Making the Transition from Pediatric to Adult GI Care
by Katie Lucksho
Transitioning from pediatric to adult GI care is not an easy task for a young patient living with Crohn's disease. I was scared and anxious about changing from a doctor and a program I had come to know, trust, rely on and confide in wholeheartedly. I was not sure what my future health care would be like, but I knew I did not want to be sick and if I happened to get sick again, I wanted the same care I had in pediatrics. To me, that was the best care in the world. Knowing the University of Maryland Medical Center would still be providing my care, I was certain everything would be okay but many tough changes were still ahead of me.
The most difficult change was discontinuing my treatment with the doctor who diagnosed me with Crohn's disease at age 15. At that time, I had been extremely sick for four months and unable to receive a correct diagnosis and treatment from doctors in my hometown, which is two hours away from the University of Maryland Medical Center. When I was 16, I first saw my pediatric GI doctor at UMMC who immediately diagnosed me with Crohn's disease. I was treated with multiple medications and finally on my way to feeling better. Although the first two years were difficult and included several hospital stays, I eventually achieved remission and remained in remission for the next five years, thanks to my doctor and parents' dedication and commitment to getting my Crohn's under control.
My relationship with my doctor was a partnership. I fully trusted his choices for my treatment and he fully trusted me to follow his dos and don'ts. Changing doctors after seven years was devastating. He was the only one who knew my medical history and had ever treated me. I was unsure how a new doctor could possibly understand my past journey with Crohn's without having been there every step of the way.
When I transitioned to Dr. Raymond Cross three and a half years ago, I was sick and needed my first surgery. The most important thing became trusting him as a doctor I did not know and getting better quickly. My past journey with Crohn's and the relationship with my pediatric GI doctor were no longer as important as my present journey and the relationship I needed to form with my new adult GI doctor. Not only was I transitioning to an adult GI doctor and program, but I was transitioning into an adult patient. I realized I needed to be more independent and in control of my health care. As a pediatric patient, I relied on my parents to ask questions, find out details, conduct research, tell me which medications to take and how often, fill my prescriptions, call my doctor, schedule appointments, be aware of side effects from medications and handle my health insurance and bills. Now, I needed to be the one who did all of those things for myself.
Dr. Cross and his team helped me gain total control of my health care by fully explaining options, providing information, encouraging me to make decisions and being there when I needed them. This was a huge adjustment, especially when I was used to my pediatric GI doctor telling me what to do and my parents taking care of everything. During those years, I was in high school and college and wanted to be a normal, healthy young adult, so I only needed to know what would make and keep me healthy. I had a lot to learn, and took it one step at a time with my parents by my side. I think the transition was harder for my parents to no longer be in control of my health care, than it was for me to take over that control. My parents will always be my main support group and aware of my current medical situation, but now I make the decisions and handle the details.
I believe the change was a good change, and I have a better understanding of my Crohn's and realize that managing this disease takes great responsibility on many levels. My surgery with Dr. Adrian Park was a success and three years later I am still in remission thanks to Dr. Cross and my dedication and commitment. Wherever my journey with Crohn's takes me, I know I will be in good hands at the University of Maryland Medical Center.