Marathon #37 – 26.2 for Christine
My story begins with me. I was diagnosed with UC in 2006 when I was 28. I’ve always been uncomfortable talking about bathroom habits, so it took a few months of odd symptoms for me to admit something was wrong. When I finally went to the doctor, I was referred to a GI who could finally give a name to my symptoms. For the first year or so, I struggled with my disease – the medications didn’t seem to be working and I was repeatedly going on prednisone to deal with constant flares. In addition, my first GI wasn’t the best at explaining things and I hadn’t quite yet learned how to advocate for myself. Ultimately, I ended up switching doctors and found a combination of medication that has kept me in remission and/or asymptomatic for most of the last ten years or so. I feel blessed to be in this position but know that my situation could change at any moment. And looking back at my hardest times, they seem inconsequential when I compare them to what I know others have gone through.
Sometime after my diagnosis, I stumbled upon the Crohn’s & Colitis Foundation website and Team Challenge caught my eye. I looked at it, and my initial thoughts were “that’s too hard for me to do.” I knew I’d be able to walk a race due to past experiences but the fundraising seemed impossible. I visited the website many times that year before I finally decided to take the plunge. I decided I’d do it once, get it out of my system, and go back to my “normal” life.
For the first few years after my diagnosis, I was quiet about my disease and didn’t share with too many people other than family, close friends, and my immediate boss at work. So signing up had an extra element of anxiety for me because I knew in order to effectively fundraise, I would have to share my story. So I did. And a funny thing happened as I openly shared my story – I quickly found out I was not alone: a man at church had been dealing with it for over 20 years, a surprising number of people at work either suffered from IBD or knew someone else who did. And no one was turned off by learning about my disease – I had people asking me questions instead. And when training actually started, I quickly met other patients and caregivers around the country – I was no longer alone. My husband, Pete, and I met an amazing group of people who quickly became family to us. And when all was said and done, I was converted to someone who couldn’t wait until I could do it again. I had found a way other than just taking more pills to fight back against my colitis. I’ve now completed 7 half-marathons and 4 cycle events with Team Challenge and my “family” continues to grow each time! And in a weird way that maybe only other participants can understand, I’m thankful for what my disease has given me.
I wish I could say that our story ends here with Pete and I meeting a great group of people and continuing to stay involved in raising awareness. But it doesn’t. In February 2011, Pete started complaining that he wasn’t feeling well. After about a couple of weeks of progressively feeling worse and no response to antibiotics, he referred to a GI who agreed a colonoscopy was needed but didn’t have any openings for over a week. Pete had lost about 20 pounds in two weeks and we didn’t want to wait that long, so thankfully, my GI was able to get him in the next day. While we knew IBD was a possibility, we really and truly thought it would be something else…I mean, what are the odds that we’d both end up with IBD? So you can imagine our shock when we were told he also had ulcerative colitis.
While the diagnosis was definitely surprising news, it was also a bit reassuring – we already know the enemy since we’ve been dealing with it for five years through me and now that we knew what was causing it, it could be treated. Only his health continued to decline. He was losing more weight and could barely tolerate eating. After trying a few medications with no improvement and losing 50 pounds in 5 weeks, he was admitted to the hospital to see if stronger IV medications and enteral nutrition would help.
He hadn’t been back to the room for long when a nurse ran in telling him to stop eating and drinking immediately. A few minutes later, we had a conversation with one of our doctors that changed our lives instantly….during a routine abdominal x-ray, there was evidence that his colon had perforated in multiple spots and he needed to undergo emergency surgery to remove his colon. This was exactly three weeks after his initial diagnosis. To say we were terrified is an understatement. If you’ve ever been a caregiver, then you probably understand the importance of appearing to be calm in situations when inside you are freaking out…this was THE moment when I realized there would be a lot of that in our future. And so I stayed calm as they prepared him for surgery. And I stayed calm when we prayed together and then said our good-byes….And then I lost it when I walked out of the room with my mother to wait for his surgery to be over. Later the surgeon told us his colon was one of the worst he’d ever seen. His situation was described as being right at the point of no return. We will both forever be grateful that we ended up at the hospital that day; otherwise, our story might have ended differently.
While his initial surgery was successful, he had to deal with many complications due to the shock that his body underwent. And the temporary ileostomy before his j-pouch surgeries were complete – talk about a bonding experience. Let’s just say that neither of us ever imagined we’d be sharing so much. In total, Pete underwent three surgeries within ten months and was on medical leave for nearly a full year.
Having seen both sides of IBD, I’m extremely grateful to everyone who continues to raise funds and awareness in the fight to find a cure. And I’m especially grateful for Marc, who not only has taken me from someone who thought 25-miles was a long ride and cursed on nearly EVERY hill to someone who rode her first century and only curses on the really bad hills now, but also dedicates so much of himself to the cause through his 26.2 For You program. I’m truly honored that he’s running a race for Pete and me!
Running 26.2 for Christine!
Marathon 37 – Recap