October 21, 2015 — Blog Post
What to Know About Transitioning from Pediatric to Adult IBD Care
At age 12, Gary Oster, was diagnosed with Crohn’s disease, a chronic digestive disorder. His growth rate slowed, his pain increased and eventually had multiple operations. That is the physical reality. But, as a growing teenager there were so many other aspects of the disease he needed to understand that were not part of his regular GI visits.
As part of Emmi’s Health Literacy Month series, Gary has broken down the three critical areas teenagers and parents need to discuss as they pass through puberty and onto college.
Randi: What was the most unexpected aspect of coping with Crohn’s?
Gary: My body was changing. As I started to get the disease in remission, the nutrients were staying in my system and I started to grow again. But, I think the years of slower growth propelled me faster into puberty and major acne. No one mentioned this to me. I had it so bad that people would stop me in the street and recommend ointments. I went to a dermatologist and he gave me the standard protocol of antibiotics. I told him I had an operation and was missing part of my intestine but he said the pills should work.
I should not have listened. I missed school for a week in pain with C Diff (a dangerous intestinal infection). The lesson learned is: ask your doctor about growing up with the disease and take the time to understand how it impacts all aspects of maturing. Sometimes they will just talk about the disease, but it would have helped if I understood more about the impacts on my physical and emotional development.
Randi: How did you prepare for living in college?
Gary: I went through Center for Student Disabilities and they were very accommodating. One thing is I had a single with my own bathroom, which sounds cool but it made me stand out and tell people faster than I was ready to about my disease.
But, even bigger than that was my lifestyle requires me to eat very healthy and get plenty of rest. This is not necessarily the college way. I think as I looked at schools, I really needed to understand more about the social life and drinking. Those are not typical questions you ask when visiting schools with your parents. After living on campus, I eventually realized I was more suited to going to a regional campus and living at home. Now, I still get to spend time with my friends, but I am not constantly surrounded in a dorm with the noise level and parties. I can go and leave as I choose.
Randi: As you turned 21 and are no longer a pediatric patient, how did you find a new doctor?
Gary: I asked my GI doctor but he told me that many will not know about the nutritional approach I use to treat my Crohn’s disease. I went to the doctor he recommended and told the new doctor how I don’t eat solid food for three weeks twice a year and use enteral therapy (getting liquid nutrition through a tube) as my treatment. The doctor stared at me. He said I looked great and didn’t need an upper and lower scope test and that he’d just take blood samples. Basically, he said if I was ever not feeling well to call him. My sense was he knows how to deal with the disease when it is active but really doesn’t help if I am feeling good. He never called with the blood test results. Which I assume is a good thing. For others, if your GI doesn’t call back with your blood work, call the office and find out what is going on.
About Gary Oster: When he’s not volunteering as an EMT or going to college, Gary competes in strongman competitions. He recently placed 2nd for his weight class in the Granite State Strongman Championship and qualified for Nationals. He hopes his strength, in spite of Crohn’s disease, inspires others to try to go for their goals. Find Gary on Instagram @garyoster.
About Randi Redmond Oster: Randi is Gary’s mom and the award-winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. She’s a Malcolm Baldrige Examiner, focusing on healthcare and a leading speaker on healthcare reform, shared decision making, and patient engagement. Find Randi on Twitter @helpme_health.