Carrie Johnson: three time Olympian & Crohn’s patient
I was approached earlier this week by Crohn’s & Me to see if I was interested in interviewing any national advocates for Crohn’s and Colitis Awareness Week. I jumped at the opportunity. But never in my wildest dreams did I think I would be interviewing three-time Olympic sprint kayaker Carrie Johnson.
I wrote briefly about Carrie prior to the Olympics. However, there is so much more to her story that I learned after talking with her for 30 minutes. So here is Carrie’s Crohn’s story, as told to me.
“It’s really important that you don’t think of yourself as suffering from Crohn’s Disease but living with it. That’s the important way to phrase it and way to look at it.”
That was the main point that Carrie stressed throughout my interview with her yesterday.
Carrie was diagnosed with Crohn’s Disease in 2003 when she was 19 years old.
Carrie bounced from doctor to doctor for three months trying to treat her symptoms until she ended up in urgent care one weekend. It was then that she was given a list of doctors with different specialties. One of those doctors was a gastroenterologist who ultimately diagnosed her with Crohn’s Disease, something she had never heard of previously.
“On one hand, it was nice to have a diagnosis and something that I could work towards correcting. But it was also very scary in the sense that it was something I had never heard of. My first reaction was to do research on it. I read several books and did some general Internet research… you see the basic information [about the disease] but you also come across worst case scenarios. For a little while, I got very caught up in being worried about all the what ifs that could potentially happen.”
It took working with her doctor, starting to feel better and getting back into training to get into the mindset that she needed to work on living her life the way she wanted to live it and not trying to control things that were out of her grasp.
In the beginning, Carrie stressed about being somewhere or having to compete and needing to use the restroom. But now, it doesn’t phase her much.
“I go somewhere now and I don’t really think about it but I’m aware of where the bathrooms are. Its become a little bit more of something that I do without thinking about it [or stressing] over. For me, I’ve just come to the mindset that I can’t stress over it. It’s not productive and I really need to just make the adjustments that I need to make and work the best I can in the situation.”
Carrie’s family and fiance, former Olympian David Gubser, have been her biggest support system throughout her journey with Crohn’s so far.
“They’ve been really good in supporting me and…really trying to make sure that I stay positive and keep looking forward, which I try very hard to do but as everybody whose dealt with anything knows, it can be hard when you’re right in the middle of it. I think for people who have Crohn’s or IBD, it’s really important to find [someone] that you can talk to and really have someone share what you’re going through.”
Training & Competition
Carrie competed in the 2004, 2008, and 2012 Olympics. However, Crohn’s Disease caused some interruptions in her training and competing, including taking her out of training in 2003 and 2009.
After competing in Beijing in 2008, Carrie became extremely ill. She was originally diagnosed with mono but then began developing symptoms of a flare. The flare got progressively worse and she ended up in the hospital in August of 2009 for a week. By working with her doctor, Carrie was able to find a new combination of medications that worked for her and made a complete turn around, training and competing in 2010.
When she first was diagnosed, one of the most difficult things Carrie had to cope with was being unable to train.
“It was very hard for me to not be able to train. But I knew that I needed to give my body time to recover and to heal. I actually found that Crohn’s really provided an additional motivation for me when I could train because I really appreciated being able to be there and being able to train and push myself. I knew what it was like to really want to be able to do that and not. In that respect, it gave me an extra push when I was training.”
Carrie had to learn what her body would and wouldn’t tolerate.
“Running is something that really irritated by gastrointestinal tract. It also put me in the uncomfortable situation of potentially being out in the middle of a run and needing to use the restroom.”
She solved that problem by switching to road biking which allowed her to do something really active without causing problems.
Like many IBD patients, when she’s having a flare, Carrie has problems keeping her weight up. However, Crohn’s gave her the incentive to eat healthy and stay away from trigger foods, like dairy.
Carrie also dealt with the issue of eating the right foods while training. For IBD patients, consuming the amount of calories necessary while training in a competitive sport can be difficult when you often don’t feel well.
“It was mainly difficult to consume enough calories when I really just wasn’t feeling hungry or generally feeling sick. But I worked with a nutritionist at the Olympic Training Center and we came up with ways where I could get the nutrition and calories I needed in forms that worked for me.”
While competing in Athens, Beijing and London, Carrie had to adapt her diet while traveling, including bringing some of her own backup food.
“The last couple years, I would actually bring a small crock-pot with me. If the food that we got at the regatta or hotel wasn’t something I could eat, I would then go make my own food. I learned what I needed to do over time and as I did that I became a lot more comfortable with traveling and staying overseas.”
IBD & the Olympics
Out of curiousity, I asked Carrie if there was much familiarity with IBD within the Olympic Committee when she was diagnosed. Her response was what I expected- not a lot of it.
“They were very supportive and they, as a whole, really tried to make sure that I had all the resources that I needed whether that was finding specialists to talk to or the nutritionist doing additional research to find out things that might work for me.”
Carrie said that, aside from a 2008 U.S. softball player, she doesn’t know many other Olympic athletes who have had IBD.
Carrie joined with UCB and Crohns & Me for Crohn’s and Colitis Awareness Week this year and recorded videos to raise awareness of IBD. She is also in the process of revamping her Facebook page to make it more of a Crohn’s community and to provide support to those living with the disease.
“Hopefully, [I’m] letting them know that they aren’t the only ones dealing with [Crohn’s Disease] and that its not something that has to stop you from accomplishing what you want to accomplish.”
Carrie previously participated in the Crohn’s and Colitis Foundation of America’s Take Steps walk in San Diego and attended some of the organization’s symposiums and informational events. She hopes to get more involved with advocacy efforts in the future.
What is she up to now?
The 2012 London Olympics was Carrie’s final competition- she is now “retired.” But by no means is she sitting still.
“I competed in London on a Friday and flew to Sacramento Sunday night and started school Monday morning. I went straight into the veterinary program at UC Davis and that’s full time commitment so I wouldn’t be able to do training and school to the extent that they need to be done individually.”
Carrie passed along some great advice for newly diagnosed IBD patients.
“I would tell them first to find a GI specialist that they work really well with and that they feel like they can communicate with. Then I would tell them to find a support group, whether its just one person that you can honestly talk to or whether its joining a support group, getting involved in CCFA or finding a support group.”
You can read more about Carrie’s Crohn’s story from her firsthand account on the womenTALK blog.
Thank you so much to Carrie for taking the time to chat with me and for all her work raising awareness of IBD!