When I was eighteen, I moved away to college. When I was eighteen I could eat whatever I wanted. When I was eighteen I was an athlete going to school on scholarship. When I was eighteen, I got sick. My name is Kaitlyn and I have ten chronic illnesses, but today I am going to talk about my journey with Crohn’s Disease.
When I moved away to college I was what we would consider, a healthy person. I was going to school on a soccer scholarship and intended to play all four years of college. The only health concern I had was a cyst I had in my right knee since I was eight years old, but that had not caused any big issues….. until my college preseason. During preseason, we were doing a drill, when I heard and felt a pop in my knee. What I did not know was that my cyst had been tearing my meniscus in my knee all those years and finally delivered the final blow. A few weeks later I had my surgery and originally planned to return to the field within a month’s time. However, my incision got infected and I was out/ in a knee immobilizer and crutches from September to December of 2018, basically my entire first semester of college.
When I returned from Christmas break, I was so excited to experience the normal life of a college student, as I no longer had knee problems, however, my body had other things in mind. In January 2019 my GI symptoms started. I’ll spare you the details, but it was more than just throwing up.
In February I finally went to a primary care office near my school and was told I had colon cancer, without having any scopes or labs drawn. I called my mom bawling my eyes out, even though the medical side of me should have known that they cannot diagnose cancer with no tests… she told me that she would get me an appointment back home with a gastroenterologist.
In March of 2019, I had my first visit with the GI, in June I had my first endoscopy, and in July I had my first colonoscopy. I was told all of my labs and scopes were normal other than showing inflammation and that I needed to go on a low FODMAP diet. I continued to get sicker and that GI was impossible to get in touch with. Due to not being able to play my first season and my health rapidly declining, I made the hard decision to quit sports to better myself in the long run. This was an incredibly hard decision as soccer was all I had known for fifteen years. My life revolved around that sport for as long as I could remember. At this point I didn’t know what to do. I was an emotional wreck from quitting the sport I loved dearly and from my health declining and not having any idea as to why.
As I returned to school in the fall of 2019, after being told I was “normal,” I continued on the Low FODMAP diet, but my health continued to decline. It was next to impossible to get in touch with the GI I went to for all of that year, so I decided to look into a new one that could see me at the beginning of 2020.
In January 2020 I met with my new GI and took in all my results from the original one. He asked if I was aware there was an ulcer in my colon on the colonoscopy performed in July 2019. I told him I was told that all of my tests were normal other than inflammation, so he asked to re-do them himself with a suspicion that I had some level of IBD. In February 2020, I had these scopes performed and was told I then had eight ulcers in my colon and erosion of my cecum. I was devastated, but relieved to have answers. We began trying to find a treatment that worked for me, but a month into our treatment trials, the world went into lockdown because the COVID-19 pandemic had hit. All of my visits became Telehealth unless I absolutely needed to go in. In 2020, we trialed a lot of different medicines and I had scopes done every 3 months to make sure things were not getting worse. Every time I would try a new medication regimen, it would work for a few months and then my symptoms would come back.
In April of 2020, I started my page on Instagram to connect with other people with IBD as well as track my journey. There were people who shared their story so openly with the world and their stories gave me a lot of diets, treatments, holistic practices, and other things to try. I decided that I would share my story just as openly in hopes to help others out there like so many helped me. However, what I did not expect was to build such an amazing community and support system of people struggling with invisible chronic conditions who understood exactly what I was going through. I did not expect to meet people who I now call some of my closest friends, but have never met in person.
Anyways, back to my Crohn’s journey. I ended up trying every diet out there. I tried the IBD-AID, SCID, Low FODMAP, gluten and dairy-free, Paleo, Keto, etc. As I did these diets, I found foods that triggered my symptoms and cut them out of my diet. While figuring out these trigger foods, I did an IBD intensive that taught me how to manage my symptoms in a more holistic way, as well as how to manage stress better. Between the intensive, diet, and medications I was able to keep my Crohn’s at bay for most of 2021 and 2022. In 2021 I got scopes every six months to track my Crohns Disease and was told I was in microbial remission in November 2021.
They say that once you get one autoimmune condition, you get at least one more, however in 2021 and 2022, I have been diagnosed with at least nine other illnesses including PCOS, Hidradenitis Supprativa, Dermatographism. Dysautonomia, POTS, Cyclic Vomiting Syndrome, Vasovagal Syncope, Long Covid, and Lyme Disease. Through testing for these other illnesses, my Crohn’s Disease was being checked up and tracked on pretty regularly. This past June and July I underwent a lot of testing at Mayo Clinic for my Cyclic Vomiting Syndrome. They had access to my entire GI history and checked on Crohns Disease while I was there to make sure that it had not worsened and that was the actual issue at hand. On September 7, 2022 my team at Mayo Clinic informed me that I am in full remission, with hopes that my Crohn’s will not return, but an understanding that at any point, I could slip out of remission. I had a lot of mixed emotions about being in remission, as the news that followed consisted of having another illness, a more rare illness, that has no real treatment. As time has past though, I am very fortunate and thankful that I am now in remission as I battle these other health concerns. However, even though I am in remission, I will never stop fighting and advocating for those with IBD.
If you would like to follow more of my journey, you can find me on Instagram and Tiktok at @trusting.my.gut and my service dog’s journey at @service.dog.sebastian and I look forward to connecting with all of you!
Yours truly,
Kaitlyn
