Coping | Information | Uncategorized
Eliza hiking in the White Mountains in New Hampshire.
A friend recently reached out to me looking for advice: After multiple specialist consults and misdiagnoses, she was diagnosed with ulcerative colitis (UC) and was feeling overwhelmed by the news. As a healthcare professional herself, she understood the facts about UC but was struggling to understand where her experience fit within the spectrum of UC symptoms. Was her condition severe enough to justify the medications her gastroenterologist was considering? She’d started a first-line medication already, and stepping up therapy would mean adding a new medication with an impressively long list of potential side effects. After all, she’d been living with the symptoms for years already.
My friend’s questions were all too familiar, and I was thankful that she found me at this moment in my own journey with UC. I learned through experience that it was possible to become desensitized to chronic symptoms, to question whether I was sick enough to take a chance on a new treatment when I knew I could survive without it. It took years for me to see the gulf between surviving and thriving, and to understand how coping with my symptoms became a barrier to healing.
I was diagnosed with UC in 2005, a couple of weeks after graduating from high school and after the rapid onset of a flare that nearly landed me in the hospital. I spent the first month of that summer on my couch, making up to twenty bathroom trips a day and feeling too weak to do much else. I subsisted on toaster waffles, novels, televised baseball games, and visits from family while quietly considering if and how I would manage this on my own when I left home for college that August. I read about UC flares and remissions and wondered whether I would feel “normal” again someday.
My symptoms gradually improved with first-line medication, and I felt well enough to start school in the fall, but I was by no means in remission. UC became a defining feature of my college experience as I struggled to navigate undergraduate life with a new chronic illness. I didn’t know how or when to talk to my roommate or new friends about my symptoms, woke up very early in the mornings to ensure I’d have privacy using my dorm’s semi-private restrooms, felt ashamed leaving the dining hall to use the restroom multiple times during a meal and lived in fear of losing control of my bowels.
During my freshman year, I did what I could to manage my UC: I kept my doctor’s appointments, took my medication four times a day, and learned to advocate for myself when I needed to request housing accommodations for a private restroom. Nevertheless, my symptoms were poorly controlled, and toward the end of the academic year, a colonoscopy confirmed that I had inflammation throughout my colon. I started on a month-long course of steroids, then transitioned to azathioprine at the beginning of my sophomore year. Again, there was no remission, but my symptoms improved with my immune system suppressed.
My attitude toward treatment started to shift around that time. After living with my symptoms for well over a year, I was losing touch with what it meant to truly feel well. Mild symptoms had come to seem like an acceptable new baseline, and I was nervous about the next treatment options to consider. Biologics for IBD were still relatively new, and injectable medication seemed like a dramatic step given that I was better even if I wasn’t well. Whenever my gastroenterologist offered more intensive treatment, I downplayed the impact of my symptoms and passed on starting a new medication.
I continued in this way for nearly a decade. Through graduate school, dating, travel, and the early years of my career as a nurse practitioner, I lived with my symptoms and the stress that came with them. My gastroenterologists adjusted my existing medications here and there, but I refused new medication until weeks before my wedding in 2014. I was eager to start a family and recognized that I needed to control my UC to make pregnancy as safe as possible. I had my first Remicade infusion three days before my wedding. I walked down the aisle with a dramatically bruised left arm after several failed attempts to start my IV in a freezing-cold hospital infusion center. My symptoms improved a little after starting Remicade, but remission never came. I got pregnant while still in a mild flare, and my symptoms neither improved nor worsened much during the pregnancy or postpartum. After about a year and a half, I stopped the Remicade due to lack of benefit. Discouraged, I chose yet again to live with my symptoms rather than experiment with other treatments.
My second pregnancy turned out to be the treatment I needed but couldn’t have predicted. By the second trimester, I found myself in my first sustained remission since diagnosis – a surprising spontaneous remission that would last more than four years. And it was only then that I truly understood the consequences of my earlier hesitation to step up treatment. In finally feeling well, I understood how sick I had been and discovered an ease of daily living that I’d never known in my adult life. I saw my gastroenterologist, took my medications, and went for screening colonoscopies, but my UC was otherwise in the background. I no longer needed to schedule plans around my symptoms or to prepare for an emergency when on the go. It was possible to forget that I had UC in between infusion appointments and routine doctor’s appointments. And I asked myself: Could I have experienced this freedom sooner if I hadn’t given up trying? If I hadn’t been willing to settle for my symptoms being “better than before” when my doctors offered additional treatment?
After four years of remission, my doctor and I agreed to try stepping down my treatment regimen. I continued to feel well for months after stopping a long-term medication, but I had active disease on a routine colonoscopy and knew that it was a matter of time until symptoms followed. When my gastroenterologist recommended that I start a newer biologic, I agreed immediately. Knowing what it meant to feel healthy, I wasn’t willing to risk a return to the life I lived during my late teens and twenties. Two symptom-free years after starting a new medication, I’m confident that I made the right decision.
And so, my advice to my newly diagnosed friend: All symptoms are symptoms, and everyone deserves to feel well. Take a chance on healing to understand what’s possible. Living with chronic symptoms once distorted my sense of what true well-being could look like and how I thought about the risks and benefits of treatment – but I know now that the treatment is rarely worse than the disease, even if the journey to better health is not a straight path. My symptoms will likely return someday, and I’ll be prepared to defend the well-being I’ve discovered in remission when that time comes.
Eliza Gollub was diagnosed with ulcerative colitis weeks after graduating from high school in 2005. Living with IBD inspired Eliza to pursue a career as a nurse practitioner (NP) after studying community health as an undergraduate. Eliza has been practicing as an NP for over a decade and has a particular interest in developing tools that help healthcare providers communicate with their patients in a clear and compassionate way. Eliza is a parent of two who loves getting up before the sun, spending time outdoors, and reading whenever she can find a free minute.