from patient to doctor embracing ibd and inspiring resilience

This month, we're thrilled to spotlight the incredible journey of Adam Finkelstein, an inspiring IBD patient who has faced his diagnosis with remarkable positivity and resilience. In this post, Adam takes us through his extraordinary path from being diagnosed with ulcerative colitis in early childhood to recently graduating from medical school. Beyond his medical achievements, Adam is a passionate advocate for addressing gaps and overcoming challenges within the IBD community. As the author and illustrator of Up and Adam: A Patient's Experience on Winning with IBD, he offers young patients a relatable role model, demonstrating that they are never alone in their journey. At IBD Connect, we are deeply inspired by Adam's unwavering spirit and dedication. We hope you find his story as uplifting as we do!

My name is Adam Finkelstein, and I am a longtime IBD patient, being diagnosed with ulcerative colitis at age two and having my colon removed at age 12. Presently, I am 26 years old and am starting general surgery residency as a new doctor. At the beginning of medical school, I published a children's picture book, Up and Adam: A Patient's Experience on Winning with IBD (available on the Barnes and Noble Website), about my childhood experiences facing IBD with a positive attitude. The goal of the book is to provide young patients with a relatable role model and to show them they are not alone. IBD Connect provided an excellent opportunity to share my experiences:

How Did I Face IBD with Resiliency as a Child?

IBD provides me with a strong sense of pride. My thoughts about IBD jump straight to times of overcoming challenges associated with disease. These positive thoughts overpower the difficulties themselves of stomach pain, trips to the bathroom, surgeries and other related obstacles.

Being diagnosed so young, I failed to realize that other kids lacked these health challenges, to the extent that I even asked a friend in elementary school why he didn't go to the nurse's office at lunchtime for medication. Turns out he didn't need daily medication since he didn't have a chronic health challenge. Over time, I started understanding that facing these health challenges at such a young age was unique, and the uniqueness did not lead to feeling alone. Instead, I related the feeling of uniqueness to bravery. I felt courageous. I could handle situations that many would find difficult. A track record developed. If I could handle those difficult things in the past, why can't I overcome the next one? These feelings were prominent for every subsequent doctor's appointment and health challenge.

How Did I Form Positive Associations with IBD-Related Challenges?

A strong support system and forming positive associations with aspects of IBD were drivers of my upbeat outlook. My mom turned doctor's visits into a welcoming event. We listened to my favorite radio station on the way to the appointment and there was a chocolate chip cookie and lemonade to look forward to afterward. Even today I half-jokingly/half-seriously say that the trips to the bakery strongly contributed to my interest in becoming a doctor, since it helped set the foundation for positive associations with hospitals. Also at appointments, my doctor took the time to listen and talk in a way that I could understand. The small toy his office gave at the end of appointments helped too.

As with most of us with IBD, I experienced flare-ups. The stomach pain, the frequent bathroom trips, and the school absences were exceedingly tough to face. The only thing more difficult than being stuck on the toilet was racing back to the toilet after finally getting off. However, because of my dad, these challenges are secondary in my mind when I think about childhood IBD flares. My dad and I told stories when I was on the toilet. Superhero adventures. Each building off the previous one. I became Adam Ant and over time we developed a whole cast of characters. For one flare up in fifth grade, we switched gears a bit. We made the toilet time more academic. My dad noted how my classmates at school were learning how to multiply two-digit numbers, and therefore toilet time transformed to math lessons. And by the time I got back to school, I was more comfortable with multiplication than most of my classmates.

What is the Goal of Up and Adam: A Patient's Experience on Winning with IBD?

The book that I authored and illustrated, Up and Adam: A Patient's Experience on Winning with IBD, is about my childhood experiences facing IBD with a positive attitude. The goal of the book is to provide a relatable role model for young patients and to show them they are not alone. Although everyone has a unique experience with their disease, the book demonstrates how I overcame common challenges such as taking medication, missing school, getting blood draws, going for doctor's appointments, and frequently making trips to the bathroom. At the end of the book is a series of discussion questions, including “what can you do to pass the time while stuck on the toilet (other than use your phone)” to prompt patients to think of ways they can tackle their challenges. All profits from the book are donated to IBD related non-profits.

Why Did I Need to Write Up and Adam?

When I was in college, prior to the creation of Up and Adam, I knew that I wanted to create a unique resource to help other IBD patients. It had to be about personal experiences while also being relatable to others. It needed to fill a gap in available resources and be something people could physically hold in their hand. Pediatric IBD, especially Very Early Onset IBD (VEO-IBD) was my “niche” given personal experiences. The children's book seemed like the perfect combination of these goals given that there were no IBD children's books written by young IBD patients.

How Can You Help Solve a Challenge or Fill a Gap in the IBD Community?

To help solve a challenge or fill a gap in the IBD community, think about…

What makes you unique?

What has helped you?

What do you enjoy?

What need is there to fill?

What is something simple that you can do?

Interest-Based Ideas:

Are you a runner or athlete? Could you create a sports tournament or a walk/run for IBD? Or attend an IBD walk through an already established organization or hospital? What about sponsoring someone who is participating in a fundraiser?

Do you enjoy art? Can you make art or jewelry and send it to young patients in the hospital? Or could you sell it and donate profits?

Do you like to write? Could you write a book for people to purchase or letters/cards to send to IBD patients?

Do you like to cook? Could you create a cookbook or cook IBD-friendly meals for a community event for IBD patients?

Experience-Based Ideas:

Do you find it helpful to talk to others? Could you reach out to your local hospital and learn about available support groups (or start one, like IBD Connect did?)? If you don't want to join a group, you could also reach out to a local hospital's IBD center and tell them that you would be happy to talk with IBD patients who need social support. For example, often hospitals will connect patients who are about to undergo a procedure to another patient who already had that procedure.

Have you been in the hospital? Could you create a guide of tips and tricks that helped you or a list of questions to ask?

Have you had blood draws, procedures, or other challenges? Could you create a tips and tricks guide for these, and then send them to your doctor's office for other patients to use?

How Did I Handle Surgery With a Positive Attitude?

As with some of us with IBD, I experienced multiple major surgeries. At the end of sixth grade, a trip to the doctor with the potential of staying one night turned into a 32-day hospital stay and having my colon removed. By this point, I had been an IBD patient for ten years. My confidence came from knowing my ability to handle challenges rather than an ability to predict an outcome of treatment. I had tackled flares, medications, blood draws, and more. Why not surgery too? The surgeon told me that walking after surgery would help me recover and return to baseball faster. Walking was an action that I could handle, and I wanted to get back to the baseball field. The outcome of surgery would be what it would be and was not entirely in my control, but I could help myself and my doctors by walking.

The first little league game back was incredible. I had center field locked down. Although I had an ileostomy and knew I couldn't dive on my stomach, it didn't affect how I played. If anything, I thought “I'm getting as many hits as everyone else, and I have a stoma!”. Six months later, the ostomy was reversed, and now my intestines are all connected on the inside.

What was My Journey to Medical School Like?

My surgeon quickly became a strong role model for me given his understanding of bedside manner and the comfort I felt in his care. Although by college time I was no longer his patient, we kept in touch, and he connected me to one of his colleagues for a research position. There, I gained my initial exposure to the medical field and surgery from the physician's perspective. This internship confirmed my interest in a career as a physician.

In medical school, I spent a couple of months on colorectal surgery (surgery on the colon and rectum) and found it incredibly rewarding to connect with different patients. While not all patients were having surgery for IBD or stomas/ostomies, I still formed deep connections with many patients due to the relatable experience of having abdominal surgery. However, I only told patients about my history if I thought that they would benefit from it and that they would understand that every patient has a different experience and potentially different outcomes.

It was incredible to see how some patients responded to hearing that someone on their care team had a similar experience. I felt proud to answer questions that other members of the care team couldn't since I was speaking about experiences I had as a patient. Knowing someone else with IBD or who has had surgery doesn't minimize the difficulty, but it can help knowing that you aren't alone. I felt more part of a larger community as well in connecting with the patients.

As my career evolves, I am looking forward to forming more bonds with patients and seeing how I can combine my personal experiences and education to help patients with medical and non-medical challenges associated with IBD.

Adam Finkelstein's journey from an IBD patient to a doctor is a testament to the power of resilience, positivity, and the importance of a strong support system. His story highlights how personal challenges can be transformed into strengths, not only for oneself but also for the broader community. Through his book, Up and Adam: A Patient's Experience on Winning with IBD, and his work within the medical field, Adam continues to inspire and guide others who are navigating similar paths. His experiences remind us that while the journey with IBD can be difficult, it is also an opportunity for growth, connection, and making a lasting impact. We at IBD Connect are honored to share Adam's story and hope it encourages you to find strength in your own journey, knowing that you're not alone. If you would like to use your talents, knowledge, or ideas to fill a gap within the IBD community, as Adam did with his book, please click the link below to learn about IBD Connect's Empowered by IBD Program. This program encourages participants to develop solutions to the common challenges faced by pediatric IBD patients and their families. Thank you for reading, and we look forward to continuing this conversation as we all work together to support the IBD community. As always, stay strong IBD Warrior families!