How to deliver great care to pediatric Crohn’s and IBD patients

Denial was the best way to describe my relationship with Crohn’s disease after my diagnosis at the age of ten and for nearly a decade thereafter. Eventually, I was able to turn my struggles with Crohn’s disease into a positive force in my life. Along the way, I learned much about the patient-physician relationship. Below is my advice on treating pediatric Crohn’s/IBD patients based on my own experience navigating Crohn’s as a child and teenager, as well as a short explainer on Crohn’s and what it’s like to live with it.

Crohn’s disease explained

Inflammatory Bowel Disease (IBD) affects over 1.6 million Americans. Crohn’s disease, a major category of IBD, is a chronic inflammatory condition of the gastrointestinal tract and may affect any part from the oral cavity to the anus. Typically, patients present with symptoms in their 20s-30s, but they can also present in infancy and later on in adulthood. Overall, the incidence of IBD has been increasing over the past few decades.

Symptoms can range from mild stomachaches to severe intestinal inflammation requiring bowel resection surgery. Most commonly, symptoms are abdominal pain, diarrhea, and weight loss. Patients can also experience extra-intestinal manifestations of the disease; for example, I personally have experienced abscesses, fistulas, and erythema nodosum.

Crohn’s disease is an autoimmune disease, therefore medical treatment is aimed at suppressing the host’s immune response. This leaves patients immunocompromised and more vulnerable to infections. In the treatment of pediatric patients, it is common to manipulate diet to induce and maintain remission. There are many diets, including the FODMAP diet, Specific Carbohydrate Diet (the diet I currently adhere to), or formula-based diet with exclusive enteral nutrition.

Why Crohn’s is so frustrating

“But you don’t look sick!” While there can be visible, extra-intestinal manifestations of Crohn’s, they aren’t as common as having unrelenting abdominal pain and diarrhea. Little do people know that the disease is wreaking havoc on the inside both physically and emotionally. Over recent years, the social media hashtag #IBDvisible has become a popular way to advocate for patients with IBD and raise awareness in our communities about how IBD impacts patients’ lives.

Thanks to the efforts of the Crohn’s and Colitis Foundation of America (CCFA) and the physicians, caregivers, and patient advocates who are speaking up, IBD is becoming more and more visible. Lastly, Crohn’s disease is unpredictable. Whether it’s during finals week in college or while you’re in a foreign country for a medical mission, we have no control on when our illness will strike. This adds to the emotional toll of the disease and limitations in life choices dictated by disease symptoms.

My experience

I was diagnosed with Crohn’s disease when I was 10 years old. This was very hard for me to accept until I transitioned care to an amazing pediatric gastroenterologist. This physician became my mentor, and I eventually embraced my diagnosis. I started talking to other pediatric patients who were newly diagnosed, helping them process and navigate their illness. I also got involved with the CCFA and became an advocate for IBD awareness.

Throughout my years of treatment for Crohn’s, I have received care from my pediatrician, gastroenterologist, endocrinologist, infectious disease specialist, surgeon, interventional radiologist, psychologist, and nutritionist. This means I have a good foundation to work from to identify a healthy physician-patient relationship and know what kind of physician I want to be for my patients.

How to deliver great care to pediatric IBD patients

The following are the attributes I gleaned from my health care professionals that I wish to emulate in my practice as an osteopathic physician. If you are a physician who cares for pediatric IBD patients, you may find them to be useful reminders.

Speak directly and candidly to pediatric patients.

It made a huge difference as a child to directly be addressed by my physician. It’s easy to forget about the pediatric patient in the exam room and talk directly to parents. This makes sense when the patient is a newborn who can’t engage at all, but not so much with an older child. Engaging and connecting with the pediatric patient helps with establishing a strong physician-patient relationship as our patients grow and mature.

Have empathy.

My GI physician had incredible empathy. He desired to know exactly what his patients were experiencing and took every opportunity to put himself in the shoes (however small) of his patients. Enteral nutrition is one of the therapies pediatric gastroenterologists use to treat patients. This involves obtaining almost 100% of your calories from enteral formula. Usually, patients pass a nasogastric tube and “feed” overnight, then drink a small amount when they are hungry during the day. This is where I really struggled—NG tubes are uncomfortable to pass. My doctor knew this and sat alongside me as he passed the NG tube on himself before helping me pass the tube on myself. He did this with each of his patients who needed to receive their nutrition via this route.

Connect with patients about things other than their illness.

As a medical student on rotations, I often have to remind myself to slow down and actually talk to patients. It’s important to take the time to find out what hobbies and activities our patients are involved in. We should treat each patient as a person, integrating body, mind and spirit; we are taught this in our osteopathic practice. My physician knew that I spent my free time backpacking and playing tennis, as well as how involved I was with my church. We discovered that we shared the same faith, and towards the end of our appointments, he would share a Bible passage with me and connect the message with a trial or success I was facing. This small act greatly strengthened our physician-patient relationship.

Silver lining

Although Crohn’s is a terrible disease, my experience helped me discover the qualities I wish to emulate as a future provider.