from the frontlines a pediatric gastroenterologists perspective on ibd

Have you ever wished you could talk candidly with a pediatric gastroenterologist about their unique perspective on childhood IBD? Are you curious about the latest developments in pediatric IBD research or what the future may hold for IBD treatment? From a doctor's perspective, what are some of the biggest challenges currently facing pediatric IBD patients and their families? In this blog post, Dr. Jay Fong, a board-certified pediatric gastroenterologist, is interviewed and asked these very questions. Dr. Fong has over fifteen years of experience in pediatric gastroenterology and currently practices at UMass Memorial Medical Center in Worcester, Massachusetts. Dr. Fong is also a member of IBD Connect's Board of Directors and has been serving us in this capacity since the nonprofit's formation in 2019. It was a privilege to be able to explore and discuss the evolving nature of pediatric IBD with Dr. Fong, and it is my hope that the insights and information discussed in this interview will be beneficial to you and your IBD Warrior!

Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child's individual treatment plan, please seek out the professional medical advice of your child's doctor or healthcare provider. The information provided in this post should not be used to diagnose and/or treat you, your child, or a loved one with IBD. If you have general questions, would like more information on this topic, or would like to connect with an IBD support group, please feel free to reach out to a member of the IBD Connect team, myself included, via the links at the bottom of this post. Now, let's dive into the interview with Dr. Fong!

Can you please introduce yourself? Tell us a little bit about yourself, your family, and your connection to IBD Connect!

My name is Jay Fong, and I am a pediatric gastroenterologist at UMass Memorial Medical Center in Worcester, MA. I am a husband and father of two boys who have lived in Massachusetts for at least 15 years now. My connection to IBD Connect was through my prior participation in the IBD Support group that started locally and preceded the current nonprofit we know and love, IBD Connect (but still continues to this day, thankfully!).

What was the driving force that motivated you to become a medical doctor? Why did you choose to specialize in pediatric gastroenterology?

The practice of medicine afforded me a way to apply my interest in human physiology and leverage that knowledge in a way to help families get to a better state of health, and pediatric GI was a vehicle in which to decipher so many different presentations of problems. It's a problem-solving activity that constantly challenges our notions of wellness and access to health care systems.

Could you explain in layman's terms what inflammatory bowel disease (IBD) is? How common is IBD among children? Is the incidence of pediatric IBD rising?

IBD is a condition that is characterized by chronic inflammation of the gastrointestinal (GI) tract. In an individual diagnosed with IBD, the immune system triggers a process of ongoing and continuous inflammation, and this inflammation ultimately results in targeted damage to the GI tract. The prevalence of pediatric IBD in the United States is about 100-200 for every 100,000 children, and the incidence (unfortunately) appears to be rising.

Can you discuss the potential long-term implications of IBD on a child's growth, development, and overall quality of life? How do you address these concerns in your treatment approach?

IBD has the unfortunate outcome of severely impacting a child's potential for growth and development, in the form of limiting what would have been a ‘normal' adult height. IBD can lead to missed school days for doctor visits, treatments, and/or potential hospitalizations. From a quality of life standpoint, a child's ability to leave the home for socialization with friends and travel with families can be limited to the constant need for restroom access, which can also affect schooling as well.

From your viewpoint as a pediatric gastroenterologist, what are some of the biggest challenges currently faced by pediatric IBD patients and their families?

Currently, access to the most effective medications with minimal delays is one large hurdle, given that health insurances usually impose restrictions on requiring other medications be trialed first (“the fail-first approach”). This can lead to further worsening of symptoms and a delay in improving quality of life metrics.

How important is patient education and family involvement in managing and treating IBD, and what role can nonprofit organizations like IBD Connect play in this process?

Our profession sees a very powerful benefit to patients and families being educated in the journey of the chronic disease that is ‘IBD.' Education can lead to personal empowerment and advocacy. Non-profit organizations like IBD Connect can certainly start to break down any stigmas that exist in the discussion of a GI-centric chronic illness like IBD, as well as direct families to resources that may not know they need. For the most part, families are appreciative of knowing that they are a part of a larger community.

What recent developments in the field of IBD research or treatment have caught your attention, and how do you foresee them impacting patient care?

IBD research appears to be headed towards an outcome of targeted precision medicine to better suit each patient and enable treatment teams to have a more effective way to keep symptoms in remission. Eventually, medical therapies will take each patient through a tailor-made medical regimen to treat their IBD instead of relying on a ‘one-size-fits-all' approach.

In your perspective, what are some of the pressing, unanswered questions in IBD research that necessitate further investigation, and how might addressing these gaps open up new avenues for advancements in patient care?

We still need to investigate further how our personal genetics interact with the micro-organisms that exist in our own digestive tracts along with our environment and advance our understanding of how that might influence a person's development of IBD (or not).

How do you see the future of IBD treatment evolving?

I see and hope for IBD treatment to be more ‘portable', and less uncomfortable, with more emphasis on oral therapies and potentially relying less on infusions or injections.

Finally, do you have any words of advice or hope for a parent of a child with IBD? What encouraging message could you share?

First of all, I would emphasize that every 10 years, there is appears to be many more therapeutic options to use than the ‘stone age' when there was only a few basic medications and surgery. The hope for a cure is never without merit, given the incredible amount of knowledge unlocked by ongoing research. I would say that having children be involved in a support group absolutely helps them come to terms with IBD and start flourishing personally, and even professionally. Children thrive with the right support. When a child's family actively helps their child navigate this journey, that child can develop courage in helping other children with a new diagnosis of IBD.

This concludes our interview with Dr. Jay Fong, a pediatric gastroenterologist and valued member of IBD Connect's Board of Directors. Clearly, Dr. Fong's extensive experience offers valuable insights into the challenges and prospects within the realm of pediatric IBD. The message of hope that Dr. Fong leaves us is palpable. Looking ahead, he envisions a future of precision medicine, providing personalized approaches to keep symptoms in remission. He also anticipates a shift towards more convenient and comfortable IBD treatments. It is my hope that Dr. Fong's answers to the questions in this interview provide some comfort and hope as you navigate your own family's unique IBD journey. If you are looking for more information or would like to receive support, please feel free to contact me or another member of the IBD Connect team. My email is linked at the bottom of this page. Before we conclude, I want to extend IBD Connect's deepest gratitude to Dr. Fong. His eagerness to participate in this interview speaks volumes about the heart he has for supporting our pediatric IBD patients and their loved ones. Thank you, Dr. Fong! And as always, stay strong IBD Warrior families!