Erin

Marathon #35 – 26.2 for Erin

Erin’s Story:

My name is Erin Dwyer-Frazier and I was diagnosed with Crohn’s Disease when I was 13-years-old. It was the summer before I started high school. At the time, I was a happy, healthy, honor roll student who regularly finished in the top ten in swimming races at the New England (and even the entire East Coast) level. I trained 15+ hours a week and absolutely loved it. The summer I was diagnosed, I lost fifty pounds in approximately a month and at New England Championships at the end of the summer season, I almost fell off the block before my race (my parents pulled me out of the rest of the meet after that). But in many ways, I was lucky. My symptoms were incredibly stereotypical – weight loss, exhaustion, pooping ALL the time – and I was diagnosed with Crohn’s Disease less than two months after I first got sick. After being put on 80 mg of prednisone a day (along with lots of other medications), I was back to swimming very quickly.

When I started high school, I signed up for field hockey, theater tech, debate team, mock trial, and everything else I could think of; it turns out that combining prednisone with adolescent hormones only makes the characteristic mania worse. And while everything I was doing was, objectively, a little bit much, the doctors and nurses in charge of my care went out of their way to make sure I could achieve everything I wanted. And when my Mom asked my pediatrician if I should be doing all this her response was really powerful. She told my Mom: “with most of my Crohn’s patients, I ask them to try to get out of bed every day, to work to get to school, and to do as much of their homework as they can. Erin shouldn’t be able to do everything she’s doing. But I’m not going to be the one to tell her if you aren’t.” And for the better part of ten years – through high school, college, and the first year or two after college, that attitude was what got me through. I shouldn’t have been able to do what I was doing but I did anyway.

Unfortunately, in 2007-2008, the summer before I started law school, the reality of this disease finally caught up with me – just as it catches up with so many of us.

Now, I could start by giving you the numbers of what this disease has done to me in the last 11 years. Since starting Remicaide in 2008, I have been on five different biologic medications – some were infusions, some were injections at home, and one was even an oral pill. Every single one of them had potentially terrifying side effects that I luckily mostly avoided. But most of them also just didn’t work – my inflammation didn’t respond, my fistulas came back, or one thing or another went wrong necessitating yet another change in medication. Even more draining, I have had approximately 15 surgeries (I say 15 because I have lost track). I have no had my entire colon and rectum removed, meaning I have an ileostomy for the rest of my life, I have had the stoma itself reformed or moved several times, I have had sections of my bowel resected, I have had my duodenum bypassed entirely because it was strictured, and I’ve had an abdominoplasty (stitching together the split muscles of the abdominal wall) to try to keep my stoma from prolapsing (which is what happens when your stoma, and therefore your intestines, falls out of your abdomen.

Perhaps the worst thing was in late 2015 when my bowel perforated, leaking bowel fluid into my abdomen for almost 48 hours before it was discovered, and requiring massive emergency surgery that left me in the hospital for almost two months over Thanksgiving, Christmas, and New Year’s. It took me almost a full year to physically recover from that experience and when my body was finally mostly recovered, that was when my brain decided to get in on the action and I had a serious bout of PTSD as I truly came to terms with the fact that I could have easily died.

I can also tell you about what Crohn’s has taken from me professionally. Even though I finished law school, I’ve never been healthy enough to hold down the “normal” legal jobs that I so desperately wanted. Ten years ago, I hoped that by now I might be making partner at a law firm. Instead, I’m happy that I have a job at all – one that allows me to work from home and has a flexible schedule and understand that sometimes (not infrequently) I will just not be in the office, whether it’s because I’m in the hospital or because I’m stuck at home dealing with one medical issue or another. There was a time in my life where I thought I was going to take over the world (metaphorically) and now my dreams are so much smaller. They aren’t necessarily worse and I’m so happy and lucky to have the life that I have, but Crohn’s took a lot of things away from me and I don’t want another generation to feel that way. I don’t want the next generation to mourn for who they could have been if only their body had allowed it.

This story is exhausting even to write down. I have sat down to write this dozens of times for Marc because I appreciate so much what he is doing for Team Challenge and for every single person with IBD. Every time I see that he has run another marathon for the Crohn’s & Colitis Foundation and for us, it makes my whole day better. In fact, walking the Boston half-marathon in 2010 with Team Challenge New England is one of the best things I have ever done. Suddenly, I had a family of people who didn’t just empathize or feel bad for me because of what I was going through, they really and truly understood it. The Crohn’s & Colitis Foundation does so much more than just fundraise for a cure, it provides a space and a community for people like me who DESPERATELY need one.

Because what they don’t tell you when you get diagnosed with IBD is that a lot of the time, the health stuff isn’t the hardest part. You have doctors and nurses whose job is to treat your medical problems. And even though the pain can be absolutely debilitating, you can learn to deal with that too. But what they forget is that this disease doesn’t go away when that first terrible flare is over. I’ve seen a quote many times that goes something like this – “I never expected one day to wake up sick and just never get better” and that is the reality of what IBD truly is and if you haven’t lived that experience, I don’t think you can ever really get it.

When the worst of the major flares or the big surgeries are over, some people really do forget that you haven’t gotten better. Or even if they don’t mean to, there is always part of them that’s just waiting for that day – that day when you’re “better”. But the Team Challenge family never forgets. People from Team Challenge remember to check in even when things are going “well.” People like Marc and everyone else on the TC squad run for a cure year-round and every three months I’m reminded that there are all these people putting their bodies on the line for ME and for people like me. Facebook messenger groups, text messages, phone calls, visits, and everything else from this family remind you that you haven’t been forgotten. And in return, you make sure that other people don’t feel forgotten either. And it means the absolute world.

So please donate to Marc and all of the Team Challenge runners whenever you can for as much as you can. Even if a cure isn’t around the corner, you never know who will see that donation or see that race bib and feel seen and loved and remembered. Crohn’s and Colitis can be terrible, isolating diseases but the Crohn’s & Colitis Foundation and Team Challenge make it a little less so. And that is everything we could ask for. Well, everything other than a cure of course!