In the Patient’s Shoes: A Medical Student’s Experience with Crohn’s disease
Michael Germansky UCD School of Medicine and Medical Science, University College Dublin, Belfield, Dublin 4, Ireland
The journey to becoming a doctor begins in the classroom. You begin by attending lectures and reading through piles of textbooks, hoping that you will retain even a portion of the information. As you move into the upper years, you explore pathology and realise how vulnerable the human body is to a vast spectrum of diseases. I often found myself wondering how I could be sitting in class or at home and feel perfectly healthy. It is not uncommon for lecturers to speak to us about various illnesses and then tell us that “one in four” of us in the audience will develop cancer or another serious disease within the course of our lifetimes. From experience, I know that as medical students, we tend to brush off such statistics. The notion that “it won’t happen to me” seems to circulate through everyone’s mind. I was no different. I was like many of my peers, who too often took their own health for granted.
As a 23-year-old student, my mind was focused only on my studies, my friends and my future career. More often than not, I neglected my own health and passed off illnesses I experienced as transient. This is a story, not about my journey as a student doctor, but as a patient within the healthcare system. I hope to give you a unique insight into the emotional toll and struggles that comes with being a patient, as well as the investigative process used to reach a diagnosis.
It began with severe abdominal pain during the winter exam session of 2015. The pain – a burning, distended, deep-seated pain – was not new to me. In previous years a similar pain had afflicted me, but it was fleeting. This time, it was different. The pain never went away. Granted, I was concerned but instead of seeking help immediately, I focused on my exams. Studying was not easy; the pain had no pattern and would sporadically worsen and subside without warning. A week prior to my first exam, I realised my legs were swollen and had pitting oedema. I saw a GP that day but she passed it off as something idiopathic. I was unconvinced, but with a week until exams I endured the added level of excruciating pain and continued to study.
When exams were conquered, I focused my attention on my health. After seeing a dermatologist, the lesions on my legs were thought to be due to the rare condition erythema nodosum. However at this point, no physician knew what relation that had to my poorly localised abdominal pains. First my GP treated me for irritable bowel syndrome with no improvement. Then they tried to treat for a duodenal ulcer, but again to no avail. A month later, I attended a gastroenterology clinic in St Vincent’s Hospital. They ordered a variety of blood and faecal tests as well as CT imaging studies. A few weeks later the radiology report was in and showed an area of small bowel thickening and enlarged mesenteric lymph nodes in the same region. This is when I began to worry. Was it a lymphoma? Would I be able to continue with medical school? Would everything I had been working towards come to an end?
My worries became my family’s worries. To make matters worse, they had the added stress of being unable to physically be here for me since they lived overseas, in Toronto, Canada. They tried their best to hold back the tears when we spoke on Skype. Their reassurance that “everything is going to fine” and the “doctors will get you feeling better in no time” didn't make me feel better; rather, it made me feel vulnerable. My health was now in the hands of doctors. Don’t get me wrong, I know how well doctors are trained, but the notion that I, the patient, would have to rely on a team of complete strangers to manage my health was unsettling. What if they miss something? What if they don’t order the right tests? What if they can’t make me better? For me, the feeling of hopelessness reigned in moments like these.
Shortly after the imaging results, the doctors decided that the only option was to refer me over to the surgery team for a diagnostic laparoscopy. This was to take place in September of 2016. As a student, I had always been interested in surgery and took every opportunity to scrub into theatre to watch. Having said that, I was more nervous than I had ever been before. I had never thought that I would be under the knife, especially not now and this far from home. The summer leading up to my surgery was difficult. I not only had the image of me on the operating table ingrained into my mind, but I also had to study for the first part of the United States Medical Licensure Exam. I spent my summer studying 6 to 8 hours a day while enduring the pain of which the origin was still unknown.
Soon September arrived and my surgery was just around the corner. On the day of the surgery, I arrived at the surgical reception area. I changed into a gown and lay on a bed awaiting my operation. My anxiety levels were high. I didn’t know what time the operation would be as I was told that the surgeon would decide on the order of his surgeries for the day that morning. As it turned out, I was the first. After being wheeled down to the operating theatre area, the anaesthetist inserted a cannula for intravenous anaesthetic access and explained the process of general anaesthesia. Then, I was brought into the operating room. A mask was placed over my face and I took deep breaths and counted backwards from 10 as the anaesthetics were administered. Before I reached 5, I was unconscious. The next thing I remember was waking up in the post-anaesthesia care unit. Once the nurses deemed my vital signs to be adequate, I was brought to my inpatient bed.
Later that day, the surgeon came to speak with me. He said “I have some news”. Before he continued, I immediately thought the worst; was it a lymphoma? Do I have cancer? He told me that the good news was that the biopsy of some severely enlarged lymph nodes was negative for lymphoma or neoplasm. I was relieved. He then explained that I have Crohn’s disease, an inflammatory bowel disease. As a medical student, I knew a lot about Crohn’s disease; I knew it was due to an abnormal Th1 mediated immune response to gut bacteria causing transmural bowel inflammation. Knowing about a disease is one thing, but experiencing it is a different ballgame. With this diagnosis, I knew that many blood tests, faecal tests and a plethora of imaging modalities lay ahead. The road toward staging and treating my disease was about to begin and I wasn’t sure what to expect.
So far, I have had more blood tests then I can count and have had an MRI and CT scan of my abdomen and pelvis. Currently, I am waiting on more procedures and ultimately a treatment plan that will help me to keep this lifelong illness at bay. To say it has been a struggle is an understatement. It has taken over 10 months just to arrive at a working diagnosis. Despite the struggle, I am optimistic about the future and about my future as a physician who will be able to care for and comfort other people with diseases similar to my own.
To all future healthcare professionals, and to those who are not in the healthcare field, I hope this article has given you more insight into the patient experience. It is vital to recognise and acknowledge the emotional toll that a patient endures from the onset of symptoms and throughout the diagnostic testing process. From the stress of undergoing testing, to waiting to be told what the results mean for them; results that can change the course of one’s life. This is an unconscionably difficult time in a person’s life and it is important to understand that. I have a better understanding of this now, which is something I will keep in mind when dealing with patients throughout the course of my future career.
Medical school teaches us about the importance of empathy through lectures and examinations. The problem is that empathy is not easily taught. It is a skill acquired by listening to a patient’s story and understanding their emotional burdens. I had the opportunity, albeit unpleasant, to literally put myself in the patient’s shoes. I hope none of you will ever be in that position, but I do hope that you have learned something about the importance of the medical process and more importantly, the impact of that process, on a patient’s life.
I would like to thank my family, friends and peers for their ongoing support. As well I would like to thank the staff at SVUH who, through their display of exemplary professionalism and due diligence, were able to guide me through this difficult time in my life and arrive at a diagnosis and treatment plan in a timely manner. I would further like to commend the SVUH staff for their compassionate care and for practicing medicine to the highest of standards.