Explaining IBD to a Jury of Our Peers

I was contacted several weeks ago by classmate who shared with me that they too had IBD, specifically Ulcerative Colitis (UC). As fellow IBD-ers we quickly befriended one another and came up with the idea of trying to arrange a patient panel to discuss life with IBD during our GI block. We enlisted a third student with IBD (UC) and decided to write a letter to our deans about why a patient panel on IBD would be of interest to the class. We were compelled to push for this panel because the three of us know how profoundly IBD has affected our lives, and we know that we’re not alone in that. We felt like if we were able to share our emotions and express the anger and frustration we had all felt toward physicians we could make IBD really stick in the minds of these future doctors so that someday they wouldn’t miss a diagnosis of IBD.

Let me back up and first explain why we felt like a patient panel would have a more lasting effect then lecture alone. Here was the schedule for first year medical students (M1) on 4/1/15 at my medical school. This is basically an average day for a medical student however we rarely spend so much time on one group of diseases.

8-9 am: Congenital GI Disorders

9-12: Inflammatory Bowel Disease

12-1: Voluntary IBD Patient Panel (Not serving lunch? Don’t expect an audience)

1-2:30: Approach to Chronic Disease

3-4:45 pm: Hip and Lower Extremities Workshop

Go ahead and fill the time until about 11 pm or midnight with studying the material of the day, including a quick dinner and possibly exercising break, repeat that Monday-Friday and that’s medical school. A lot of people vociferously complain about the work load but we all actually love it, or at least I do. Maybe I’m strange, but when I’m back (January ‘16) I know that I will never take another day of class for granted. This being said, all we can do is try to digest the material of each day and get ready for tomorrows volley. You had better not fall behind.

Unfortunately under this unremitting barrage of information it is easy to overlook the impact carrying these diagnoses has on patients and their loved ones. Taking time to pause and really ponder the social, psychological and financial implications of chronic disease is emotionally grueling and wears you out. We study some of the worst things that can happen to people who often did nothing to deserve it, so personally I think that spending disproportionate amounts of time thinking about these weighty subjects is not healthy. I don’t like to admit that, but can you blame us?

Here’s where the patient panel comes in. These are semi regular sessions where a few patients with a specific or related conditions describe their medical histories and answer questions about THEIR biggest concerns to medical students. The sessions are not designed to increase our book smarts, we spend countless hours doing that already, rather they’re more nuanced lessons on life designed to reinvigorate the humanism that spurred us to apply to medical school. We slow down and we listen. We listen to patient’s intimate stories, their health related priorities and their fears. The panels give a face to a disease. They remind us of the gravity of all the biochemical pathways that we study. Patient panels teach us how to navigate the difficult waters of life with people who have incurable conditions.

I can tell you from observing several such panels as a student that they are powerful and play an irreplaceable part of our early training. I have seen several students tear up and cry during these classes which is nothing to look down on, the stories can be difficult to swallow. Now I can also tell you that being the one in the front of that room explaining to a jury of your peers your innermost thoughts is not easy. In fact it’s far more difficult than attending as a student and knowing there may be no medical options for the person in front of you. So before I continue I feel obliged to say thank you to all the patients who have selflessly volunteered to share their innermost concerns to better my education. I must also thank my classmate and the pharmacy student who stood with me as we explained life with IBD to our friends. I would not have been able to stand there alone, it was difficult.

How did we pitch this to the faculty? We briefly described the relatively high prevalence of IBD and the fact that physicians of many specialties contribute to the management of those with IBD. We know from our own experiences that patients with IBD are seen by pediatricians, internists, radiologists, dermatologists, psychiatrists, surgeons (general, trauma, colorectal), emergency medicine, rheumatologists, oncologists and the list goes on. Additionally, patients with Crohn’s and Ulcerative Colitis can be frustrating to manage because symptoms are transient seemingly coming and going randomly. We all signed the letter and sent it to the deans…it worked and we were permitted to hold a 1 hour patient panel during lunch the day that we were leaning about IBD.

Being relegated to a lunch lecture means that you are competing with talks by hot shot physicians and scientists in their respective specialties. Those daily talks almost always serve free lunch to med students so I wasn’t really expecting much of an audience. The day of the talk came and we went to the big lecture hall to collect our thoughts and make sure the mics were working. About 100 students and the head of the GI block ended up streaming in. I was very surprised, this was far more students than I expected.

10 minutes before other students started showing up.

10 minutes before other students started showing up.

We shared our medical histories, our feelings toward our diagnosis, the financial implications of medications used to treat IBD and our fears going forward. That took about 40 minutes so we opened the last 20 minutes to questions. I personally received several thought provoking questions, some of which I had never considered. I will quickly summarize these here and later do separate posts answering each: was there anything my pediatrician could have done to recognize the abdominal pain I was going to great lengths to hide, had our GI doctors referred us to nutritionists who had experience with IBD, had our GI docs referred us to psychiatrists specializing in coping with chronic disease, what was the reaction we had to our diagnosis, were there any special diets to help patients with IBD, how did we value support systems, how do we stay positive when there is no cure? There were several other questions but I think that overall our classmates and friends had no idea that life with IBD is like this

This panel exceeded my expectations not only in attendance but also the effect it had on my classmates and myself. Several of my friends were tearing up/crying (including myself when I posed the question to the room of what they thought would have happened had my roommates not been in the apartment when I perforated my bowel). This was the first time I truly opened up and discussed my medical history in detail with anyone who I know personally face to face. I think that was an important step toward accepting life with IBD. I have been having symptoms of Crohn’s for over 10 years, these symptoms helped shape who I am so shouldn’t I have accepted it by now? If you know anything about IBD then you wouldn’t have to ask that question. IBD changes all the time and just a few months ago I was functional medical student and no one would have guessed I am sick. Today I have about an 8-10 inch scar down my abdomen and worry every day when I leave my house that my ileostomy bag will fall off in public. So I think that learning to accept and healthily deal with IBD (or any chronic condition) is a lifelong process that matures as your disease changes. I could go on, but the bottom line is that if those of us with IBD continue to try and hide what our days are like and what we really care about then how should we expect physicians (least of all future physicians) to understand that we have very real concerns besides what our CRP value is today.

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