From Remission to a Crohn's Flare During a Pandemic
Years of trying to achieve Crohn's remission
I feel incredibly grateful to be able to share this, as the decade before reaching remission was overwhelmingly painful, marked with regular hospital stays, devastating medication side effects, and failures, and constantly struggling with my mental health as a result.
Previously, I honestly couldn’t imagine a life with Crohn’s disease in remission. But then it happened. I started celebrating each month that passed without a trip to the ER or an inpatient admission.
Then, months turned into seasons. And seasons turned into years. As I write this, I have officially gone 2 years and 5 months without wearing a hospital gown for anything IBD related. I am overwhelmingly grateful to write and share and live this, and I share it with a caveat.
Fear of the flare while in remission
Every single day of my life in remission, I did things to manage my IBD. Every single day of my life in remission, I remained a patient. Every single day of my life in remission, IBD was on my mind.
And most importantly, every single day in remission, I knew that the next day could be different. That my medication could stop working, my disease could flare, I could develop extraintestinal manifestations, and everything could change - so, I practiced gratitude, but stayed vigilant.
Increased anxiety around Crohn's symptoms with COVID-19
Then the pandemic began. COVID-19 intensified my anxiety about life and health, but more specifically about my Crohn's disease.
What would regular doctors' appointments look like? How would I continue getting my infusions? What about labs? And what would happen if, unfortunately, I flared?
I put plans into place. I talked to my doctors and my husband and our family. I did as much as I could to imagine how I would take care of my struggling health in the midst of a worldwide shutdown. And I felt pretty uneasy about how my IBD would stand up to the stress of new living conditions, social conditions, work conditions, and more.
Increased symptoms and complications with stress
Surprisingly, I lasted a few months in pandemic life with good health. And then one morning in June, I realized that it had been 4 days in a row of burning, urgent, repetitive bowel movements, cramping, nausea, and abdominal pain.
I messaged my doctor. We started our plan - she ordered outpatient labs, we increased oral PRN medications I had on hand, and she ordered IV fluids to be delivered by my home health pharmacy.
Note: one of the biggest blessings of pandemic healthcare for me, personally, has been the combination of home healthcare and having a power port. Obviously, one or both of these may not be feasible or practical (or approved by insurance) for other patients and I recognize my privilege in having the option, AND I encourage you to explore your benefits for home healthcare if you are interested in learning more.
A week went by. My labs weren’t conclusive enough. The meds and fluids weren’t enough to mitigate my symptoms. So, then my doctor ordered some outpatient testing - stool samples and CT scans.
How COVID-19 changed my medical care for Crohn's
As I wait for the results, and a plan from my doctor, I’ve been thinking about this experience and how it has differed for me from the past. Because of COVID-19, I did not go in to see my doctor when my symptoms started, which probably would’ve prompted immediate labs and stool samples at a minimum.
I did not walk into the ER when my pain skyrocketed, which I probably would’ve done in the past. I did not think about being admitted to the hospital for fluids and medication and testing, because to those of us that are immunocompromised, the hospital is currently a last resort.
I also have been thinking about how much I’ve grown as a patient in the last decade. How much better educated I am about my disease, my treatment options, managing my healthcare options, asking questions, and tolerating the unknown than I was even just a few years back.
I have become, in so many ways, a self-sufficient patient, turning to the healthcare system only when I need diagnostics and evaluation of treatment plans. And that, my friends, feels encouraging and empowering and it makes me so grateful for the opportunity to support you on your own journeys to that place.
What is your comfort level disclosing your IBD to your employer?