In the past 11 years with ulcerative colitis (UC), I’ve had three different gastroenterologists (GIs). Or as I joke, I have “graduated” from three different doctors. As I look back on each experience, I realize how it affected my care, understanding of the disease, and my overall well-being.
The first GI that I saw in 2011 was a kind, seasoned, old-fashioned doctor. He didn’t have an actual examination room. A large, wooden desk hid his body, and he had a yellow legal pad in front of him. I appreciated that he directly addressed me, but the appointment felt like an interview. He was quite nonchalant about my symptoms, as if I was talking about the weather.
I was starting to think that I may have been overreacting about my symptoms. Maybe the bleeding and diarrhea were normal? I couldn’t figure out if he was nonchalant because my symptoms were classic “textbook” examples, or that he didn’t want to overwhelm me. As a 21-year-old, that was my first serious medical appointment. I assumed that’s how all standard medical visits went. It didn’t occur to me to think otherwise.
Three years later, I was under the care of a female doctor at a specialty practice for digestive diseases. I felt very comfortable with her. I’d been looking for a female provider for my first GI, but my primary care doctor thought my situation was too urgent for me to be selective. While her office was more tech-savvy than the former office, I didn’t mind that she was typing away on her computer as I provided my medical history. She took the time to acknowledge my concerns and validate how I was feeling. I definitely felt more heard with her.
Of course, it wasn’t all picture-perfect. During my care there, management may have changed, and I was regularly seeing new staff. My appointments were being canceled at the last minute (appointments that I really needed). I also had trouble getting refills for my medications, and my messages weren’t getting to the doctor. Once, I went without medication for 3 months, and it was a biologic treatment. You can’t suddenly stop taking a biologic because you could develop antibodies, and that means you can’t go back on that medication.
I consider myself a fairly patient person, but I suddenly felt broken. I couldn’t be a patient where I wasn’t treated as a patient. I really liked the doctor that took care of me for 5 years. She did a wonderful job. But there was too much miscommunication on the administrative level that I didn’t think was appropriate for a patient to deal with constantly.
For the past 3 years, I have been with a fantastic GI and a stellar staff. My GI provider is an IBD specialist, which means that she treats people who have IBD: ulcerative colitis, indeterminate colitis, or Crohn’s disease. Her staff consists of MAs, nurses, and pharmacists. Every few months, a member from her team will reach out and schedule an appointment with me to address current needs with my health and any questions I may have for the provider. For example, 2 months ago, the pharmacist on her team reached out to me to reconcile my current and past medications. I spent a total of 20 minutes with her. Yes, 20 minutes! She went through each medication with me, asked how I was doing on them, and if there were any new symptoms I noticed or wanted to report.
It took a long time to get to this point in my care, but I do finally feel heard and validated. My symptoms are not downplayed or minimized. Medications are clearly explained to me, and I know what to anticipate without having to go to the internet for further research. I feel comfortable enough during my appointments that I don’t need to seek out information elsewhere. In the past 3 years, my doctor makes a note to always ask me about my fatigue -- my biggest struggle with IBD -- and how well I’m coping with it. While my fatigue hasn’t improved, I still appreciate that she takes the time to ask that question.
She doesn’t say, “Well, your blood work looks great, it doesn’t really explain your fatigue.” Instead, she emphasizes, “We will figure it out and I’m always happy to hear any ideas from you.” It’s that kind of response that makes a huge difference in a patient’s life. I’m so grateful that she’s involved in my care. I appreciate her and her staff even more because of the early challenges I experienced in my IBD care. She is the kind of doctor that I aspire to be and have learned so much from our interactions, as a patient and as a curious learner.
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