A history of... shhhhhh.....crohn's. And, learning to accept.

Why does it seem like so many of my Crohns and ostomate friends have been getting sick lately? Or having unpleasant setbacks with their disease?

Is it something about the time of year? The stress of school, work, and family as we all get closer to the end of the semester and the holidays?

"I never make it through finals without having at least a little flare up", my friend Jacinta said. I was taken aback. Two or three anticipated flares, often landing her in the hospital, as the price of academia?! Seriously?

This was in 2003, when I was working full time as a Paramedic and living in a tiny Philadelphia appartment. She was my housemate, who also had Crohns. She was one of... no, scratch that. She was THE first person my own age who I met who had Crohn's Disease, or IBD at all for that matter. And, she was a stunningly beautiful, long legged, bubbly, athletic, Ivy-league lady! Maybe in the back of my mind I had always thought people with Crohns were hiding somewhere because they were too socially damaged or otherwise unpleasant to come out. And, who would talk about Crohn's anyway? Wasn't it something to be ashamed or embarrassed about?

It might seem strange that I had never previously met anyone with Crohn's, in all of my years as a child going to doctors appointments and all of my years in and out of hospitals from the age of about 8 until then. But, somehow, it's true. I was never offered the opportunity to talk about my illness, or connect with others who were experiencing the same fears, pain, and often isolation that I was - all on top of the struggle of surviving elementary, middle, and then high school!

My parents treated my illness as a burden, or as some sort of punishment from the universe for something that I should have done better in my childhood. They alternated between avoiding even saying the word "Crohn's", and shaming me for it, and sometimes oversharing details about my illness with friends and relatives in ways that were the exact opposite of supportive. But, for the most part, they defaulted to pretending that it was non-existant, something to be hidden away. During this time, there was no internet, then the internet was new and my family didn't have a computer, and then finally with computer and internet access I didn't even know that I might be able to find community or information online. There wasn't the same easy access to online community and resources that we have today. And, I'm not even all that old!

As the years went on and my disease worsened, with increasing failure of treatments, and hospitalizations tallying in the tens, my parents years of shame and denial left them clearly unprepared for the reality of having a critically ill pre-teen. At one point I was even threatened with something that made absolutely no sense to me at the time; that if I didn't get better/be a better patient/do whatever it was that they thought I should be doing at the time that I would be "pooping in a bag". That sounded pretty gross, and also like a sick and twisted threat. I remained mystified by this for years afterwards.

...

Back to Jacinta, my lovely Crohnie housemate in a slightly overcrowded West Philadelphia apartment.

She wasn't ashamed about her illness, or how it had effected her life. She was happy to talk openly about growing up and being diagnosed with Crohns, giving up salad for good, what past treatments with Humera were like, how a fuzzy blanket and a heating pad got her through chills during flare, and finally... about the time when she got sick in high school. She got really, really sick and ended up not being able to eat for months. She refused to be hospitalized and stay home from school, instead electing feeding by a nasogastric tube, which she inserted HERSELF! When she finally did end up in the hospital, after months of trying to go on with life despite her illness, she was in pretty bad shape and ended up having ileostomy surgery. At that point, she still stayed positive and adjusted to her new life. Around the kitchen table in Philly, she told funny stories about having to educate new resident physicians about her altered GI anatomy, and about botched bag changes.

I was simultaniously in awe of her, floored, and horrified. But, mostly in awe of her and fairly sure that I would never be able to be as accepting of my own IBD as she was, and definately wouldn't be able to adjust to living with an ileostomy if, God forbid (!), I ever had to.


Yet, somehow I have adjusted.

Sometimes I have a hard time staying positive, especially during weeks like this when I've spent more time in a hospial bed than my own. But, I do find that one of the things that helps me the most is connecting with other people who have Crohn's or an ostomy, and sharing my own experience. Maybe my experience will help somebody else adjust to having an ileostomy, but even if it doesn't acheive that specific aim, I hope that it at least helps remove Crohn's disease from somebodies list of things to be ashamed of or silent about.

And, just as important as connecting with other Crohnies and ostomates, is being comfortable enough with non-Crohnie friends to allow them into my life. Keeping it a secret means no hospital visits! And, as far as I'm concerned, friends and friendly faces make a hospital stay that much less boring, anxiety-making, and unpleasant. So, friends, if you are reading this, thanks so much for all of the support and cheer this week!

first hospital trip in a while

I just got home from the hospital after a four day stay. You guessed it, abdominal pain. But, in a whole new and unfamiliar way. On Monday night I started having sudden onset of searing pain just above and to the side of my ileostomy site. I watched it for a few hours as it got worse and worse. Finally, when chills set in four hours later, I decided it was time to go to the student health center (required before ER in order to appease the health plan gods). They heard my medical history and said, "We need to send you to the ER. We have to assume there is something seriously wrong."

So, I went to the ER at the huge Yale hospital and stayed there till 6am when they finally admitted me. It wasn't an altogether unpleasant ER stay, despite some nervousness about running into fellow PA or med students. One of the residents reviewed radiology problems with me for a good two hours, which was pretty cool. It was nice to be treated as a future colleague, and not just a patient. It's even different than being a Paramedic and getting sick. Suddenly, all the physicians and PA's want to teach me about everything that comes up in treatment - which is sometimes exhausting and sometimes a relief from thinking about how much pain I'm in!

If there is one thing that can really turn a hospital stay around, it is amazing friends. I have truly been bowled over by the kindness of my friends, housemates, and classmates this past week. I don't even know where to start, but I know I couldn't be a luckier guy.

A real post about thoughts on leaving the hospital, fragility, and outlook on life will be coming soon.

For now, I'm tired, and enjoying cutting my bracelets off! Then I'm going to bed. My own bed!

Winter begins with snowfall and December 1st

You know it's officially winter riding when there is snow on the ground, regardless of the actual calendar season.

Today marked the first riding day that I wished for neoprene shoe covers vs my fall windproof ones. And, handwarmers inside my gloves. Alas, I had neither on. So, I had to conjure the mental fire on my handlebars that one of the New Haven cycling legends swears by to keep him warm.

During the winter I tend to introvert, which becomes something pretty close to isolation at times. I start enjoying the grey skies, and the silence of the road, and my own company. This year in particular, the reprieve from racing and lack of challenge from others is welcome. I pushed hard into both road and track racing for a long March-September 2012 season.

I saw a few lone-wolf cyclists in local team colors, peddling in the oposite direction, chilling in their small ring, and looking like they were enjoying the grey day as much as I was. A nod of acknowledgment, and comraderie from a distance. But, no summer giddiness and doubling back mid-road to see what route I'm on and if you can join in for a few more miles.

Here are a few pictures of the grey Connecticut landscape. Yes, that is a hint of snow hiding in the photo behind my bike. And a local racer caught going the other direction.

Most climbing so far!

Today I completed a 67 mile ride that was among the hardest things I've ever done on two wheels. "Only 67 miles?! what's so hard about that!?", you are probably thinking.

The part about a total elevation gain of 6,900 feet (the elevation shown below is debatably accurate, although much higher). That is a ton of climbing. Six summits, to be precise, plus a handful of smaller climbs to keep things interesting.

And, I will say that I am actually thoroughly enjoying the fact that I got completely and totally beaten up by the elevation on this ride. While I know that I am not slow (I am sometimes frustrated by being the fastest person on a ride), I felt like a brand new rider again. It was like I was learning the true meaning of climbing, and seeing a mountain for the first time - both at once. Aaaannnnd... then I experienced what felt like total body failure at the end of summit 5 (with still about 1000 feet of climbing left to go on the ride back to New Haven.). Everything hurt, and every time the road pitched upwards even slightly my legs felt like bricks. The last long climb seemed to go on forever. A gap would start forming between me and the [notably all elite or pro level racers] group, and then I watched the formation of what felt like an abyss. At some point, one of the strongest riders doubled back for me and rode behind me, periodically launching me forward by a hand on the small of my back. By this point I was beyond cracked and beyond caring about the patheticness of such help. I was only thankful. Since getting back, I've been thinking about the incredible strength it would take to ride up a mountain AND periodically push a 123# weight. Pretty wild. At the time, I was in too much pain to think about anything but the top.

It's nice to be totally, completely and absolutely humbled. And, that I am.

No excuses about Crohn's or having an ileostomy, or nutritional deficits related to the prior. All of that is my back story, and certainly effects my stamina. But, the real determinants of strength and speed are time spent on the bike, sweat, pain, and the will to inflict more suffering on yourself. The only way to get stronger is to put in the effort. So, I'll consider this ride an investment.

Check it out:

Hey look! That's me in a track race!

Things have been busy here at Yale for the past month and a half, but I'm finally feeling settled in and am enjoying my program. I'm also really seriously enjoying the New Haven cycling scene. It is amazing - truly.

You know how you've read articles featuring things like local group rides that are FAST!, with townline sprints, and the local Tuesday Night Cup informal race? I always thought these were fiction or strictly metaphor. They exist here in New Haven and it is awesome. I'm totally enjoying getting my broken butt kicked up hills on a daily basis.

The Yale cycling team is also pretty rad. I finished out the track season last weekend at the Northeast Velodrome in NH, taking 5th in the 4k pursuit (fully lapping my Harvard opponent!), 4th in the points race, and 4th in the scratch race (got nipped by less than an inch at the line in the pack sprint for 3rd. Two guys were way off the front).

Track seems to be my thing, and I'm embracing it wholeheartedly! However, that doesn't mean I don't still need to do the majority of my training on the open roads.

Speaking of track. I found this video on youtube. This is my first track race on this coast, at the Kissena Velodrome in Queens, NYC. Apparently the guy who won the race (and took this helmet cam footage) was on my wheel for essentially the whole race until the end. Hmm...

The race starts at 2:00. The beginning is just announcements and warnings, "This is a huge field! Ride safely! You will be disqualified for passing on the left!"

Track Racing!

Very quick photo post and recap of the Trexlertown collegiate track race:

Note the change of cycling kit from Pitt to Yale!


I wasn't expecting to be in great form today given that I have had the flu for the past three days. However, I woke up this morning feeling less awful. So, that was a good start.

Speaking of starts, here's a neat photo series that one of the race organizers got of me getting set up for a 2km individual pursuit race:

Bracing for the gun! And, we're off! First pedal stroke is the hardest. I need to practice throwing my weight forward more forcefully.

Picking up speed, out of the saddle. But, not too fast, since I have to pace it for 6 laps.

In the scratch race (a simple-concept mass start type race where the first person over the line at the end wins), I managed to get away with one other guy in a break off the front with 6 laps to go. Sadly, I got caught by the pack and trounced with one to go, taking 6th place - just outside of points. It's always easier after the fact to think that I could have done better, forced myself to push through more hurt. But, it's something to build on! Hurt more and don't get caught!

An experienced track racer said of it, "You can't win unless you are willing to risk losing".

All in all, it was a fun day. I learned things, saw some cool dudes I know from the collegiate road season, and am looking forward to more collegiate track racing next weekend in New Hampshire.

Mapletown Road Race

At this point, I've figured out how to do well at a criterium race (short flat circuit race, fast and technical cornering), but still find myself in a world of hurt and dispair when it comes to road races. It's so easy to start beating myself up mentally when I'm in agony on a climb and feel myself struggling to hang on. It's easy to forget that half of the other guys are probably in the same boat, and just pushing through. And, all pain in temporary.

Cycling takes mental fortitude, in addition to physical strength. And, different types of races take different types of mental preparation and strength. Road races take an ability to push through pain for much longer than criterium races, which have become my "comfort zone" of racing. In many ways I think that having a chronic illness has better prepared me to handle the pain of competitive cycling; those of us with IBD know what pain really means. But, in other ways, perhaps this history makes it more difficult to volunteer for a world of hurt, no matter how relatively short a few hours may be. It is both a glorious and terrible feeling to choose to let the pedals stop spinning and make the pain stop before the summit - a choice that we are never given when facing illness or surgery, and one that is soon followed by regret in a race. And, because of Crohns and my relative gutlessness, pushing onwards means that much more to me. I can face whatever agony this race brings, and I will finish it! And, within a few minutes of finishing, none of the suffering will seem so bad. In fact, I'll remember it as a good time.

Few things worth doing come easy. And, there is only one way to get better at road racing: do more of it!

Also, I need to do more climbing more often, as evidenced by my pain on the climbs of this course. This photo is of the first summit, when the pack had already broken up considerably. You can see the USA Cycling official on the motorcycle in the back bringing up the last of the real pack - it is possible to fall behind the scooter, and there are few things more demoralizing. When you hear that engine, you force yourself to pick up the pace!

One major success of this race was hydration! I brought 3 bottles with extra concentrated gatorade plus Elete electrolyte add in - 2 in the bottle cages and one in my back pocket - and needed every bit of it. Three bottles might seem a bit excessive for a two hour road race, but with less intestines come impaired hydration. If the race had been longer I would have desperately needed a feedzone handup!

Goals for next time: More watts, less weight, and less negative self-talk. That's the magic recipe. No matter where I place in the finish, it is about achieving my personal best, beating the medical odds, and proving that I can still be competitive in this sport despite my added challenges.