Awaiting a colonoscopy in a Tri-Cities, Wash., emergency room was the last place Angie Neal expected to find herself. The 33-year-old Olympia native was the epitome of health: she exercised regularly, ate healthy foods and had never been overweight. She even held a degree in Food Science and Human Nutrition from Washington State University. But when a concerned gastroenterologist ordered the additional exam, she knew it was serious.
“It was shocking,” Angie says of the test results. “I had never heard of inflammatory bowel disease (IBD) or, my official diagnosis, ulcerative colitis (UC).”
With her characteristically dry humor, Angie adds, “I receive the Merriam Webster Word of the Day by email every morning. I’ll never forget the word that day was eupeptic which means: of, relating to, or having good digestion.”
At the time of her diagnosis, Angie was working in the toxicology department of the Pacific Northwest National Laboratory. Generally unfamiliar with UC, she began to read up on her condition and explore the limited available online resources. Her prescribed treatment was a daily anti-inflammatory enema containing mesalamine.
For nearly a year, Angie was symptom free ̶ the mesalamine having put her condition into remission. Then, unexpectedly, she experienced a flare with new, and much worse, symptoms. But even after weeks of increased enemas and steroids, her symptoms worsened.
Angie remembers, “I had continued to make it to work but my coworkers were actually scared for me. I was severely dehydrated and stopped counting after 16 trips to the bathroom in one night. I lived alone at the time. And the night before I was finally admitted to the hospital, I was afraid to go to sleep for fear of dying.”
Over the next few months, Angie’s body was ravaged by her UC. On multiple occasions she was admitted to the hospital for weeks at a time where she received blood transfusion and IV fluids to combat her dehydration. Her new treatment regimen required taking 16 pills each day. For much of the next year, with her symptoms back in remission, Angie worked to rebuild her body. But, as is the nature of this cyclical disease, she eventually experienced another severe flare.
Unbeknownst to her, Angie’s gastroenterologist had been communicating about her condition with doctors at Virginia Mason. Ultimately, he presented Angie with two options: she could begin receiving a monthly IV infusion of a drug called Remicade, or she could travel to Seattle to have her colon surgically removed. It was a difficult decision that, in the absence of a clinical trial, many UC patients must make.
“I had to think long and hard about it,” Angie says. “I felt I just couldn’t live through another flare like that again.” Ultimately, she chose the surgery, adding, “it was an undertaking.”
Angie’s procedure, called a colectomy, involved two major surgeries spread out over two months. The first operation removed her entire large intestine, connected her small intestine to her rectum and created a temporary ostomy to divert waste until everything healed. Two months later, in the second operation, her ostomy was removed. It was during this time that Angie learned about the clinical research being conducted at Virginia Mason and Benaroya Research Institute (BRI) and joined the BRI Biorepository.
The Inflammatory Bowel Disease Biorepository is a confidential list of people with inflammatory bowel diseases (IBD), such as Crohn's disease and ulcerative colitis, who are willing to donate a blood sample and provide health information to support scientific research. Donated samples and personal and family health information are used by scientists in the laboratory and in analysis to help researchers better understand the causes and long-term health effects of gastrointestinal and immune-mediated diseases, as well as to explore better treatment options that can be used by physicians in patient care.
Angie’s recovery was long and challenging requiring her to establish a completely ‘new normal.’ With the support of her Virginia Mason team, she was successfully able to modify her hydration, diet and exercise routine in a way that worked for her. In fact, Angie was so impressed by her Virginia Mason experience she moved to Seattle with the hope of working there. And in 2016, she joined the Digestive Disease Institute at Virginia Mason as a clinical research coordinator on the IBD research team.
“Having lived the experience, my work is both interesting and personally meaningful,” Angie says. “I know exactly what my patients are going through and they truly appreciate that I’ve been there.” She adds, “And while it was the right choice for me, I understand most of my patients are trying to avoid colectomy. That’s why it is a privilege to be part of research I’m passionate about at an institute that is so highly regarded.”
Ten years after her diagnosis, Angie is thriving. Beyond her clinical research work, she wants to be the IBD resource and patient advocate she never had. “All I ever wanted was to talk with someone who had lived through this,” she remembers. So, for the last five years she has volunteered with the Crohn’s and Colitis Foundation as a mentor for newly diagnosed patients.
Her best advice to a new patient?
“Stay positive and don’t harbor resentment. Take comfort in knowing you can do the things you want, but they may have to modified now. You can maintain control of your life. And, yes, you can do this.”
April 12, 2018
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