Learning To See

It’s been six months since my panproctocolectomy completion surgery. Geez, that is a mouthful isn’t it?

When I saw my surgeon in May at about the half-way point of the first critical phase of healing, he told me it would take “a good six months until you are fully healed and feel normal”.

Well, I’m ready for it. I’m ready for feeling normal. Any day now, I guess.

I was feeling really great physically – riding a lot, starting to find some strength and endurance, and generally starting to feel like myself.

And then I wasn’t. It kind of snuck up on me, but seemingly overnight I couldn’t walk up the stairs without getting winded, I couldn’t do back-to-back bike rides, or go for a long steady mountain bike ride.

I was tired. All of the time. I still am.

So now I’m riding when I feel like it and when the conditions are pleasant. This is hard. I feel guilty for not being out on my bike right now on this unseasonably warm October day. But, I can’t – I’m tired.

Or am I? Yes, I’m starting to wonder if this is all in my head… Marc assures me that it’s not in my head. But sometimes it’s hard to know. I keep thinking that tomorrow I’ll wake up and feel like myself again.

It has after all been six months.

I did see my gastro doctor today. I’ve done more blood work and he’s put in a referral to a liver specialist for that pesky liver disease that is lurking in my chaotic body. Until I hear back, I wait – status quo.

Keep riding when I can. Keep lining up at ‘cross races. Keep trying my hardest. Keep my eyes open and looking forward.

Seeing the possibility rather than getting frustrated with what isn’t possible. It’s not easy. I’m not that great at it. But, there is no other option.

 

The Tides of Perspective

IMG_1785

This evening while walking home from a Vinyasa yoga class, I flashed back to a few months ago when I could barely walk 500 meters. I thought about how much had changed in just four months – how much stronger and fitter I’d become.

And then I thought back to a year ago, just a few days after the opening weekend of the 2017 – 2018 cyclocross season. We had been in Rochester, N.Y. for the weekend where I had placed fourth on day one (with a call-up of 21 out of 22 riders) and the next day placed mid-pack due to some tight and anxious riding. All in all, a successful comeback weekend after the 2016 – 2017 season when I was recovering from surgery.

I remembered how stressed I had been leading into that first 2017 race weekend. A bundle of anxiety, hope, and fear. I managed to work myself up into my traditional pre-race ball of stress, but got through it with real hope for the rest of the season. I chased this weekend with a good race in Rigaud, PQ and some very good races in the local Ottawa series. I had high hopes of getting close to or on the podium at cyclocross nationals and then racing well in Mol, Belgium.

Well, these last two didn’t happen. I wasn’t technically prepared for the course in Sherbrooke, PQ and my body slowly but surely fought back with a hard and painful reminder that even without a colon, ulcerative colitis would aways be with me.

But the past is the past.  So why write about this now? Well, I think it’s the perfect time to write and think about perspective since I just finished racing in the opening weekend of the 2018 – 2019 cyclocross season in Rochester, N.Y. This past weekend there were over 40 women racing in the 1/2/3/4/5 category  – this is awesome.

IMG_1795

The run-up from the river. Thank goodness for sturdy course tape.

Thanks to my decent season last year, I had a second row call-up on both Saturday and Sunday. However, I knew going in that the virtues of this second row call-up would be very short lived.

Sure, it’s been four months since my recent surgery – but it takes a long time to rebuild and heal. This second go-round has been much harder. My body is pushing back hard and is not giving my any breaks. It seems like I take two steps back for every one step forward.

All this to say, I did not have any high hopes for the 2018 Rochester cyclocross race weekend. On Saturday I was last. On Sunday I was second last. I didn’t have any mechanicals, crashes, or other incidents on course that I can point to that contributed to these results.

I’m simply not where I was last year, two years ago, or even three years ago.

Is this hard to take? Heck yes, it’s really hard to take. The negative pre-race talk from fellow racers and the brutal heckling on the stairs (one guy told me to go faster next lap), doesn’t help but whatever, people sometimes aren’t their best selves on race day.

It’s hard to race at the very back of the race. It’s hard on the ego. It’s hard because I know what I was capable of. It’s hard because I don’t know if  I’ll ever get back to where I was. It’s hard because I just don’t know what my body can do anymore.

But, through it all, I’m so happy I raced. When I crossed that finish line on Saturday I was crying. I was crying tears of relief, joy, and success. I did it. I raced – I didn’t think I’d ever race again. And I did it.

On Sunday, I wasn’t convinced I could line up again on the second row and have a repeat of Saturday. But Marc reminded me that Sunday could be my last race of the season and that I needed to remember how emotional I was on Saturday after racing.

So, I did it again. I lined up on Sunday and I raced. I had a strategy this time. Go as hard as I could on the open power sections and ride the technical sections calmly and in control. I focused on looking forward, clean barriers, using the entire width of the course, and on keeping constant pedal pressure. So this is what I did. I stayed positive the entire race and was very happy to not be lapped by the race leader.

I did what I could with what I had on the weekend. This is all any of us can do on any day of the week when faced with whatever challenge we have in front of us. To quote a smart person I know, “All you can do is all you can do”.

Believe me, I really wish I didn’t have so many lessons in perspective and making the best of my situation. But I do. So it’s up to me to take these doses of perspective and use them to my advantage.

One day in the future I’ll look back on the September 8/9 weekend of 2018 and realize how far I’ve come.

IMG_1783

I think this was just before entering the wooded technical section. 

A huge thanks to Josée, Marc, Steve, Ian, Matt, Todd, and everyone else who cheered me on. It’s amazing what a lift it is to hear your name being called when out on course doing the racing thing. A big thanks to Josée for the photos and for handing me my bottle on Saturday when I managed to mangle my bottle cage on a wooden stake. 

It was a great weekend. Catching-up with long-time cyclocross friends, being outside all day, cheering on the other racers, and most importantly seeing friends have great successes on their bikes on race day. A big shout-out to Marc for his third place on Sunday and to Steve for his double second places.

 

This, That, and The Other Thing

It’s been a while. To be honest, I’ve written a lot of blog posts in my head while out riding or just puttering around the house – but none of these made it to the big screen. Sometimes, the words sound so much better and make so much more sense in my head and when I get ready to write, well, I lose my nerve or decide to keep things to myself.

This is normal I suppose for any creative person. Yes, I consider myself to be a creative person. I don’t create anything that you can hold, wear, or put on your mantel (well, there is the odd pottery project – new class starting next week). However, I do take the 26 letters of the alphabet and spend my days putting them together in unique formats.

This

It’s interesting to think about what I do all day and how this is or isn’t attached to my identity. I’m pretty lucky to revolve in circles where what I do all day doesn’t really impact how people judge me. I’m one of the lucky ones. Most of you don’t have it so easy. When people do ask me what I do, I say “I’m a writer“. This is a vague answer that let’s people make whatever judgement they want about my professional life.

It’s taken me a long time to get to this place. I guess this is what happens with age or simply just fatigue. I realized that most people are so self-consumed that they really don’t care what I do or don’t do all day. As for me, sure, your career is interesting but I know that for most of you – you’d rather be doing something else – so why bother spending much time weighing the value or not of your profession. (And for the record, every profession, job, career is valuable.)

Instead, I care about you as a person. What you do before and after work. What you’re thinking about when you’re at work. How you kick back and live life.

That

August is over. This doesn’t mean the end of summer. Just because Starbucks has rolled out it’s dreadful Pumpkin Spice Latte much too early, the Halloween stuff is in the stores, and the shops are peddling sweaters and mittens – doesn’t mean that summer is over.

The last time I checked, we’re living in a progressively warmer climate. I try not to worry about climate change too much – but frankly it’s impossible to recognize that we humans are making some big errors right now – today – that are having huge ramifications.

I urge you to read this incredible article from the NY Times about climate change. You can also listen to a podcast about climate change – if you don’t have time to read (gosh, I do hope you have time to read…). Hopefully it will make you stop and think about your world and how you live in it.

Sorry, I went off-course here with the climate change thing. So yeah, summer isn’t over. Keep doing the fun summer stuff as long as possible. In the summer, people are happier – we smile more, we’re outside more, we’re just generally a little bit closer to being our best selves. So why not keep these good people vibes going for as long as possible?

The Other Thing

So, it’s been around four months since my surgery. Somewhere along the way, I stopped counting the weeks since April 30. I don’t know exactly when it happened, but one day I realized I had no idea where I was in my post-op calendar.

This past month has probably been the first time since I’ve felt pretty normal and healed. There are still lots of lingering internal issues from the surgery. But I’m working with an osteopath and with Sarah Zahab at Continuum Fitness to fix all the tightness, muscle loss, and internal scarring.

I’ve been doing a lot of riding. I’m still not back to formal structured training. Instead I’m just riding at whatever pace on whichever bike for however long I want. This has been a real change for me. For so long I’ve been in a structured training program. There are times when I miss the structure but I also relish the freedom of being able to do what I want on the bike.

The big trade-off with this approach is fitness. I’m not about to go out and do intervals on my own. I’ve noticed that I lack the ability to recover from hard efforts or to go really deep. This is okay. 2018 is about getting back to feeling whole again. Then in 2019 I can decide what I want to do.

I’ve been spending much more time on my mountain bike than in previous years. I’m so loving it. I think I’m addicted to riding at Larose Forest. It’s the place I go when I need to clear my head, get back to nature, and just feel like a bike rider again. I’m riding my ‘cross bike on the road and I think riding the ‘cross gearing (42/38) has been useful in making it easier for me to do long rides.

The ‘cross season starts next week. I am going to race. I don’t know how it’s going to go. Well, I do know how it will go. I’ve got experience with racing a season after surgery. It’s going to be hard (but isn’t it always?) and it’s going to be fun. I have zero expectations or self-imposed pressure. I won’t do many double race weekends – just Rochester and the Camp Fortune races. At this point, I’m not sure if I’ll race at the Canadian Cyclocross Nationals in Peterborough or at the Pan Am Masters Championships in Milton. These will be week of and even day of decisions. It all depends on how I’m feeling.

I’ve noticed that I get fatigued really quickly lately. Gone are the days of back-to-back long steady rides. If I want to do a long ride on Saturday and a moderate length ride on Sunday, I have to take it really easy on the Friday and Thursday before. It also takes me a solid day to recover from a good hard MTB ride. This is new for me. I used to be able to ride 6/7 of days and really not want to do a recovery ride on the seventh day.

It will come. I just have to give myself time. After all, like you, I’m only human. There is only so much I or you can do.

I stumbled on this quote today thanks to Austin Kleon’s newsletter and I think it’s a good way to end this post and get ready for the days ahead:

Finish every day and be done with it… You have done what you could; some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it well and serenely, and with too high a spirit to be cumbered with your old nonsense.  Rapha Waldo Emerson

#crossiscoming

First off, I kinda sorta apologize for using a hash tag in my title. But, you have to admit, it’s a catchy title. It got you reading….

So #crossreallyiscoming – what are you going to do? With local ‘cross calendars getting updated and everyone planning weekend cyclocross get-aways, it seems like the Internet is abuzz with how to get ready for cyclocross season.

This getting ready for cyclocross season is an interesting concept. IMO, getting ready for cyclocross season means something different for every person.

Serious cyclocross racers have been thinking about and training for cyclocross well before August 1st. Serious road racers and mountain bikers are likely looking at cyclocross as great way to keep their motivation and fitness going for a while.

And then there’s the rest of us. The people who like to ride their bikes and enter in races and other bike events that sound fun. This doesn’t mean you’re not taking cyclocross seriously, but you’re not putting life on hold for cyclocross training and fretting over the exact tire/rim combination for one crazy muddy race or super sandy race (which unless you’re in Belgium likely isn’t on your radar).

This is where I’m at now. I think it’s a great place to be. It means that I have a race or two to look forward to every weekend from September to the end of November. It means that I get to hang out with my friends and do a bit of traveling now and then. It is a great way to bridge the summer riding season through to the winter fat biking (or skiing if that’s your thing) season.

So as I sit here today and think about the cyclocross season and I ask myself – “what should I be doing to get ready for cyclocross season?“, my answer is very simple – I need to ride my bike.

Yes, specific intervals might help. But likely since I haven’t done any formal training or focused cyclocross training all summer, intervals aren’t going to help me much now. I just need to get out and ride my bike.

I need to keep going for long rides, short rides, and in-between rides. I need to go a little bit harder sometimes or sprint up a short hill sometimes. I need to get out on my ‘cross bike in the woods and practice turning, descending, riding in a straight line, and other fun stuff. I need to practice barrier technique and bunny hopping. I need to practice shouldering and running with the bike. I need to do so much.

See what has happened here? By just thinking about the fun weekends ahead when I get to line up, race, tell stories after the race, and hang out with my friends, I’ve created a long list of all the things I need to do to have fun. Hmm, there is something wrong with this picture.

So, while you’re sitting here thinking about the local cyclocross season or about traveling to a race that you heard is pretty fun and has a cool vibe, don’t stress about your training, your cyclocross skills, or your tire/rim setup.

Instead put on your kit, get on your bike, and go for a ride. Suddenly, you’ll feel so much better about your cyclocross season because you’re doing what you need to do – you’re riding your bike.

When you get back from your ride and see on Strava that someone has been out doing 20/30’s or 30/30’s or whatever/whatever’s – don’t stress. Remind yourself that you’ve just been out for a really great bike ride and you’re excited about ‘cross season.

Later when you check out Instagram and you see someone posting about their latest tubeless tires or the hot new tubulars, don’t stress because you’re on clinchers or because you don’t really know anything about tire pressure. Remember why you race cyclocross and think about that awesome ride you have planned for tomorrow.

When you’re wasting time on Facebook at work and see that someone is out running in the sand with a bike on their shoulder, don’t stress because you know you’re not racing at Mol, Belgium or Koksijde, Belgium or any other race that features considerable amounts of sand running. Instead think about the ride you have planned with your friends this weekend and the stories you’ll be able to tell afterwards.

Cause really, #crossiscoming is really just about getting outside in the fall and riding your bike around a course. All the bits in between are just picky little details. Enjoy the bike riding part and don’t stress about the details, it’s the details that tend to take the fun out of the bike riding part (trust me, I’m an expert on this part).

So yeah, #crossiscoming and it really is #somuchfun but don’t #besilly and #takethefunoutofcross with getting all #crazyserious. Ask yourself why you race cyclocross and then do what makes sense for you and your answer.

 

The Latest News

Long time no chat! Life has gotten busy and I suppose I thought I really didn’t have much of interest to tell you about. I’m still not sure if I’ve got any late breaking news or headline grabbing content, but you never know what will come out of my fingertips.

When I listen to podcasts with authors who say things like “the character just appeared to me” or the “the characters really spoke to me”, I often think, “what a load of bunk”. But, here I sit with no idea of what I’m going to write about and then the words just start flowing out of my fingers – so maybe these authors do know what they’re babbling about.

So, what is going on? Well, I’m back to regular good old life and I couldn’t be happier about it. I’ve been riding my bike pretty regularly now for a couple of weeks.

I have to admit the first week back was hard. Really hard. My legs didn’t want to pedal. My cadence was gone. My muscles couldn’t remember what to do. My triceps ached something fierce. I was panting on false flats. Yeah, I was kind of a hot mess on the bike.

I knew this would happen but deep down I secretly hoped that through some miracle, I could get back on the bike and just roll along where I left off on April 29th. Nope. The human body, at least a 46 year old human body that’s been stretched, pulled, cut open, and wrung out more times than I care to think about in the last nine years, doesn’t just bounce back.

This is okay. The good news is I’ve been here before so I know it’s all part of the process. I’ve had some awesome rides these last couple of weeks. It’s been great to ride with so many different people. I’ve barely looked at my power meter and just focused on the person next to me and trying to remember not to talk too much.

We’re in full summer mode here. Which, I suppose for us doesn’t really mean much is different except, I have to wear pants and hoodies indoors because of the air conditioning. Question: does anyone else get super cold after eating cold food or drinking a cold drink? I do and it can be super annoying – I have to bundle up before eating ice cream or having an ice cold pop.

Hmm, what else is going on? Well, I finally got to see Bryan Adams. I’ve wanted to see him since I was a wee young teenager. It was as great as I knew it would be. We also went to see The Dave Matthews Band. Wow, what a night. There is nothing better than seeing a band full of real musicians. Dave is a real character and he let his personality fly on  stage. It wasn’t an easy next day for Marc however, with some post-concussion symptoms rearing up. Fortunately, Marc is feeling much better and back to his regular self.

Let’s see what else is happening? Nothing really. Lots of reading, Tour de France and Giro Rosa watching, podcast listening, and general loafing around. It’s a pretty good life really.

My brain is slowly but surely drifting towards the sudden onset of cyclocross season. This time last year I’d already put in a few solid months of specific cyclocross drills and training sessions. Not so much this year. But, hopefully in the next couple of weeks I can get back out on the trails and do some dirt riding.

New and exciting for this week are: mountain biking on the weekend, planned first long ride of 2018, and a return to yoga classes that aren’t Yin yoga.

I’m nervous about all three.

But, the way I look at it is – I have to cross these hurdles sooner or later – so I might as well do it now. The problem with later is I never know when that will be and it might never come.

 

Light In The Tunnel

I’ve been living in an eight-week tunnel. Counting down the weeks and days until eight weeks would be up. My panproctocolectomy completion surgery a.k.a butt/rectum removal was on April 30.

Eight weeks from April 30 is June 25. Not long now.

I was told from the beginning that I would need an eight-week recovery period from this surgery and then to expect it to take me another six months to really feel like myself again. Neither of these numbers were a shock to me.

In 2016 when I had my colon removed, I was also deep inside the eight-week recovery tunnel. The six months to fully recover makes sense since I’ve had two major surgeries within 20 months.

This go-round has been a long eight weeks. The recovery feels harder and longer than it did in 2016. However, like all really tough stuff in life, we tend to forget the really bad bits, so maybe 2016 was as equally challenging.

I do know that recovering from having my butt removed was extra spicy thanks to the inconvenience of not being able to sit much. The butt is a tender and protected area for most of us. So imagine what it’s like to have the butt that you’ve known for a long time (46 years) be sliced, diced, stretched, and then sewn together with crazy industrial stitches. Yeah, things get extra sensitive.

I’ve now graduated from needing a special cushion to sitting on hard chairs and on the floor. It does make me a bit nervous to do so, but I think this will last for a while.

The next step is to get my butt on a bike seat. This will happen on June 25th – the eight week date. I’m going to start with my city bike – it has a big cushy saddle and the nature of the bike limits me from overexerting myself. The deep buried hope inside me is that on June 30th I can get out for a ride on my trusty red bike and then within a month I’m back to riding for up to four hours.

Now, don’t gasp and shudder and get ready to post a comment telling me to take it easy or to go slow. This is exactly what I’ve been doing for the last eight weeks. On May 23rd, my surgeons gave me the okay to return to yoga (I waited two weeks), to give up the cushion (I still bring it with me in the car), and to start pushing my limits (I haven’t really, apart from standing a bit too long a few days). So yeah, I’ve been waiting.

I’ve been doing special core exercises to get my abdominal muscles working again and I spend a lot of time clenching my butt muscles to try to get them active again. Really, you have no idea how critical your butt muscles are when you sit down to pee until your butt has been sliced and diced. Sitting to pee was a big deal around here at 26 Tamarack Place, admittedly I still use the hover technique but I’m getting there.

So yeah, I’m looking forward to June 25th. It’s hard to be a cyclist when you can’t cycle. My body doesn’t feel or look the same. I don’t feel the same. I harbour deep fears that I might never get back to being the same as I was.

It’s likely this deep fear that has encouraged my interest in reading books and watching documentaries about people who have conquered some kind of insurmountable challenge and have come out whole. Knowing that there are other people who have recovered from big surgeries, crazy injuries, or even just done the unthinkable, tells me that I just might be able to get back to feeling like myself.

I’ve got big plans for 2019. Did you notice that? I don’t have big plans for 2018. This is the year of finding myself again. Of hopefully living a life with less sick days and more healthy days. As a chronically ill person, I know I can’t expect the sick days to end but I do hope they are reduced or at least somewhat less harsh. I need to figure out this new body of mine and learn what it needs to keep feeling well.

My brother sent me a pendant for my birthday and it really couldn’t have come at a better time in my life. I think of the phrase multiple times a day:

She believed she could so she did

World IBD Day is May 19

World IBD Day is happening on May 19.

World IBD Day takes place on 19 May each year and unites people worldwide in their fight against Crohn’s disease and ulcerative colitis, known as inflammatory bowel diseases.

Unfortunately, while IBD impacts an estimated 5 million people living all over the world, IBD remains largely misunderstood and lacks global awareness.

I have IBD. I have ulcerative colitis. I was diagnosed in 2009, but had lived with many strange symptoms and illnesses prior to this that are likely a result of this auto-immune disease.

Rather than answer the standard questions about IBD, Crohn’s disease, and ulcerative colitis, I thought I’d address some of the questions and comments I’ve heard from friends, strangers, and medical practitioners over the past nine years.

Use these links to learn the facts on IBD, Crohn’s disease, and ulcerative colitis:

You don’t look sick.

I hear this one all the time. I’ve heard from well-meaning people. I’ve heard it from doctors and nurse when I’ve been in hospital not even able to eat jello. Here’s the thing – I can’t help the way I look. I look younger than my years. I look good. I have good skin colour. I look fit. This is not my fault. This is simply down to genetics. It’s important to remember an old adage: Never judge a book by its cover. Same goes for me and others like me.

Well, at least you don’t have cancer.

Hmm, this is one of my favourites. I really never know what to say to this. Yes, cancer is horrible. But so is IBD and ulcerative colitis. Just like people can die from cancer – I can die from ulcerative colitis.

You can’t die from ulcerative colitis.

Yes, I can die from ulcerative colitis. I have a compromised immune system. When I catch a cold or flu, it can turn into pneumonia very easily. My ability to fight infection is compromised. I’ve taken so many noxious drugs over the years that have damaged my body’s ability to fight off viruses and bacteria.

My colon and rectum weren’t removed for fun. They were removed because I had no choice. There are no more drugs for me to take. By not having the surgery, I would have died from a perforated bowel, sepsis, or colon cancer.

People do die from ulcerative colitis. Even though I no longer have a colon and rectum, I still have ulcerative colitis. I will never be free from this disease.

Should you be eating or drinking that?

Hmm, how would you feel if I asked you the same question? Yes, I’m going to drink the Diet Coke or eat the chocolate cake. I’m human and like you, I find comfort in food. You don’t know what it’s like to have ulcerative colitis – so please do not judge me when you see me drinking a Starbucks drink or eating a hamburger. Just as you wouldn’t eat anything that you know will make you sick, the same goes for me.

There are days when I feel so terrible that the only comfort and feeling of normalcy I can find is that bowl of cereal or grilled cheese sandwich.

What you need to do is switch to a vegan or keto or paleo or low-carb or high-carb or high-protein or raw or gluten-free or dairy-free or liquid or low-protein or organic or all junk food diet.

If there was a diet that could cure me, I would follow it. Believe me, I’ve tried every diet there is. It doesn’t matter what I eat or drink. The ulcerative colitis is always there. Gluten-free. Dairy-free. Raw smoothies. Juice fast. SCD. Vegan. You name it, I’ve tried it. Most of the time I felt worse on these diets.

But, you know someone who had stomach problems and cut out gluten and meat – and now they feel so much better. Hmm, yeah, well everyone is unique. What works for one person, isn’t going to work for someone else. This is what makes auto-immune diseases like ulcerative colitis so hard to diagnose, treat, and cure. Each and every body is different.

If you’re so sick, how can you ride your bike every day?

Yes, for most of the past nine years I’ve been able to ride and race my bike. Heck, I even raced at the World Cyclocross Championships in Tabor, Czech Republic in 2010. It can seem confusing – how can a sick person still do all this exercise?

What you don’t see are the times before and after my training rides and races. The times when I couldn’t even make it to the road without shitting blood and mucus. You don’t see the roadside stops and frantic pulling off of my jersey and bib shorts in an effort not to crap myself. You don’t see me doing nothing after my ride – me lying on the couch with cramps and fear. You don’t see the missed training rides, the DNFs, and the poor results. You don’t notice the sub-par performances. You don’t remember the week-long hospital stay in Belgium in 2010 or the 12-day hospital stay here in Ottawa in 2012. You don’t see me taking steroids and other noxious drugs in an effort to find some energy and relief. You don’t see my small intestines sticking out of my abdomen. You don’t see the staples and stitches. You don’t see the scars. You don’t see me struggling to sit for more than 30 minutes. You don’t see me being afraid to eat food. You don’t see me wishing it would all end. You don’t see me giving up.

You don’t see any of this because I can’t allow this. I can’t allow ulcerative colitis to break me. So I ride my bike. So I race my bike. So I work. So I go out and live a normal healthy life. I have to do this. I have to show others living with ulcerative colitis, that it will not break them. I rely on others like me to show me that the days can and will get better. And  I have to do the same.

Now that you’ve had your colon and rectum removed, you must be cured.

There is no cure for ulcerative colitis. Yes, the organs impacted by ulcerative colitis are now gone. However, there is a strong chance I’ll develop Crohn’s disease. Ulcerative colitis has gifted me with another disease called primary sclerosing cholangitis. This disease impacts my liver and liver bile ducts. I also have the genetic marker for an auto-immune disease that can cause my vertebrae to be fused, leading to paralyzation.

The thing about auto-immune disease that most people don’t understand is that you’re never free. My immune system is in overdrive and eventually some other part of me will be attacked.  And no, there is nothing I can do to prevent this from happening.

Can’t you just take some drugs?

I did that. I’ve taken every drug available to me (except one, which my gastro doctor is holding back, in case I develop Crohn’s disease). I’ve taken every kind of suppository and enema. I’ve taken more steroids than I care to remember. I’ve taken noxious IV drugs called biologics. I’ve taken drugs that suppress my immune system. I’ve sat in my bathroom and injected drugs into my legs. I’ve taken it all.

Some of these drugs worked for a short time. And then my super smart and crafty immune system outsmarted these drugs. Or the drugs made me so ill that my white blood cell count was nearly wiped out. Or the drugs made me so anemic that I had to have weekly IV iron infusions.

Yes, there are some people who respond really well to a drug and manage to stay in remission. But, I’m not one of these people.

Well, I have an upset stomach sometimes and I really can’t digest corn. So I know what you’re dealing with.

Hmm, talk to me when you are going to the bathroom over 40 times a day. Talk to me when you shit blood and mucus every single time. Talk to me when you’ve crapped your pants in the grocery store. Talk to me when you’ve had to wear adult diapers. Talk to me when you’re dry heaving on the toilet and can’t even drink water. Talk to me when you lose 20 lbs in one week. Talk to me when you can’t leave your house because you’re afraid you might crap blood and mucus. Talk to me when you can’t digest jello.

Maybe it’s all in your head.

Yeah, you’re right. I made this up because I wanted the extra attention. I’m imagining everything. I wanted to have two major surgeries. I want to have a pouch attached to my abdomen.

If you’re so sick, shouldn’t you be really skinny and pale?

If you  go to the gym every day shouldn’t you be ripped and super fit? If you go to yoga, shouldn’t you be super flexible? If you eat such a healthy diet, shouldn’t you have the perfect body?

I guess you must have done something to cause the ulcerative colitis.

Nope. I didn’t do anything to cause this. I likely showed the first signs of this auto-immune disease when I was a teeny tiny baby. I can promise you there was nothing I did to cause this. In fact, I follow all the healthy lifestyle rules – exercise regularly, eat a balanced diet, don’t smoke, etc. And I still got sick.

Now, I have two requests for you:

To raise awareness of IBD – please share this post with your social network, friends, colleagues, and strangers.

To help the smart doctors and researchers find better treatments for IBD – please support the Crohn’s and Colitis Foundation of Canada. My friend Marie-Josée Lafleur is raising money for the Crohn’s and Colitis Foundation of Canada via the organization’s annual fundraiser – The Gutsy Walk. Please donate and support all of us living with IBD.