May 19 is World IBD Day

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Today is World IBD Day – a day to spread awareness about Crohn’s Disease and Ulcerative Colitis the two diseases that are Inflammatory Bowel Diseases (IBD).

For many years, this day would have not resonated with me. But now it does. Very profoundly. We need to do all we can to raise awareness of IBD and how these disease impact so many Canadians and many others living through-out the world. Speaking from personal experience, ulcerative colitis has changed my life. Drastically.

Not a day goes by that I don’t think about ulcerative colitis and wonder if this is a day that I will remain in “remission” or will I end up in a “flare”… because there is no known cause for ulcerative colitis and Crohn’s Disease – there are no known cures. The only options for those of us living with these disease are drugs – and unfortunately the sicker we are, the stronger the drugs with rather severe side effects and related-symptoms.

Too many people have said to me “well, you won’t die from ulcerative colitis” or “at least it’s not cancer” or “it could be worse” or “you don’t look sick”. These are the worst possible things to tell someone like me. The actual truth is I could die from this disease – my bowels could rupture and I could end up very very ill, because I have a very reduced immune system (due to the medication I take) I’m super susceptible to colds, flus, and other viruses that if not careful could turn into pneumonia or other life-threatening infections, my cancer risk is now very high (a side effect of the drugs I’m currently on and the ones I was on), and yes although I run, bike, and look really good – I’m still sick.

I am a sick person. This is a hard thing to live with. But luckily right now (knock on wood) I’m a sick person who is thriving and doing well. Next week – who knows? All I and so many other people with IBD can do is take the day for what it is and make the most of it.

When people ask me about ulcerative colitis and what it’s like, I’m very honest – there is no need to be shy about about what this disease does to me. It is because people don’t want to talk about it that so many people don’t realize how horrible it really is. I never thought that at the age of 41 I would have to wear adult diapers just so I could go out and watch Marc race his cyclo-cross bike. I never thought that I would loose control of my bowels in Loblaws. I never thought that I would have to pack extra pants and underwear with me when going to work – just in case something happened. I never thought I’d go from being a person who used to race a bicycle to being someone who was thrilled to ride a bike for 30 minutes. I never thought that I would get sick.

But this is the way it is. The thing is, I’m one of the lucky ones. I have so many friends living with Crohn’s Disease and ulcerative colitis who can’t do a fraction of the things I do.  And these friend were all people who were “healthy” and lived full lives before getting sick.

Here are some stats about IBD (I copied these from my friend MJ’s blog):

  • There is no cure for IBD.
  • About 1 in 350 people worldwide suffer from IBD.
  • Here in Canada, we have the highest rate with 1 in 150 (about 233,000 people; of this, 129,000 have Crohn’s Disease and 104,000 have Ulcerative Colitis). The lowest rates are in British Columbia, and the highest in Nova Scotia and Québec.
  • The number of people newly diagnosed with Crohn’s Disease is greater than the number of people newly diagnosed with UC. Every year, there are 10,200 new cases of IBD in Canada: 5,700 people with Crohn’s Disease and 4,500 people with UC.
  • The rate of newly diagnosed cases in children is increasing, and is approximately double the rate of adults.
  • IBD can be diagnosed at any age but typical age of onset is people in their 20s. There is a higher frequency of Crohn’s Disease in female adults in Canada, while boys are more commonly affected by IBD than girls in childhood.
  • Genetics is involved in IBD, shown by clustering within families and the identification of several genes which are more common in people with CD.
  • People with IBD face an elevated risk of developing colorectal cancer.
  • People with Crohn’s Disease face a significantly elevated risk of premature death (almost 50% higher) than the general public, due mainly to cancer, cardiovascular disease, respiratory disease, GI diseases, infections, and complications following medical and surgical interventions.
  • IBD is more than twice as common as multiple sclerosis or Parkinson’s disease and about as common as Type I diabetes or epilepsy.
  • Quality of life, career options, sense of self-worth and self-esteem, intimacy and personal freedoms are all significantly affected when someone suffers from Crohn’s Disease or Ulcerative Colitis.
  • IBD is largely a disease of the developed world, with an increase in rates of Crohn’s Disease as a country becomes industrialized.

Thanks for reading this post and remember that if you have any symptoms such as blood in your stools, constant diarrhea, severe stomach cramps and pain, or unexplained weight loss, – don’t ignore these symptoms. These are not symptoms to “tough out” or to “ignore” because you’re too embarrassed to discuss them with your doctor.

Ulcerative colitis has changed my life. Ulcerative colitis has changed Marc’s life. I really would like it not to change anyone else’s life.

 

Adding It All Up

8:00 a.m.: Wake up and start the day.  Drink 500 ml of water and swallow a bunch of supplements.

9:00 a.m.: Make breakfast: 1/2 cup of oats, spoonful of chia seeds cooked with 1 1/2 cups of water, unsweetened almond milk, one banana and peanut butter. Finish eating at around 9:45. Drink 500 ml of water.

10:00 – 12:00 p.m.: Lounge around the house reading the paper and sitting outside thinking about riding.

12:15 p.m.: Get kitted up in shorts, jersey, lightweight undershirt and fill pockets with two packages of Clif Bloks and two Clif Shot Gels. Stuff extra tubes, a pump, arm warmers (?), money, bank card and credit card into pockets. Fill two large bottles with water and stick them in my bottle cages.

12:30 p.m.: Start riding at close to the warmest part of the day. Head out directly into the fierce headwind with the goal of riding to Merrickville. This has me riding in either a crosswind or headwind for 2 hours and 13 minutes. During the 2 hours and 13 minutes of steady hardish riding I drink about half a bottle of water and consume 4 Clif Bloks (around 180 calories).

2:45 p.m.: Arrive at the Neighhbourhood Cafe just outside of Merrickville. Purchase two massive freshly baked chocolate chip cookies, 1 bottle of water and 1 can of root beer. Have trouble with math and counting out the loonies and quarters. Sit down at a picnic table and immediately feel very cold and notice I’m covered in goosebumps – assume this is because I’m in the “shade” and wind…

3:00 pm.: Top up my water bottle and start riding back to Ottawa. With a very strong tailwind I’ve gone from 18 – 20 km/hour on the way out to 38 – 42 km/hour on the way home. Feeling like a monster. Riding a much smaller gear than is normal. Notice that my left knee is rather stiff and sore (it was on the way out but I kind of forgot about it). Make it to Becket’s Landing in record time on nary a drop of water or food – feeling like the Incredible Hulk. Proceed to ride down McCordick Road (one of my favourite roads) and begin to feel rotten – knee is sore, the crosswind is horrible (it really wasn’t), my bum hurts, and my triceps begin to ache. I eat the last two Clif Bloks in my first package (around 20 calories) and drink water. The wheels begin to fall off, I’m feeling very slow and not enjoying my ride. I think about calling someone to pick me up.

4:00 p.m.: Decide to take a Clif Shot Gel and drink lots of water. Still riding in the crosswind but making progress home. Knee is sore. Triceps are full of lactic acid. Feeling like the Pilsbury Dough Boy.

5:15 p.m.: Crawl up the driveway. Finally home. Took me almost the same amount of time to get home as it did to ride to Merrickville… Important to understand how crazy the winds were on the way out – should have been a much quicker ride home. Look in the mirror – I’m encrusted in white salt – I have it in my hair, all over my arms and legs, and my face is coated.

6:00 p.m.: I feel rotten. My arms are looking a bit pink. Drag myself out to eat – no energy to cook. Have hardly an appetite. Sit around all night feeling like I’ve been hit by a truck.

9:30 p.m.: Go to bed. My arms by now are bright bright red and burning hot. Sunburned and swollen. Restless night of sleep and I end up sleeping until 8:00 a.m. on Monday morning (usually I get up at 6:00 a.m. without an alarm clock). Have a splitting headache and my legs are dead. My arms are radiating heat and very swollen.

All of these little mistakes that I made during my day on Sunday May 11, could have ended up being very very bad. I think the only thing that got me home was sheer will and the crazy thinking that this suffering was good for me. I didn’t need to suffer on that ride and I shouldn’t have – if I’d eaten and drank more on the way out, had drank more water while sitting for a bit in Merrickville, had not pushed such a small gear on the way back, had eaten and drank more while riding, and by remembering that it was my longest solo ride this season on such a hot windy day – this would have been a very different blog post.

I know better. I’ve been riding for a long time now. Taken individually – not eating enough, not drinking enough, not listening to the body, being stubborn, ignoring the weather – these things are bad enough – but add them all up and squish them into a four hour ride and bad things happen. Luckily, I’m generally feeling okay today – just dealing with the residual effects of a bad sunburn….

The next time you head out on a long ride or even a short hard ride – remember how easy it is to make little mistakes that end up hurting your training.

Weekend Activity

Monday morning and my legs are tired. I didn’t realize they were tired until I walked a very short distance to my local Sbucks… I kind of missed this feeling of tired legs and I’m very happy to heavy and sluggish legs today.

This feeling of tired legs is a sign that I had some fun on the weekend and pushed myself just a little bit. The satisfaction of this feeling is hard to describe but for me it is one that encapsulates some of the best aspects of life: fresh air, good friends, a healthy body, freedom to move, and a strong family. I’m lucky to have these in spades and to be able to reap the benefits of these often overlooked cornerstones of a great life.

Saturday saw me riding around the Gatineau Park with a most excellent group of women. The weather was a bit ugly at the start, but we were all committed to meeting and riding so this is what we did. Strength in numbers definitely made it easier to put on the rain cape and booties on a rather damp Saturday morning. The ride was not spectacular for its distance or pace – rather it was the people. Spanning an age range from mid-20s to early-50s with a varied sporting background, we all found common satisfaction on our bikes. We pedaled and rode the hills of the Gatineau Park. We shared stories, encouraged one another, and simply had a great time out there. I haven’t ben able to do such a bike ride in a very long time – when there isn’t a “training goal” attached to the ride – instead I just rode my bike to ride it. Yes, it was just what I needed – thanks ladies for the ride!

Happy to reach Champlain Lookout

Happy to reach Champlain Lookout

On Sunday I left my bike in the garage and strapped on my running shoes for a fun romp around the trails of Camp Fortune. MEC organized an excellent trail race that had us running all over the trails, enjoying the mud, puddles, snow (yes snow), and some slippery downhills. The course was challenging with tough technical climbs and descents – just what you need on a Sunday morning to wake you up and keep you focused. While at times I cursed the race organizer for such a challenging course, I thoroughly enjoyed spending my morning getting very muddy and wet. There were times during the race when my legs were definitely unhappy and I was getting all sorts of negative messaging from my brain – luckily I’ve got some experience with this fatigue and pain-induced brain chatter to push this aside and to keep on running. My focus for the trail race was to pick up my feet and at all times to keep moving. When I start thinking – I slow down and in running this often means my feet stop moving (when racing my ‘cross bike this meant I would brake). Luckily I managed to succeed with these two goals – I didn’t trip and I was moving at all times. I didn’t worry about my “result” or how long it took me – I just wanted a good hard run on some challenging terrain. An extra bonus was hanging out with a few folks from the Natural Fitness Labs trail running group and sharing some “war stories” afterwards. (Huge congrats to Lise for taking 1st place in the 5.5 km race and to Dave for his 2nd place in the 11 km race!)

All in all, a great way to spend the weekend. There is nothing quite like playing outside and doing it with good people. I sure hope every weekend (heck every day) is like this.

 

Longterm?

Yeesh, I’ve been trying to write something here for 30 minutes now and I just can’t do it. I sat down with the idea to write about long-term prognosis… this is not an easy topic to write about. And also one that I haven’t thought about all that much.

Maybe it’s because lately whenever I’ve made far-reaching plans and goals, these have been trampled on thanks to ulcerative colitis.

Maybe it’s because when I think back to what my life was like a few years ago when I was still racing cyclo-cross, I really thought I’d always be doing it.

Maybe it’s because when I started on my cyclo-cross racing journey, I never really thought about where it would take me and how it would shape  me.

Maybe it’s because living with a disease like ulcerative colitis brings such a high level of uncertainty into every aspect of my life, it is much easier and more safe to think only about the immediate.

Maybe it’s because I’ve learned the hard way that I can feel great today and be so super sick tomorrow.

So when my colleague asked me about my longterm prognosis, I really didn’t know what to say.

Will I develop anti-bodies to the medication that is currently keeping me feeling better?

Will I keep getting these flare-like symptoms that have me walking on eggshells?

Will I have to keep going to the doctor every week to get a shot in my arm full of drugs that are designed to counteract the side effects of my other drug?

Will the iron infusions actually work and give me the energy I desperately want?

Will my bowels explode when I’m in Loblaws and at the farthest point possible from the bathroom?

Will my illness rear it’s ugly head just in time to hamper Marc’s road racing and cyclo-cross racing seasons again?

Will the slightly longer and harder run I do on Sunday push my body over the edge and make me sick?

I don’t know. I don’t have the answers. And these are questions that I try not think about much. Because these questions represent my longterm. It’s like trying to walk along a balance beam with both eyes closed while wearing stilettos (no haven’t actually attempted this…) – I just don’t want to think about how badly things could go.

So no, I don’t think about my longterm prognosis. I’m just trying to enjoy how I feel today. Today I feel goodish. Today marks my fourth medical appointment this week. But such is life and this week is a bit of an anomaly. Today I get my Remicade infusion and then I’ll go for a run on some local trails and tonight maybe I’ll go out for supper with my favourite guy. This weekend I’ll be out on my bike with some rad ladies from the trail running group, Sunday I’ll go run around the trails at Camp Fortune and cap the weekend off with a super supper at the Green Door with some very cool friends. So that’s how my longterm is shaping up. What about you?

Fun and Good Times

Finally we can breathe a big sigh of relief – spring is here and we don’t have to shovel any snow for a little while (hopefully I didn’t just jinx all of us…). I’m super happy to see and experience spring’s arrival. I really tried to embrace winter, but frankly it was a long and cold winter – the skate skiing and snowshoe running  helped but really, I’d be happy with spring and summer all year round… Okay now that my little weather rant is out of the way, let’s get to the fun and good stuff.

Lately the fun and good stuff has included:

  • Bike riding: yes, I missed my bike so much. I realized during one of my first rides of the season that I love riding my bike. I feel comfortable and natural on it. It fits me and I fit it. This year my bike riding is at a much more relaxed and steady pace – I’m not bound by a training plan, rather I’m just riding based on a “how I feel plan” – so far so good.
  • Trail running: I’ve been doing a lot (well, a lot for me) of trail running lately. I’m trying to slowly build up my endurance, strength and trail running skills in preparation for the Ultimate XC at the end of June. I’ve been exploring some fun new-to-me trails and thoroughly enjoying every minute of it. I’ve lucked out to have some great running partners which keeps the running interesting and entertaining – sometimes it seems like we’re laughing harder than we are running!
  • Birthday celebration: my birthday has come and gone and it was a very good one. I was lucky to celebrate with my favourite guy and some very good friends. I had a relaxing day filled with trail running, chocolate, the Sunday New York Times, bike riding and a very nice dinner with good and special folks.
  • New niece: my wee little niece was born on March 25th. Merryn Lilly Thomas is a beauty of a little girl who is being showered with love and attention from her mom, dad and most wonderfully from her big brother Henry (all of four years old). My heart melts when I see my nephew sing songs to Merryn when she is crying. And now for some reason I feel this strange urge to buy every pink baby item I see… Yes, being an aunt is pretty darn awesome.
  • Back deck: my dad built us a back deck last summer. What a treat it is to walk out onto the deck in the morning and enjoy my backyard. So very happy to have this addition. Old Murphy is pretty happy with the deck as well.
  • Health: slowly but surely I’m starting to feel like my old self. My energy levels are getting back to normal and I just feel good. Still a long way to go to 100% but I believe it is slow and steady that wins this race. So far the new medicine is working out well. The iron infusions will soon start to make a big difference in my energy levels.
  • Good friends: there is nothing like good friends to help you through tough spots and to remind you what friendship really is about.
  • Favourite guy: little known fact that this year, we’ll have been married for 10 years and together for 20…. this is pretty huge and I’m so darn lucky to have this man in my life.
  • Old Murphy: the Murphster is getting up there in age – 19 now. But he is still trucking along. He patrols the backyard, tries to escape down our driveway, wakes us (okay me) up at 5 a.m for food, and chases the laser pointer around like a 19 month old kitten.

Yes, so this pretty much sums up life as of late. I’m feeling very lucky and fortunate these days. I’m pretty confident that this 42nd year will be full of super fun and good stuff.

Here’s a few of my favourite photos from the weekend that wrap up this post nicely:

Me and Sally in Merrickville

Me and Sally in Merrickville

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Stuart took this photo of me and Laco before we started running and skiing at Camp Fortune

A great photo taken by Stuart of me and Stephen at Camp Fortune

 

Optimistic

Today has been a particularly good day. In fact as a result of today, I’m feeling rather optimistic about the days ahead. I think this is the perfect place to be  considering my41st year is drawing to a close – and admittedly it wasn’t one of my favourite years. Yes, there was lots of good stuff that happened but I feel it was punctuated with more downs and missed opportunities than checkmarks in the win column. (But this is what life is all about…)

Some might think that starting the day with an iron infusion is not the best way to begin a day, but I couldn’t have been happier to be sitting at Ambulatory Care this morning hooked up to an I.V. and being pumped full of iron. You see, these iron infusions are so so useful in getting me back to feeling like my old self. As a person who can’t take iron pills, there is no other real tangible way to get my iron stores out  of the abysmal single digits.

My afternoon was spent meeting with a new-to-me doctor. Finally five years after being diagnosed with ulcerative colitis, I had an appointment with an IBD specialist. I was so excited when the doctor’s office called last week about the appointment. Finally to see someone who is an expert in treating ulcerative colitis and Crohn’s Disease – this is going to make a big difference for my health.

After an hour long appointment, I left feeling like I was floating on clouds. I was able to ask my questions. Learn some interesting information about new approaches to treating ulcerative colitis. And most importantly with the feeling that this young doctor really does know his stuff . He said, “my ulcerative colitis  and Crohn’s patients are very special to me. I’ll do all I can for you.” Wow!

So now I’m starting on a new medication, have a bunch of tests scheduled, and a real feeling that things will finally start to turn around. Interestingly, I expressed to my doctor that I felt I was doing pretty good. And he pointed out that I’m not yet 100 per cent and that really I can still be so much better… I’ve been happy to accept where I am because it is so much better than where I’ve been for so long, but this doctor reminded me that I don’t have to “settle” and that things can get back to the way they were.

Who would have thought that a day spent in two hospitals and paying crazy parking fees (getting a parking ticket doesn’t help…) – could turn out to be such a good day? Yep, can’t wait to be 42 and discover what the year holds.

 

Crushing It

In other years,  a title such as Crushing It would have likely indicated that I had successfully ripped my legs off, put myself in the pain cave, hit an all-time high on the wattage meeter or something to this effect…. that was then and this is now…

Now instead of such super-human feats of past years, Crushing It merely refers to the super-human crush I have on my bicycle. I’ve now got four rides into my legs and my rather sensitive bottom. I’ve never had so much fun on two wheels as I have during these four rides.

Nothing really stands out on these rides. The roads were familiar. The weather was sunny at times and windy at others. I didn’t go super fast – in fact I went super slow. I rode alone with the exception of 20 minutes with Marc (which never happens). But these rides still stand out as some of my top rides ever.

It is hard for me to explain what makes these rides so much better than rides I’ve done in Belgium, the Czech Republic, Las Vegas, Italy, and France. I guess it is because for so long I simply couldn’t ride.

Now I can ride. So I’m riding. I don’t have a training plan. I don’t have a schedule. I’m just riding. As fast/slow/hard/easy as I want to go. I realized yesterday that I fit on a bike – it just feels right. I had no idea how much I missed “fitting” – thanks bike – you’re the best.