What They Really Need to Teach Medical Students About Ulcerative Colitis

Since my ulcerative colitis (UC) diagnosis in 2001, I’ve been extremely fortunate to have the best gastroenterologists (GIs) and care teams. Many friends have told me how it’s difficult to match with a doctor that works with you, not against you. I’m lucky to say that I’ve rarely experienced that problem, and as the years pass, doctors in general seem to be better versed in the non-clinical sides of chronic illness. After a recent bone density scan, I was handed a flier about the role stress can play in UC management; I nearly fell out of my chair. I’ve lived with UC for 22 years, and that was the first time a medical expert had proactively brought up stress with me. 

I don’t live under the illusion that specialized doctors, or any general practitioner, should be able to serve as a chronic illness expert, therapist, nutritionist, life coach, and best friend all at once. Despite my biggest desire to have my GI serve as all of those things, that’s simply not their job. Their job is to be one part of my overall disease management, but their part just happens to be the focal point and the one role that most people ensure that you have filled. It’s “easier,” so to speak, to confirm someone living with inflammatory bowel disease (IBD) has a good GI in their corner. It’s not as intuitive to encourage them to also work with a therapist or another type of expert.

That said, I believe the general population going through medical school for diseases like IBD do need to be aware of the other components of the condition — not just what it looks like on the big screen during a colonoscopy. As a society, we’re getting there; I’ve witnessed it and experienced it firsthand. I’ve never gone through medical school myself, but if I could wave a magic wand and ensure all future GIs knew seven facts outside of clinical remission and medical terms, it would be the following things:

1.   The true impact of stress on the gut

I’ll be the first to admit: I know there’s an impact, but I don’t know the actual medical facts behind the impact. Nevertheless, this should be part of the regular check-in discussion with any person living with IBD. It’s as important as pressing on the stomach to check for pain or lumps.

1.   The emotional toll of a diagnosis

Delivery can be everything when telling someone they will live with a condition for the rest of their life. Medical school needs to incorporate “bedside manner” trainings into their curriculum, as this skill can make or break a doctor-patient relationship. 

1.  The importance of movement

One of the first things I share as part of my UC journey is the importance of exercise. Not only does it assist with managing the above two things, but it’s also good for your body (duh!). I consider this to be the thread that holds my disease management together; if I remove it, the rest falls apart. Doctors are wonderful when prescriptions are communicated as only one part of self-care because they aren’t the only and solo way to live with IBD.

1.   The unpredictability of a flareup

Do medical students specializing in gastrointestinal issues “shadow” actual people living in a flare? I honestly have no idea, but they should, and they should do it from the perspective of a loved one, not a doctor. Witness the ups and downs from an emotional angle, not a medical one.

1.   The whole-person approach

Before we moved to Boise, Idaho, one of the last talks I had with my GI in San Diego was how the literature was shifting away from blanket care for all and more toward individualized care for the single patient. I hope this not only continues to be an in-practice pattern, but it also becomes a trickle-down effect from the onset of medical school.

1.   The ability to recognize when more support is needed

As I mentioned before, GIs can’t be the catchall professional support for someone — but they should have enough knowledge and awareness to know when someone needs more support. I’ve heard so many stories of friends being “written off” as being some sort of way, and their doctor doesn’t take the extra step to write a referral or check in beyond the “checklist” for a 30-minute appointment. This should be required of all doctors. 

1.   The weight debate

Steroids can throw bodies out of flux, and with that comes body image obstacles … at least for me. I got rid of all photos of myself while on prednisone; it wasn’t me, and I couldn’t look at them. However, no doctor at that time talked to me about the body image aspect of that time period. I was simply told my weight may fluctuate (which was the understatement of that year). Discussing weight is discussing body image as much as it is discussing pounds.

What would you add to this list? If you’re a current medical student or professional specializing in GI conditions, sound off in the comments about how the above seven things are, in fact, a part of medical school.