have a very angry colon and it’s kind of like that sore knee. Right now my colon is determining what I can and can’t do. While I try my best to maintain control, it’s a real challenge to assert this. Instead my colon is holding me captive and has got me in a holding pattern.

A holding pattern of generally not feeling very good at all. I have days when I feel better than the day before but honestly these better days really aren’t that great. After being sick for so long, my perspective on what “feeling good” and “feeling bad” really means are quite different from most people.

I’ve been in this flare since June 20. This is the longest flare I’ve been in since my diagnosis in 2009. Admittedly, this flare is starting to wear me down. I have days when I just can’t understand why this is happening to me. I shout out loud when I’m riding my bike and when I’m alone in the car. I shout at the sky, tears streaming down my face, demanding answers. But there are no answers. There are just the facts. The fact is I’m sick. I have to wait and maybe the new medication will work. We’ll know in eight weeks if the new medication is going to work.

Yes, eight more weeks of waiting. Eight more weeks of wondering. Eight more weeks of shouting at the sky. Eight more weeks of my answering the question “how are you feeling?” with “ah, pretty good”. Very few of you get an honest answer from me… You do the same thing. You could have an extremely sore knee but when I ask you how you’re feeling, you’ll shrug your shoulders, smirk and say “oh pretty good”.

I wish I could wake up tomorrow and be better. And in fact I did have a two week run where I tricked myself into believing that I was “cured”. Yep, a desperate person will believe anything… My symptoms went away. I felt like I did in early June. But this two-week reprieve is long gone. I’m back to where I was before (but a bit worse). I don’t know why my colon cut me some slack for two weeks – likely part of some big cruel joke on its part to get my hopes up. I’m starting to wonder if I’m actually the one in charge here.

So for now, life rolls along like normal. I work. I ride my bike. I race my cyclocross bike. I eat food that I enjoy. I wait.

Cyclocross Is Here

With September’s arrival comes cyclocross season.

There is something so special about cyclocross. (I know I write this every year….) It’s hard to pinpoint but I think tonight’s experience explains it well.

Imagine a small park with a bunch of flags organized in a 4 x 4 grid pattern on a hill and one lonely barrier in the flat at the bottom. Add into this picture nine women ranging in age from their mid-20’s to late-60’s. These women are riding all types of bikes from disc-brake enabled bikes to bikes with flat pedals. There is a set start time for the session but people arrive when they can make it based on their schedule. Everyone is relaxed and smiling.

The ladies ride around, practicing slow dismounts and mounts. Sometimes they stop and simply practice lifting their right leg over the saddle. Then they practice lifting their bikes and putting them down. They do seemingly simple and basic tasks over and over again. No one complains. They listen. Sometimes it looks like they’re just riding in a circle, but really they’re practicing always looking ahead. Looking ahead to the next barrier, the next corner, the next patch of gravel, the next obstacle.

Eventually the ladies move on to the flag grid on the hill. Working on their uphill cornering, momentum and forward focus, these women keep riding and pedaling. They are getting better. Soon it’s time to move on to a new drill. Riding the grid down the hill, no front brakes allowed and always pedaling. We discuss and dissect the best way to do this. Everyone moves forward.

At the end of the session, we talk about what to work on next week. We discuss some things to think about during the pre-ride. We talk about the different races in our local schedule. We talk about the great success that some of our junior riders are having – two of them off to the World Road Racing Championships and one a member of the Senior National Whitewater Paddling team.

Everyone is so happy to be out again riding bikes together. On Sundays, these women are all competitors and racers but once the race is over so is the competition. On Mondays we’re back together, working with one another to improve and keep moving forward.

This is what cyclocross is for me. These sessions have me feeling like myself again – the enthusiasm from this small group of women is contagious and motivates me to look forward. Who would of thought a barrier, some flags, a bike and a small park could do this?


Earlier in the week I said to Marc, “why don’t I just get it cut out?”.

On Thursday I asked my gastro doctor’s resident the same thing “why can’t you just cut it out?”.

It being my colon.

I learned on Thursday from my gastro doctor that if I really do want “it cut out”, I can have this done. He then went on to tell me that I have one other drug option left – a drug that was only recently approved by Health Canada.

So there are two treatment options left: have my colon removed or try the new drug.

It’s was a tough decision to make sitting in a small consulting room with a resident, second-year medical student and my gastro doctor siting there. My eyes were bleary and I felt like my heart was pounding so loudly that everyone could hear it.

I asked a lot of questions. I asked my gastro doctor what he would do.

And here’s what I’m going to do: I’m going to try the new drug. We’ll know within three months if it’s going to work. If it works, there are no guarantees on how long it will work. If it doesn’t work, I’ll have the surgery.

The last few days have been a bit scattered and confusing. It’s one thing for me to say angrily to Marc and others “just cut it out” but quite another to hear this from my doctor.

So this is where I am.

Still Riding Bikes


Despite everything that is going on with my health these days, most days really still do revolve around bikes. Riding bikes. Deciding where to ride bikes. Determining which bike to ride. Planning rides. Recovering from bike rides. Getting ready for the next bike ride.

Up until mid-June I was training rather seriously for the upcoming cyclocross season. I had set a goal of winning the Canadian National Masters (40 – 49) title. A big stretch goal considering where my fitness was when I started training in January with Coach Steve Weller, but I knew that so long as I did the training, I had a good chance at achieving my goal.

Once I started training again with Steve I realized how much I missed structured focussed training. It gave purpose to my rides and better yet, I could feel and see myself getting stronger and faster. My confidence was really quite high and I was starting to feel like a bike racer again. Capping this off with a super two weeks of riding in France, and well – I was crushing on the bike again.

So now I’m no longer training with Steve. This was a mutual decision. Steve has been through this ulcerative colitis roller coaster as long as I have – he was my coach when I was first diagnosed, when I raced at the World Cyclocross Championships, when I was hospitalized in Belgium, when I fractured my L3 vertebrae and when I got very sick again. He and I have worked together for so long that it was hard to pick up the phone and tell him the bad news about this ulcerative colitis flare. I know he was hoping as much as I was that somehow this would be a short flare and I’d be able to get back to training again.

But, it was not to be. We’ve trained through flares before – sometimes it’s worked out okay and other times it hasn’t been so great. This time, just like the last time, we both knew that training had to take a back seat.

Admittedly, I was super disappointed and floundered for a bit. I couldn’t see the point really in riding without a training plan and focus on my goals. Those initial rides after I realized that this wouldn’t be a “short” flare were not fun – “what’s the point?”, “I’m just going to lose my fitness anyway”, “why bother?”. But here’s the funny thing – I feel so much better when I’m riding a bike.

Sure there are days when I’m tired and I drag myself around. But more times than not, I feel great on my bike. It’s like I’m not sick at all. I don’t know if this the endorphins or if it has something to do with the brain/gut connection (more research about this all the time). But when I’m riding, my cranky colon settles down and I can ride without thinking about my disease (sure there are some crazy cramps, issues with heat management, extra concerns over dehydration, and lots of bonking happening) – but really I feel normal.

So, this is why you’ll see me lining up at the Eastern Ontario Cyclocross Series this year. I’m a bit nervous about it. When I’m healthy it can be a struggle to get to the start line with my nervous “race” stomach… So I’m not sure what will happen now that I’m in a flare. But, I won’t know if I don’t try. I really don’t know how I’ll feel out there on the race course. Up until I got sick I was doing lots of tempo intervals, long base rides and had started to get into the pointy-end of things with some threshold work – but I know that I don’t have a top end or the ability to recover from hard efforts repeatedly. So, I’ll just go out and race. I’ll try to race with my head and my technical skills – and hopefully my fitness can hang on for 50 minutes. It’s a risk of course to race – managing getting to the start line with this kind of disease is not easy – but I know if I don’t try, I’ll feel worse.

It’s not the racing that makes me want to get out there – it’s the people. There is something special about the cyclocross scene and there is something extra special about the Ottawa cyclocross scene. In the moment the racing is serious, but as soon as the race is over, it’s completely different. It’s hard to put into words, but everyone is so encouraging, supportive, helpful and really is happy to see someone improve. It’s hard to pass up this experience and sit on the sidelines watching.

So, with this being said, I should put some wheels on my trusty cyclocross bike and get out for some barrier practice… The other day I realized that if I hadn’t gotten sick, I would have been working on my technical skills for a month now. Now instead I ride where the roads and legs take me. Some days I do a long road ride. Other days all I do is bike the 22 km to work and back. Weekends see me out on my mountain bike exploring and testing my nerves. It’s different but the same. At the end of the day whether it’s V02Max intervals or a steady ride to the coffee shop – it’s still bicycle riding.

On Being Chronically Ill

I’ve written this post over and over again, and hopefully this time I’m getting it right.

I am a chronically ill person. I will be sick and dealing with illness for the rest of my life. This is an undeniable fact.

There are times when I will be in a remission and won’t be dealing with the everyday symptoms of ulcerative colitis. But even when I’m in a remission, the disease is always present. The cramps that I get for no apparent reason. The strange and sudden fatigue. The close scrutiny of every ache, pain and temperature fluctuation. The fear of being in contact with someone who “just has a cold/flu/bronchitis/strep throat/etc” and what will happen if I get your sickness. The wonder if today will be the last day of my remission and tomorrow I’ll be back dealing with an ulcerative colitis flare.

If you know me, then it’s hard to really understand and appreciate that I am a chronically ill person. It’s hard to see that behind the tan, the clear skin, the shiny hair, the robust bodyweight, and energy that I am actually very sick.

You need to know and remember that sick people often don’t look sick. Nope, we look like you on the outside. The difference is how we feel on the inside.

The other thing you need to understand is that those of us who are chronically ill – we don’t complain about colds/flus/bronchitis/strep throat/sore muscles/headaches/etc – we’ve got much bigger things to deal with. So while we seem to be able to “push through” and make the “best of it”, this is because we have no choice.

We’ve got this disease for life, it can’t be cut out, it can’t be zapped or pummelled with some cocktail of drugs. Nope, instead we take a cocktail of drugs for life. Drugs that are just as potent as chemotherapy – we swallow these in our bathrooms and kitchen on a daily basis, we get hooked up to intravenous drips every six weeks – and we do this for life. We can’t pack up and move to Europe for a year or two or go on a round-the-world trip – we need to be able to get our medication on a defined and immovable schedule.

So, yes, we may “look great” – but we’re not great. We are chronically ill. I am chronically ill. I have this for life and while the medication might give me a remission for 1.5 years (longest remission in six years) – it’s not guaranteed.

I’ve now been in a flare since early June and it doesn’t look like it’s going to end any time soon. You see the tricky thing with a disease like ulcerative colitis or Crohn’s Disease is that the doctors and scientists don’t know what causes these diseases. So there is no cure. There are only bandaid solutions. And eventually, the bandaid is going to fall off. When you get to the level of medication that I’m at, there aren’t many bandaids left. Instead it becomes a science experiment, testing out hypothesis (guesses) until we find a bandaid that sticks for a little while.

In the meantime while I may “look great”, I’m actually not. Yes, I’m still biking to work two days a week (and don’t assume that because I’m biking to work that I can’t be “that sick” – and definitely don’t say this to me…). Yes, I’m still biking on the weekends. Yes, I’m still meeting up with friends.

And yes, I’m in a constant state of exhaustion. Some days are better than others. But in between the work, biking, and just carrying on with life – I’m going to the bathroom on average 15 times a day. I go to the bathroom so much that I have to plan when I eat so I can make sure that I’m not caught somewhere without fast (and I’m talking 15 seconds fast) access to a bathroom. In addition to these constant bathroom trips, I’ve got the cramps, the headaches, the muscle aches, the stiff joints, and general awfulness that comes with being chronically ill. I know that for most of you, if you experienced the kind of “bathroom visits” that I do, you wouldn’t be going to work and you wouldn’t be going for a bike ride or braving going out in public.

But because I’m chronically ill and I’ll be dealing with this for my entire life, I like so many other people living with ulcerative colitis and Crohn’s Disease, have learned how to “live with it”. This doesn’t make it easy or “no big deal”. Shitting blood and mucous 15 times a day. Debilitating abdominal cramps. Constant muscle cramps. Ridiculously intense headaches. These are all a pretty “big deal” and when you add them all up and squish them into one day – well this is just the life of a chronically ill person.

I am a chronically ill person.

The reality is that I can’t rollover and let this take over my life. This is why I keep riding my bike, going to work, volunteering, and living life. But this isn’t easy. It may look simple but it’s not. Those of us who are chronically ill we choose to do all the things that “normal” people do because, we really have no other choice. We can’t wait for a cure or the next miracle drug. We can’t wish to wake up and be magically cured. We know that changing our diets and reducing our stress levels won’t cure us.

Chronically ill people have tried it all. We’ve drunk the green juice. We’ve given up meat and become vegans. We’ve tried resting. We’ve started meditating. We’re doing yoga. We’ve drunk the kool aid and it didn’t make a difference. Just like you would, we’ve tried it all. We’ve scoured the Internet for the latest research, we’ve bought all the books, we’ve tried all the diets, we’ve talked to the experts.

The fact is that there is no magical cure. The fact is that this is “not our fault”. There is nothing I could have done to prevent this. This is the way it is.

Number One Rule: Don’t Panic

Number One Rule: Don’t Panic

This rule got me through a lot of bike races. Whenever I would feel myself panicking, over-thinking, or riding on the front of the field when I didn’t need to be there, I’d hear both Marc and Glen in my head saying “Number one rule: don’t panic”.

When traveling to cyclocross races in Europe and my bags were lost or when I struggled to put my bikes together in a jet lagged fog or when I got a flat tire on my rental car or when I felt the pressure creeping up – the number one rule was there for me.

I’ve recently discovered that the number one rule is about so much more than bike racing. The number one rule works for regular old life as well.

I’m trying to teach Calvin the cat (we got a cat) the number one rule. Calvin is a skittish cat who twitches at a sneeze, a deep breath in or a creaking chair. We’re trying to teach Calvin that he’s safe here and there’s no need to panic.

Thanks to ulcerative colitis I get frequent daily reminders of rule number one. When I’m trying to get my cycling jersey off as fast as possible so I can get those darn bib shorts down – don’t panic. When I’m stretched out on a hospital bed waiting for a flexible sigmoid exam (as invasive and unpleasant as it sounds) – don’t panic. When I’m wondering if it’s safe to eat before getting in the car to drive to work – don’t panic. When I find out that there’s a strong chance that my medication is no longer working – don’t panic.

Really, in all life situations, panicking is the worst thing we can do. Don’t panic during a bike race – you’ll end up wasting valuable energy and becoming frustrated. Don’t panic when you can’t get the headset tightened properly on your cyclocross bike. Don’t panic when you have to go but there isn’t a bathroom in sight. Don’t panic, it will all work out eventually.

Number two rule: take it all in and enjoy the good stuff. (Easier to do when following rule number one: don’t panic.)

Reality Check

I’m sitting here at home on my back deck listening to the sounds of my neighbourhood. There are kids playing outside. Someone is watering their lawn. Dogs are barking. A plane is flying by. Birds are chirping. All familiar sounds that remind me of how good life is.

We returned home from our vacation last Saturday. To say that we had a great vacation would be an understatement. Every day was a good day. The riding was like no other riding I’d ever experienced. I tested myself physically and mentally in so many different ways. The scenery, the food, the pace of life were all simply spot on for what we needed. All in all, it was truly a gift of a vacation.

I remember during one of my rides thinking to myself “I would never have been able to do this two years ago”. And it’s true – two years ago I was still recovering from a hospitalization and trying to get myself back. I felt so good during our vacation, I felt like a “normal healthy” person. I was riding well and could feel myself getting stronger. These are such amazing feelings to have – I felt free and able to do anything I wanted.

(And now comes the hard part…)

I’m sick again. My ulcerative colitis remission ended on the day we flew home. Just typing this is so hard because I can’t deny reality anymore. The reality is I had a really good streak with my remission (almost 2.5 years) and now I’m in an ulcerative colitis flare again.

No, I don’t think it was the vacation that caused this. My rudimentary understanding of the human body tells me that it takes much longer than two weeks for the immune system to overreact. I don’t know what caused this – but of course, not even the experts studying ulcerative colitis know what causes it…

I was sad for a couple of days. But now I’m just plain old frustrated. Frustrated that I won’t be racing next week as I had planned. Frustrated that this damn disease is taking over again. Frustrated with what it is doing to Marc. Frustrated because I was doing everything “right” and it still didn’t matter. Frustrated that I might not get to do the things I enjoy. Frustrated that I’m letting a lot of people down. Frustrated because I really have no control over this.

All I can do is hope that my Remicade infusion on Monday will help turn things around. I’ve got lots of questions and no answers. Perhaps this is the worst part – not knowing what to do and what not to do.