Laugh & a Half

It seemed like a good idea the way that all things seem like a good idea at first. I told my Mom, and this was her exact reaction, “What? You’re going to run a half-marathon?” My Mom laughing at me should have been - for a normal person - a road-sign to turn around, to rethink the plan. But no, instead I smiled and said, “Yes!”

But this story doesn’t really begin with me. It begins with an email. I met my very dear friend Taylor through The Gutsy Generation blog. Without fail, we would text or email daily - but we had never met in person. We were enthusiastic to meet in person (I know, it sounds like a cheesy romantic comedy, but stay with me), but it seem idealistic and near impossible between our school schedules and the geographical distance. But - if there’s a take-away message to this blog post - never, under any circumstance, underestimate two gutsy girls.

And so, one day in June, Taylor and I decided to run the Niagara Falls International Half-Marathon. Crazy? Yes. Gutsy? Certainly. We were both runners already and it was a fantastic excuse to meet in person. The preparation got underway with the creation of a ‘GUTSY MARATHON MIX’ (yes, in all caps!) and the continual sharing of songs to be vetted for the playlist. I booked my flights - it was all happening for real.

I’m not an especially athletic individual, but in the last few months since my surgery in January, I’ve hiked Machu Picchu and completed a sprint triathlon, so it only seemed right to continue on in my crazed athletic quest. I had told several people about the race, including my roommates who made the most adorable signs for me around our apartment. 

Early Thursday morning, I boarded a plane and met my very good friend in the flesh. And it was as if we’d always known one another. We continued to find little things that fueled our theory that we’re the same person (e.g. we use the same toothpaste, go to schools with the same initials, etc) - we might have become friends because of our IBD, but we remained friends because of who we are as people.

The half-marathon was not for IBD awareness, but that didn’t deter us. We made shirts that had our last names on the back, our year of diagnosis, and then ‘Colonless 1’ and ‘Colonless 2’ on the sleeves. In a word, we were psyched. Morning found us quite early on Sunday, and we gathered in the kitchen, making our marathon breakfast, grinning sheepishly at each other and trying to imagine completing the 21 km course. 

The day was perfect - perfect weather, perfect scenery, perfect. The course followed the water and with the changing leaves, it was a beautiful (albeit very long) Sunday run. People were cheering, holding water on the side of the course, there was even a little boy with his hand out for high-fives (of course I stopped and had to restrain myself from asking his parents to take a picture with me). It was just me and my iPod and the bounce of my braid against my back as I ran. Just open road and sunshine and a very big, but attainable, challenge ahead of me. I began the race to “We Are Never Ever Getting Back Together”, my ostomy anthem, and was ecstatic to be able to listen to my gutsy marathon mix during the race. There were moments when it was hard and my feet were sore, moments when I tried to drink the water while running and instead doused myself in it, and moments when the sound of the crowds cheering and the cow-bells ringing could only make me feel so happy to be where I was. 

I felt this exact way in Peru and during the sprint triathlon - you look forward to the finish line so much because there’s a sense of accomplishment and awe, but those last few feet when you can see it, you want to turn around and do it all again. I sprinted the last 100 meters or so, crossed the finish line, which was amazingly at Niagara Falls, and was given a pro-style aluminum-like cape and a medal. I. Had. Done. It.

Now to get all philosophical on you: In life, and especially life with IBD, there are no guarantees. There are ups and downs, times when you feel awesome and times when you’d prefer to pull the covers over your head and pretend the world wasn’t waiting. Taylor and I had a mantra the entire weekend leading up to the race, “Hell or high water”. We were both sick or injured in some degree, but were determined and completely obstinate - we were running the race and nothing could stop us. 

Hell or high water, people. Hell or high water.

Jennie

Guest Post: Marc's Story

We are pleased to present the next post in our Guest Post series by the wonderful Marc from GutInspired! We hope you enjoy his post as much as we do!
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Dear Ileocecal Valve,

It's been almost 5 years now, and every day I still miss you, whether I think about you or not. I'm really sorry that I didn't get to know about you better before you were gone. You did so much for me and I never really appreciated you until it was too late. You were always there for me, the unsung hero of my ileum, the gateway to the colon, the bile salt barrier of the bowel, until the day I agreed to let a surgeon in and take what bowel he deemed irreparable. Damaged. Diseased.

Sadly, that included you, dear valve. Even then I didn't know what you were. It wouldn't be until weeks later, when I was healing and expecting a certain pre-disease quality of life to return, that I would ask my nurse why I was so... Loose in the caboose... Constantly Russian, if you catch my drift. That was when she would tell me about you, about the role you played in motility and preventing bile salts from upsetting the colon. That was when I would be forced to face my possibly worst misconception about the outcome of surgery, and when I would wish I had known about you sooner. If anyone mentioned you before surgery I don't remember. I doubt it. I think I understand why though: compared to the prospect of waking up with a stoma, the loss of you was probably at the back of the doctors' and nurses' mind. Losing my ileocecal valve was probably in a best-case scenario for them, and I don't know what I would have done differently had I even known about you beforehand. I sometimes imagine I would've asked the surgeon to consider keeping you if possible, but I don’t believe that would have ever worked. You were just in the wrong place at the wrong time. You had to go, and I miss you terribly, because it seems like the only thing keeping me from being more "normal" now is the lack of you in my life. You really knew how to just slow things down for me. I sometimes feel guilty about it; I could have done more to prevent the need for surgery, to avoid it maybe. Then none of this would even be a problem.

But what's done is done. I probably shouldn't be so regretful, really. In fact I should be thankful. I may have lost you, but I could have lost more. I mean, I lost my appendix too, but that's cool, it wasn't doing much anyway. I lost almost a meter of bowel along with you, and I sometimes wish I could have some of that back too, so maybe my iron wouldn't be so low all the time. I am once in an odd while kind of upset that my "quality of life" hasn't returned to what I thought it would be, and instead I've been forced to accept a new standard as my own. I think that makes me upset mostly because I thought it was possible for me. It sucks to be told there's nothing to be done but to get used to it, and take more pills. I was aiming to be off of pills by now.

Such is life! It could be worse. I may not be off all the medications, and I may have switched out pills to deal with those bile salts you so effectively kept out of my colon before, but I'm better now than I was the year before surgery. I'm not on Prednisone anymore! It just wasn't what I was expecting for my outcome, is all. Even after 5 years it still gets me sometimes. It's hard to be truly prepared for something as life changing as surgery, and I'm sorry I didn't prepare well enough to realize you'd be gone when I woke up. I hope others will be more prepared than I was, and consider their possible outcomes carefully. I'm adjusting without you, my long lost ileocecal valve, and while it hasn't always been fun I'm happy I can say it hasn't held me back yet either. Though there have been a few close calls.

Goodbye, lost piece of me. You are irreplaceable (I've asked!), and I hope you are the last of my guts I will ever lose. You sure will be remembered now.

Yours truly,

Marc

Complicated

In addition to my Psychology major, I decided to minor in English. For no good reason really, just because I liked reading and discussing literature and wanted to continue with it. There are few real requirements for a minor - a Brit Lit class here and there - but generally you get to choose from a range of courses. And that’s how I ended up enrolled in a literary non-fiction class. 

The books we’re reading this semester are truly fascinating - memoirs and essays that I likely wouldn’t have been aware of on my own and yet have really liked so far. As part of the course, a partner and I get to present one of the course books, and once I saw the medical book, ‘Complications’, I knew it’s what I wanted to do. (After all, what IBDer can resist a medical book?)

Then began the task of reading the book. It’s an accessible read, easy to get in to, but I found it very difficult to ‘get out’ of. Mid-way through the book I developed an aversion to it and the physician-based approach it took, a sentiment of ‘sewing the patient up’ and the patient being ‘a-okay’. What about the recovery, those days in the hospital with pain medication and walking laps around the nurses’ station? What about the months afterwards when you’re in between illness and health? What about the patient as an individual?

I know I read between the lines and perhaps gleaned things the author did not mean. Nonetheless, no matter how far I can physically get away from a hospital, I am a patient. I am a patient who knows that the best doctors are those who know what my major is and not just where my disease is, who know how to make me laugh and not just cry, who know my preferred ostomy products and not simply that I have an ostomy. The book made me feel uneasy and exchangeable - that patients were all just patients, a mass of individuals who blended together. And truthfully, that is not what the book said, it did speak of the unique qualities of patients, but in a dismissive quality that made me grimace.

And it makes me wonder - I want to be a clinician and a researcher, but if I can only see the patient in the mirror, what does that mean? I think what it means (after a lengthy self-reflection) is that I see my own experiences in others, regardless of age or disease, my identity as a patient is essential in being able to empathize with others. You can’t know what blueberry pie tastes like unless you’ve had it, you can’t know what it’s like to live with a chronic disease unless you have.

In the ever-wise words of Avril Lavigne, “Why do you have to go and make things so complicated?” I don’t regret reading the book for a moment because it gave me some insight to a physician’s way of thinking. If anything, perhaps, it makes me want to work harder so that we can understand patients as a whole and not just a sick organ.

Jennie