The Chronic Diaries: Brooke’s Journey with Crohns Disease

Where are you based?

I’m 32 years old, I live in New York.

What condition(s) do you have?

I have Crohn’s Disease.

What symptoms did/do you have? How were you diagnosed?

I have dealt with random symptoms since I was around 18 years old. I used to get uveitis (eye inflammation) almost every year, but for a long time I was told it was allergies. I had joint pain which was attributed to Lyme’s disease and fatigue which was attributed to being anemic. Eventually, I started having GI symptoms but they weren’t connected to Crohn’s for a long time. These random symptoms caused me to have a long road to diagnosis. 

I should have been diagnosed in 2010, when I was 23 years old. I was hospitalized with an intestinal abscess with no cause identified. I went through 3 years of surgeries and doctors’ visits because the abscess wouldn’t heal correctly until a surgery with a specialist. After that, I always struggled with GI issues, but blamed it on my diet as a college student. In 2015, I began struggling with joint pain and saw multiple doctors, including a rheumatologist and was diagnosed with Lyme’s disease. The joint pain subsided some after the antibiotics but I also began struggling with extreme fatigue. I was teaching and my colleagues were also constantly complaining about being tired, so I figured my fatigue was due to getting “old” (late 20s?!?!) and my career. In 2016, I thought I had appendicitis, ended up in the ER and was diagnosed with another abscess. Eventually, I was diagnosed with Crohn’s disease and had surgery to remove a portion of diseased colon. At 28 years old, I finally had an answer to issues that had plagued me since high school. 

How does this disease impact your daily life?

I was able to keep my job and this diagnosis hasn’t caused any major disruptions to my daily life.  I have been receiving Remicade infusions for the past 4 years, at first every 8 weeks, now every 6. It’s hard for me to tell if the symptoms I feel are side effects of my infusions or are from my disease. I have issues with brain fog, joint pain and fatigue, but not to the point that I want to stop my medications or I can’t work. Daily, I struggle with needing to go to the bathroom frequently and urgently. Thankfully, I am an English New Language teacher and I provide support in small groups to students, rather than being in one classroom all day long. So I switch groups often, which gives me time to go to the bathroom when needed. I also work with classroom teachers, which means I have someone else around if I need to use the restroom. However, my main issue is with fatigue. Teaching is a busy job as it is, adding in fatigue from my disease leaves me exhausted on a daily basis. Mentally, I am able to handle my disease because my mom has lupus, so I grew up seeing a role model tackle life despite their autoimmune issues. 

I often don’t talk about my disease to people who didn’t know me when I was diagnosed. I fear that people will find me incompetent if they knew about the issues I face. I find Crohn’s and Ulcerative Colitis difficult to talk about because they involve GI and bowel issues, which are so stigmatized. One thing I want to advocate for is for people to go to the doctor and push back if they feel like something is not right with their body. If I had fought to figure out what was happening to me in my mid-20’s, I could have possibly been diagnosed sooner, gotten on medication earlier, avoided a colon resection and been healthier for that portion of my life. Instead, I let it go when the doctors couldn’t find a reason why I had swollen eyelids, aching joints and serious fatigue. Looking back, I knew something was wrong with me, but I didn’t fight to take care of myself. 

Chronic Exposure Network