We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from patient advocate Andy Jablonski.
I am 26 years old and have lived with short bowel syndrome, a rare intestinal disorder, my entire life. When it comes to this disease, I’m an expert by experience.
Short bowel syndrome (SBS), which affects about 15,000-30,000 people in the United States, is the result of a congenital defect (NEC, gastroschisis, and volvulus, to name a few) or trauma. Crohn’s disease is also a leading cause of SBS.
SBS is a condition that reshapes the way you live. There are multiple things a patient has to become accountable for, including self-managing the condition, keeping on top of medications, and making frequent visits to the doctor. In many cases, SBS patients face frequent diagnostic procedures or surgeries, or both. To manage the disorder, SBS patients have to make major changes to their dietary needs to help supplement what they do not get through oral feedings, often through TPN and enteral feedings. Dietary management is one of the biggest challenges of the disease.
Many things in your life change when you have a chronic condition like SBS – some good, some bad. One downside is that there’s always some sort of “fear factor” involved, with the patient wondering what could happen after one infection too many, and worrying about the multiple things that could go wrong from undergoing surgeries and procedures. On the plus side, living with a chronic condition prompts patients to learn techniques that allow them to live a productive life and to learn how to effectively communicate with their healthcare provider.
Many SBS patients want to study the condition and understand it better, so they can be more efficient with their lives and time. I am one of those people, and being around medicine my entire life was a driving factor to becoming a full-time patient advocate and support resource for other patients like myself. For the past two years, I’ve attended Digestive Disease Week, a major conference held each May that brings together more than 15,000 gastroenterologists, industry professionals, medical students, and vendors from all over the globe. Also at the conference are some people like myself, who live and breathe SBS every day.
I had many opportunities to talk with physicians at the recent conference, and our conversations usually started with them asking, “Why are you here?” When I explained that I’m an advocate for SBS research and awareness, as well as an SBS patient, their attitudes changed, and they became receptive to me and my mission at the conference. Many agreed that there’s a need for SBS to become better known in the GI community and that there’s no real support for patients and caregivers. Hearing those sentiments confirmed that I’m on the right path with the foundation I started two years ago.
Not all physicians I’ve met at conferences have been welcoming, but many have been. And some have gone as far as to tell me that I’ve taught them more about my disease then they ever knew. Most physicians study a disease process a few times in medical school and then will only see a case or two in their careers, one GI told me, unless they really specialize in a particular condition. Hearing that I provided these doctors with new insights about this rare disease was empowering to me.
As a patient advocate, I know that it’s because of healthcare providers that patients like me continue to thrive. But more medical professionals can benefit from listening more to their patients, and doctors can learn from the experts who come into their offices and hospitals every day.
Andrew “Andy” Jablonski, of Lincoln, Neb., founded the Short Bowel Syndrome Foundation in December 2010 as a resource for SBS patients and their families.