Crohn’s Disease Diagnosis Story

Back in February, a dream (albeit a f***ed up one) came true for me. I finally received a diagnosis for why I have struggled to stay healthy the last ~2 years. During those two years, I have suffered from a strange constellation of symptoms that no one could seem to put together. I have seen so many doctors I have lost count and specialists from ENTs, to pulmonologists, to rheumatologists, top gastroenterologists. If they are an -ologist I have probably seen them. I even saw a naturopath and spoke to a few registered dietitians. Almost every test would come back normal and I would be told some version of the phrase “you are fine, nothing is wrong”. Evidently, nothing was wrong enough for anyone to be able to help, despite feeling at times like my body was completely giving out on me. The most of an answer that I ever got (until a few weeks ago) was that it was likely something autoimmune in nature. 

As a professional athlete, it has become my job to listen very closely to my body. I am supposed to listen to every little creak it makes; to every little ache and pain. While this has helped to make me a successful professional runner it also led to me noticing subtle things that doctors and standard medical tests couldn’t detect. Don’t get me wrong, I did have a handful of symptoms proven by tests. I noticed that I had suddenly lost hearing in my right ear. After completing an audiology test, I had indeed lost hearing above a certain frequency in that ear. I also had a rash that covered both of my legs from shins to thighs. While I was not able to get this biopsied by a dermatologist, I did take photos of it and everyone agreed it was not a normal rash. But what all of this really taught me was that in the US medical system, it doesn’t matter how bad you say you feel, you must prove it with hard evidence. You need to bring the receipts, so to speak. Otherwise, very few doctors will take you seriously or be able to help you. It doesn’t matter if you are a 2x World Champion either, no one will believe you when you say you are tired or don’t feel well if you can’t somehow prove it too. I have a lot to say about the American medical system and about how doctors treat their patients but that is a story for another day. 

***And one caveat to note is that I do have a primary care doctor who I would trust with my life and he is the only doctor that listened to and believed me unconditionally during this time.

As you can imagine, I started to believe that all of this was in my head. Maybe it was just anxiety? Depression? Not eating enough to fuel my training? It didn’t help that doctors were also suggesting these ideas as possible answers for why I wasn’t feeling well. And so, I would do what any pro athlete would do, I would try to convince myself that things were fine. It was me, I was the problem. I just needed a little motivation to get things going so I would man-handle my way through weeks of training. I would get in 5-6 weeks of decent training before my body would blow up on me again. I have had a few astute coaches ask me why my Strava graph looks like the Patagonia logo and this is why. Despite how difficult and unfulfilling training was, I did manage to make it to a few start lines during this time. And on paper, these race results are all things to write home about: "3rd in my Golden Trail Series debut", "won my 4 US Mountain Running title", "won a 3 day stage race in Patagonia". But after every race I would experience an inevitable crash, or flare, as I have now learned they are called. The surge in inflammation after the hard effort was like a runaway train and too much for me to recover from no matter how much I slept or ate. Mentally, I would be completely drained from the amount of emotional and mental energy I would have to expend on race day to will my body to perform at the level it needed to. So I started to internalize a lot of this. I started to think that maybe I was just a bad pro athlete, that I wasn’t tough anymore, and that running had always been this hard I just lost my motivation. I started to think that I was a crazy lunatic living in an alternate reality, or worse, a hypochondriac. My self-esteem and confidence took major hits. 

Only after symptoms escalated to repeatedly passing blood in my stools, while losing 8 pounds in 6 weeks, all while eating nearly 4000 calories a day was an answer to this madness discovered. In February I underwent an upper endoscopy and colonoscopy and it was found that I have Crohn’s disease in my small intestine. According to the Mayo Clinic Crohn’s disease is “a chronic inflammatory bowel disease (IBD) that affects any part of the gastrointestinal (GI) tract. It causes inflammation and damage to the lining of the intestines, leading to various symptoms and complications. The exact cause of Crohn's disease is unknown, but it is believed to be an autoimmune disorder where the body's immune system mistakenly attacks healthy intestinal tissue. Genetic and environmental factors may play a role in its development”.

So they were right about something, it was autoimmune in nature. 

After getting this diagnosis I felt an overwhelming sense of relief. The one thing that I had been dreaming about the last 2 years had finally come true. Yes, it is true that I had been diagnosed with a disease. Probably news that would make most people more upset than relieved. But for me, it was all I had wanted. During the last 2 years, I hadn’t even been able to dream about goal races or setting PRs. The only dream that I had the mental, emotional, and physical space for was getting an answer to my problem. And now I have one and I can finally breathe. I can finally start to live again and move forward. 

My doctors have told me that treatment for this disease may take up to 12 weeks before my body starts to respond and feel like itself again. As per my doctor’s request, I have agreed to tone training down to a very minimal amount during the first 12 weeks of treatment to give the medicine a chance to work. This means that my races this spring and summer might look a bit different than originally planned (more to come on that!). 

After that, my team is very hopeful that I will be able to find a training and racing regime that works for me and my health constraints. I acknowledge that I am lucky to have a mild to moderate case of Crohn’s right now. My goal is to keep flares to a minimum so that the disease does not progress and ruin my quality of life later on. Some people with this disease are not so lucky and experience far more life threatening complications than I have thus far and my thoughts go out to them. 

Undoubtedly, it will take some time for me to physically and mentally recover from this ordeal. But I am taking things in stride and truly this diagnosis is a bright light at the end of a very very long tunnel for me. 

For more information on Crohn’s Disease or ways to support those with IBD please visit https://www.crohnscolitisfoundation.org/