She’s an ICU nurse who’s been braving COVID since the start of the pandemic and she has quite the story to tell. Abigail Norville, of St. Louis, is not only on the frontlines as a healthcare worker, but she also has Crohn’s disease and is immunocompromised from her medication. In mid-November, Abigail tested positive for COVID. This week on Lights, Camera, Crohn’s, she shares her unique journey through the pandemic and what she wants others to know.

Abigail’s IBD diagnosis story

Diagnosed with Crohn’s at age 16 in 2013, she remembers falling asleep in class everyday and experiencing abdominal pain that would keep her up at night. Teachers started giving her detentions for sleeping in class. After a few detentions, she started excusing herself from class so she could go into the bathroom, set a 10-minute alarm on her phone, and lay her head against the stall wall so she could rest and not get in trouble. Along with that, she dropped 32 pounds in one month.

At the start of her patient journey, Abigail was treated with steroids such as prednisone and budesonide, without a maintenance therapy in place. Before starting biologics, she was also put on Apriso, Lialda, Asacol, and Pentasa. When these medications didn’t cut it, she started Remicade treatments.

“The infliximab infusions greatly improved the disease presence in my intestines, but I was unfortunately experiencing new chronic joint pain, extreme fatigue, and skin rashes. At the time I assumed these were side effects from treatments. I told myself to “pick my poison” and I could keep my intestines or experience these unpleasant symptoms, so I of course continued with the infliximab infusions,” said Abigail.

Unfortunately, after a few years, a rheumatologist diagnosed her with drug induced lupus (infliximab induced lupus), and she was immediately taken off Remicade.

She started Entyvio in early 2020 while working in a COVID ICU and had to hold off the infusions due to the nature of the loading doses. Fast forward to today (Dec. 2020), and she has now finished her loading doses, in conjunction with prednisone and sulfasalazine daily.

Since diagnosis, Abigail has endured three surgeries and countless scopes.

Working in the ICU during COVID while taking on Crohn’s

Abigail currently works in a medical/pulmonary ICU and treats patients with multiple life-threatening comorbidities. Unfortunately for her, this is her first job. She’s a brand-new ICU nurse. While she could have thrown all her years of education and desire to be a nurse out the window to avoid the pandemic, she feels being a nurse is more than a job, it’s an obligation. Her GI told her she was his first patient to request a note to “continue to work” rather than asking for a note to stay home.

“When the pandemic started, many of us thought this would last a few months and we could return to the previous way of life by the end of the year. I remember having a conference call on a Sunday night with my manager stating we were the official COVID unit. I didn’t realize the depth of this pandemic until every nurse and physician stood in a circle one day and agreed that there was no emergency in a pandemic, and we were to always protect ourselves with PPE. Everybody around me was scared but… what were we to do? This was our job. We have bills to pay,” said Abigail.

Abigail recalls how her anxiety regarding her own immunocompromised conditions worsened as she witnessed her patients struggle with COVID and learned of nurses moving into hotels and dorm rooms to protect their families.

“My physician advised me to find a new job, but this was my first nursing job, and I did not want to burn a bridge early in my career. When we intubated my first COVID patient for her to be placed on a ventilator, she made me agree to call her daughter and repeatedly told me she was scared. When this patient did not make it and we continued to see death from COVID, I was worrying myself sick over my own health. The nurses around me were also scared, were quarantining from their families, and I felt out of place saying I needed to work elsewhere when they were also risking their lives.”

Ultimately, Abigail’s GI said she could hold off on receiving her loading doses of Entyvio, but that she would need to start steroids, again. She worked in the COVID unit, taking high dose steroids. Despite this, she was losing weight from the physical labor of working the COVID floor and the worry she felt about how her Crohn’s would act up if she ate while at work.

“I was working and not eating to ensure I did not have to leave a COVID room abruptly to be sick in the bathroom, when most patients were extremely unstable. Time did not permit you to think of your own health when your patient was dying. There were times I found myself in a COVID room for hours and would come out of the room sweating through my scrubs, wanting to pass out, and reminding myself I really needed to eat some food. My Crohn’s symptoms were worsening and my inability to care for myself was impacting the severity of these symptoms. I told myself I had to find a new job that allowed me to start my Entyvio treatments, even if I did not want to. If I do not care for myself, I cannot care for my patients.”

Abigail ended up switching jobs in June and started working at a different St. Louis hospital. Unfortunately, dodging the bullet of treating COVID patients was short-lived in the ICU and she inevitably was back to square one. At this point, she made the decision to start her Entyvio loading doses. She personally felt that no matter what unit she was working on, she was at risk working as a nurse.

Testing positive for COVID

Abigail tested positive for COVID in November. She wasn’t too surprised. Her symptoms pointed right to it. She was scared her chronic conditions would impact how severe her case would be and says she was anxious throughout her quarantine. She landed in the ER once, but luckily was ok and made a full recovery.

“The pain and suffering are real, whether you experience it or not. Watching people die with no loved ones present is happening every day. It’s on us to realize our lives are not the center of the universe. Just because you are not experiencing the effects of the virus, doesn’t mean it is not serious. I don’t know how to explain for people they should care for other people.”

How IBD shaped her career path

Abigail says she’s unsure if she would have ever become a nurse if she did not have IBD.

“My time as a patient has allowed me to understand what it is like to be the patient in a hospital bed, giving me a deep sense of empathy. While I have never found myself in the condition most of my critically ill patients are in, I remind myself that it could be me or a loved one in this hospital bed every day.”

Abigail told herself after her Crohn’s diagnosis that she may have Crohn’s disease, but it does not have her.

“There have been moments where I felt the disease definitely owned me, but ultimately reminding myself that this disease does not define who I am creates a sense of motivation to become who I want despite my health obstacles.”

As of now, Abigail has not received the COVID vaccine as a frontline ICU nurse in St. Louis. She’s anxious to get her first dose as the pandemic battle rages on.