Experts by Experience

By Andrew “Andy” Jablonski Founder of the Short Bowel Syndrome Foundation

I am 26 years old and have lived with short bowel syndrome (SBS), a rare intestinal disorder, my entire life. When it comes to this disease, I am an expert by experience.

SBS is a rare disorder that affects about 15,000 to 30,000 people in the U.S. It is the result of a congenital defect (such as NEC, gastroschisis, and volvulus) or trauma. Crohn’s disease is also a leading cause.

SBS is a condition that reshapes the way you live. There are multiple things you become accountable for, including:

  • Self-managing your condition

  • Keeping on top of medications

  • Frequent visits to the doctor

  • Facing frequent diagnostic procedures and/or surgeries

To manage the disorder, SBS patients must make major changes to their dietary needs to supplement what they do not get through oral feedings—often through Total Parenteral Nutrition (TPN) and enteral feedings. Dietary management is one of the biggest challenges of SBS. Being around medicine my whole life was the driving factor for me to become a full-time patient advocate and support resource for other patients like myself.

Bridging the Gap at Digestive Disease Week

For the past two years, I have attended Digestive Disease Week, a major conference held each May that brings together over 15,000 gastroenterologists, industry professionals, medical students, and vendors from all over the globe. Many of the physicians I met this year were practicing overseas. Because SBS is so rare, there are not many experts on the condition. Most clinical experts are seasoned physicians and surgeons, but not all. Also at the conference are patients like myself, who live and breathe SBS every day.

I had many opportunities to talk with physicians at the recent conference. Our conversations usually started with them asking, “Why are you here?”

When I explain that I am an SBS patient and an advocate for research and awareness, their attitudes change. They become receptive to me and my mission. They also express that SBS needs to become more known in the GI community, noting the current lack of real support for these patients and caregivers. Hearing those sentiments encourages me that I am on the right path with the foundation I started.

Some physicians I have come to know went so far as to tell me that I have taught them more about my own disease than what they originally knew. Knowing that they learned new insights was empowering. As one GI specialist told me, most physicians study a disease process a few times in medical school and will only see a case or two in their entire careers, unless they truly specialize in that particular condition.

Overcoming Skepticism

Not all physicians I have met at medical conferences have been welcoming. At a prior conference, I was talking with a physician about the foundation, and this doctor dismissed the impact we were making. Helping those with SBS, the doctor told me, should be left to trained medical professionals.

My response was, “Even though I don’t have a medical degree, it doesn’t mean I can’t learn from my own experience and apply it to real-life situations.”

Patients and caregivers are just as knowledgeable about themselves and their conditions as their treating physicians. It just is not frequently viewed that way. Until you have actually lived with a condition like SBS, you have no idea what you are dealing with, medical degree or not.

The Reality of Chronic Illness

It is a completely different ballgame when you live with a chronic medical condition. Many things in your life change—some good, some bad.

  • The Downside: There is always some sort of “fear factor” involved. You constantly wonder what could happen after one infection too many, and worry about the multiple things that can go wrong when undergoing surgeries and procedures.

  • The Plus Side: Living with a chronic condition allows patients to understand themselves better than they might think. They learn techniques that allow them to live a productive life and how to effectively communicate with their healthcare providers.

There will always be stress and worry, but you can limit the effect it has on you. I have met a lot of SBS patients like me who want to study the condition and understand it better so they can be more efficient with their lives and time.

As a patient advocate, I know that it is because of healthcare providers that patients like me continue to thrive. But more healthcare providers can benefit from listening to their patients. Doctors can learn from the experts who come into their offices and hospitals every day. Doing so would give them a better understanding and a full picture of the daily patient experience.

About the Author Andrew “Andy” Jablonski, of Lincoln, NE, founded the Short Bowel Syndrome Foundation in December 2010 as a resource for SBS patients and their families. www.shortbowelfoundation.org