When I first started experiencing the symptoms of inflammatory bowel disease, I was just 20 years old. It was the beginning of my junior year of college – I was studying abroad in Versailles, just outside of Paris – and I noticed something was wrong within my first month there. I was having constant stomach pain and needing to go to the bathroom urgently, eventually I started to see blood.
Being in another country affected how I handled what was happening because I was alone and afraid, and I only had a basic understanding of the French language. I let myself get much sicker than I would have in the U.S. because I didn’t have my family support system with me and I didn’t quite know how to seek out help.
Once I saw a doctor I was immediately hospitalized in Paris. An abdominal scan showed that my intestines were so inflamed that a colonoscopy would be dangerous. However, because of my symptoms and other test results my doctors were confident that I had severe ulcerative colitis.
My diagnosis was a fast process but very intense. I quickly had to learn the French terms to describe my pain and where I was feeling it. The French nurses even found it funny how they could tell how awake I was after an exam with anesthesia. I would wake up and speak to them fairly well in French, but as I became more alert I could communicate less.
But aside from a few moments, there wasn’t much to laugh at. The entire experience was terrifying. You don’t realize how important social cues are when speaking to someone with the same native language. My doctors in Paris could speak English, but it was very textbook. A lot of the time the translation wouldn’t be exactly right. I was also young and I didn’t know the right questions to ask to get the help I needed. That added to my fear.
I am lucky that my dad is a physician and has Crohn’s Disease himself. He made calls overseas to talk to my doctors and to guide me through my diagnosis.
Having my father’s support and advocacy was hugely helpful – because he knew what I was going through on both a personal and medical level. However, he was diagnosed later in life and immediately responded to his medication. My diagnosis and the nature of my disease sent us down a very emotional path that neither of us was really prepared for.
Once I had my UC diagnosis, my doctors tried different medications for months but each one would only work for a small amount of time until my symptoms came back. I tried my hardest to stay in Europe to continue my studies, making what felt like weekly trips on the train from Versailles to Paris for infusions. By my spring semester I realized that wasn’t going to work, and I came home to the States.
I must have tried every medication on the market trying to get my symptoms to stabilize. I even had the surgeries for a J-pouch but within a year I developed ulcers and inflammation in my new pouch. After this my doctor in the states changed my diagnosis to Crohn’s disease. I don’t think the first diagnosis of UC was wrong, I think my disease is just resilient and can’t be so easily labeled.
In May 2016, I finally crashed really hard and I felt like giving up. I am 5-foot-8 but was only 100 pounds and was severely malnourished. My doctor encouraged me to get a “temporary” ileostomy to allow my bowel to rest. When I still could not gain weight, I was put on total parenteral nutrition (TPN) – a line was placed in my arm and every night a bag of nutrition was hooked up to it. However, I continued downward and eventually ended up in the ICU in septic shock.
It took a long time to pick myself back up, but eventually I got stronger and was feeling the best I had since being diagnosed. A year after being released from the hospital I made the decision to completely remove my J-pouch and switch to a permanent Ostomy because I knew I could never go back to how limiting the pouch was for me and the unpredictability of my disease with it. I’m now in complete medical remission and don’t need to take any medication for my Crohn’s.
Despite my physical struggles, I stayed in design school and continued my education. It helped me a lot to have something else to focus on with so much hanging over my head medically. But I couldn’t have finished school without the support of my family and friends.
I lived with my brother when I first started Grad school and was going through the J-pouch surgeries. Recovery from one of them left me very weak and I had a lot of trouble with my ostomy. My brother learned how to change an ostomy so that he could help me each time. Because I was still new to having an ostomy having him around helped a lot with the anxiety and confusion that came with it.
My parents live over an hour away, but my mom would drive down to take me to appointments, and my parents were always nearby when I was in the hospital. When I was diagnosed instead with Crohn’s disease I was feeling very unwell and had a lot of tests and procedures my mom came to stay with me. She ran errands I couldn’t, cooked meals for me, and drove me to and from class because I wasn’t allowed to drive while on pain medicine.
I also made two great girlfriends in grad school who became part of my support system. Something I will never forget is waking up one night with severe stomach pains and calling one of my friends at 3 am to ask her to take me to the ER. Her response was, “I’ll be there in five minutes.” She didn’t even ask what was wrong before jumping out of bed and getting in the car. She stayed with me in the ER for 12 hours, only leaving so she could get to class. When my other friend found out she was actually upset that I hadn’t called her too. Having friends like that really helped me to get through the worst times and I would not have finished my degrees without them.
Because I was diagnosed as a junior in college and then went on to tackle three years of graduate school, I was always dealing with school deadlines and a lot of stress – which made my disease flare and get worse. I stuck with it because I needed something to focus on or I would get down emotionally. I was able to achieve dual Master of Architecture and Master of Business Administration degrees, but it caused me so much stress that I ended up in the ICU a few weeks after graduation. I realized that in order to live the life that I wanted I needed to find a personal sense of balance.
I realize now there were times when I was too uptight or too ambitious academically, and times when I sacrificed my health in order to push harder in school. Now, I have ways to manage stress in my life- like journaling and exercising a few times a week. Taking care of myself first allows me to do more.
I was actually supposed to start my first job when I was in the hospital. I had to push back my start date multiple times so that I could take the time that I needed to recover. I was released with the line in my arm for nutrition and didn’t want to start work with it still in. Over about a month I pulled my weight and strength back up and my doctor gave the order to remove the line the day before my first day of work. I was able to begin my new chapter with a fresh start.
Since then, I’ve run a half marathon with Team Challenge to raise money for the Crohn’s & Colitis Foundation – the same race my dad ran in my honor the summer after my diagnosis. Being able to run that a year after being so low felt like I was finally overcoming the disease.
Now that my Crohn’s is under control, I enjoy doing advocacy work and I volunteer regularly with the Mid-America chapter of the Crohn’s & Colitis Foundation. One of the biggest ways I’ve gotten involved is by volunteering as a counselor at Camp Oasis, a camp for kids with Crohn’s Disease and ulcerative colitis. There I am able to support and encourage children living with inflammatory bowel disease, and to facilitate them interacting with other kids their age who are going through the same issues.
Living with this condition has definitely shaped who I am as a person. In my early 20’s, when everyone else was going out and having fun, I was being very careful about managing my energy, schooling, and appointments. Staying healthy took priority over going out and having fun. Having to grow up so fast was hard, but it gave me a lot of confidence and it grew my emotional intelligence. I know my strengths and I know my limits and how far I can push myself.
The biggest piece of advice I have for others living with Crohn’s or colitis? Don’t be afraid to share what you’re going through with people. For years, I was afraid to say what was wrong with me because I was scared people would look at me differently. I would cover up my disease and tell people, “I have stomach issues,” because I felt like there was a stigma associated with bathroom illness.
I decided to finally start to open up about my illness in grad school. I decided to explain it to a teammate on a school project - who would later become one of the two friends I mentioned – so that she knew how it might affect my participation. I was so surprised when she responded, “Oh! I know what that is. My little brother has Crohn’s Disease.”
Once you’re willing to open up, you’ll find other people have similar stories they can share that help them to understand. I was so worried about someone saying, “Oh, that’s gross,” but no one has ever responded that way. Now I’m at the point where if someone does think it’s gross then I know they’re not the type of person I want in my life.
It took me a while to get to this point. I still have the occasional issue with my ostomy and lingering emotional issues from going through trauma, but at 27 my life feels pretty typical now. I’m aware of the resources that I have around me and I have a good support network. Since that whirlwind year of college when I was diagnosed, I’ve improved so much physically – and now I’m working on caring for my mental health in the same way.