I eventually turned to the internet to find other people who were going through the same thing. Through social media—specifically Instagram—I found a lively, empathetic community. I was able to connect with others who were also struggling, share thoughts and questions about treatment plans, and foster emotional connections with people who understood what it was like to live with this condition. This really helped me move forward after my diagnosis, and I always recommend that people who are newly diagnosed with Crohn’s find a community they can turn to for support.
Taking a flexible approach to my diet and lifestyle
After my diagnosis, I tried many diet changes to see if modifications could help improve my symptoms. There hasn’t been a one-size-fits-all solution for me, so I adjust my diet depending on how I’m feeling.
I tried an elimination diet—which you should do under the supervision of a doctor or a dietitian—when I was first diagnosed with Crohn’s to see if there was a specific food that was triggering symptoms. I found that certain fruits and vegetables made my symptoms worse, and how they were cooked was also a factor. Products containing gluten also worsened my symptoms, so I stuck to a gluten-free diet for years, which seemed to help. I would also stick to a liquid diet during a flare-up to make things more digestible.
In my early 20s, I still drank alcohol—at brunch, happy hours, and wine nights. Now, I only drink wine when I decide to enjoy a bit of booze. Similar to food, I just have to take it as it comes and see what feels right.
After having my son in 2020, my body changed a lot, so now there are new things that bother me and gluten is back on the table for me to eat. I’m constantly reassessing how something makes me feel because I’ve learned flexibility is key. Ultimately, I’ve found that food isn’t the biggest trigger for me anyway—stress and lack of sleep are.
Practicing patience in my treatment journey
Finding the right Crohn’s treatment hasn’t been easy, so I’ve had to be patient and accept that it’s a trial-and-error process. When I was first diagnosed, I started taking antibiotics and anti-inflammatory medication like steroids. None of those worked well for me, so I started on a biologic medication, a series of injections that were administered every six weeks or so. I tried that for about a year without any real success, so my doctor switched me to a different biologic drug that’s given as an intravenous infusion. For more than five years, I’ve received this treatment every six to eight weeks, and it’s been the most successful so far. I hope to continue it as long as possible.
I also take my mental health very seriously and that has played a big role in managing my Crohn’s and helping me feel at peace. I go to therapy regularly to help reduce stress and anxiety and to help me better handle the uncertainty the disease creates in my life.
Being honest about my limitations
Dealing with the unpredictable flare-ups that are characteristic of Crohn’s disease was a lot more difficult when I was in my 20s, when I had a robust social life and worked in an office. At that point, it caused me a ton of anxiety to be sick in public or to have to let people down, whether it be friends or colleagues. Now, I am a lot more comfortable being open about my health. I work 100% remotely, I identify as disabled with my employer so they understand if I need accommodations, and my friends and family all know my situation so I don’t feel pressure if I have to cancel plans.