In the Blink of an Eye

I had my fourth colonoscopy last month. Can you believe it? I’m twenty-six and I’ve already had FOUR colonoscopies. It feels so unfair knowing that I have to do this every two years for the rest of my life. That’s means if I live to be 90, I would have about 34 colonoscopies. Ok, maybe I shouldn’t have calculated that – I’m a little freaked now. Even though I absolutely dread it, I know it’s important for the maintenance of my ulcerative colitis.

My last colonoscopy was in 2022 and I learned that I was in endoscopic remission. It was the best news an IBD patient could receive and definitely worth celebrating. Going into this colonoscopy however, something felt off. I have been feeling great and really didn’t have any concerns, but even if I’m feeling well, it doesn’t always translate to my colon looking well. So of course I had a sliver of doubt in my mind about the outcome.

After getting the pictures back, my colon looked normal to the naked eye. It took me about a week and a half to recover from the colonoscopy, which isn’t normal for me and I started to grow concerned. About two weeks later, my doctor’s nurse called me with the biopsy results when I was on my lunch break. I could hear a sadness in her voice when I picked up the phone and my heart sank. It was going to be bad news. She told me all three biopsies that were taken throughout my colon showed active inflammation/disease at the cellular level. A flare is coming. She ordered bloodwork to be done immediately and scheduled me for a follow-up appointment in a few weeks.

Whew, I was not expecting that. I hung up the phone truly in a state of shock. During that three minute phone call, my world was flipped upside down. What was a productive morning at work quickly turned into me going down the rabbit hole to rationalize how I could be sick again. It felt like the weight of the world was suddenly on my shoulders and I have no solid roadmap ahead. I knew there was a chance my disease could come back – it’s chronic – but not this soon. Not now.

This news means that my body is no longer responding to the Humira I have been taking for five years. I got really lucky with this biologic. It was the first one I tried and it worked for me – not initially, but after some time I started to see results. So the thought of switching biologics is a fearful one. What if the next one doesn’t work as well? What if I have to get infusions once a month? How long will the trial and error process take? There is so much unknown at this point and all I can really do is sit and wait to either decide on a new medication or get sick.

It was a bit of brutal wake-up call reminding me that I don’t have much control over this life. This disease is extremely unpredictable and can strike at the most inconvenient times. Things can change in just the blink of an eye. While I have a lot of fear about what comes next and old trauma being brought to the forefront of my mind, I know that I have the tools now to keep myself healthy. I know my limits and I know how to listen to my body. I have a great team of doctors, family, and friends surrounding me and that support alone keeps me going. While I cannot control my circumstances, I can control how I react to those circumstances. I will always choose to keep fighting.

To all my chronic illness warriors: Don’t take any healthy moment for granted. Change is inevitable and scary, but we can and should keep moving forward.