Coping | Daily Life
Happy 2024! A new year brings with it lots of celebrations, including birthdays. For some of you out there, this year’s birthday might be more nerve-wracking than previous ones as you get closer to the time when you or your child need to switch from your pediatric gastroenterologist to an adult provider.
If you’re worried about the transition or have started looking into doctors and aren’t sure where to go from here, here is some information from someone whose been through it.
The specific time to switch from a pediatric provider to an adult provider varies based on your hospital and specific provider. Unfortunately, most pediatric doctors will require you to switch to an adult provider eventually. The one caveat to this is if you’re lucky enough to have a provider who treats both, but they’re not as common as we might hope.
Switching from pediatrics to adult care doesn’t end with the doctor. It typically requires a switch to a new hospital or at least a new area of it. That can be a culture shock by itself.
Pediatric hospitals are bright and colorful. They have wonderful murals, fish tanks, games, and music. Adult hospitals all seem to have one of three main color schemes: beige, that brown/beige color that looks like poop; anxiety blue; or vomit yellow. They have no music, no fun, and nothing calming like pediatric hospitals.
Another big difference in my experience is the way patients are treated in pediatric hospitals or centers versus adult-focused centers. In pediatrics, needle gauges are smaller, pain management is considered carefully, and a chair for a parent or accompanying adult is always available. Adult hospitals expect you as the patient to stand by yourself more.
One of the big differences I noticed in my transition from pediatric to adult care was how my doctors managed my care. My pediatric gastroenterologist coordinated my care and saw me as an entire person, not only my intestines. In adult care, I’ve found a lot more segmentation of myself into the specific body part in which the doctor specializes. It left me in a really weird place where I had so many people telling me what to do for so many different body parts, but no one who sat down with me and helped me understand what I needed for myself as a person.
Considering these differences is important when deciding when to switch and where. Ultimately, my pediatric gastroenterologist never pressured me into the transition. I knew the right time to switch to adult care came when I started getting sad seeing little kids treated for their illnesses at the same place where I was treated. I had already transitioned most of my other specialists to adults, which only left my gastroenterologist. Still, it was incredibly difficult and to this day, I emphasize that I never left my pediatric gastroenterologist, I merely left my pediatric hospital.
To make the transition easier, I started meeting adult doctors while I was still being treated by my pediatric doctor so that I didn’t have to adjust to it right away. I also made a list of what was important to me in a new doctor and hospital, such as coordination of care. Even given all that, it took a lot of trial and error.
Here are some tips based on my experience that may help you with your transition from pediatrics to adult care.
1. Consider location carefully. The transition to an adult care team often coincides with big life changes, such as finishing high school, starting college, or starting a career. If you plan to live away from where your current doctor is, it might be a good idea to consider looking for a new doctor in your area.
2. What does the hospital offer? Hospitals come in many different sizes. If you’re like me and have multiple other issues alongside your Crohn’s, you might want to find a hospital that offers multiple departments with different specialists. Consider also the process of getting to the hospital. Free parking is nice if you can get it.
3. How are visitors treated? In Pediatrics, most patients are used to having a parent, guardian, or support person with them at their appointments. While this is technically also the policy at most adult hospitals I’ve seen, the reality may be different. The visitor policy for hospitalizations may also make it more difficult. If this is important to you, see what is available.
4. What support systems exist? Patient support systems are a must, from mental health providers to patient advocates. I knew that one hospital was not the right fit for me when I had trouble getting hold of a patient advocate. On the other hand, my current hospital has a great patient advocacy department where I can always get hold of someone. My doctor’s office also has additional resources, including a mental health professional and a dietician that I can work with. I found that I missed having a full clinic when I was at a smaller hospital. Support systems also include the chaplain’s office, so if having spiritual guidance is a must, make sure to check out the options.
5. How is the doctor? More than anything else, you must feel that you can form a good relationship with the doctor. I have found that I will never have the same relationship with my doctors as an adult that I did when I was in pediatrics, and that’s okay. What is important is feeling that you have a doctor who will listen to you, work with you, and be there for you when you need them.
I don’t want to downplay how difficult the transition can be from pediatrics to adults. I think patients and families are generally not well-prepared by their care teams to understand the differences in the ways patients are treated, decisions are handled, and resources are accessed. I hope this blog helps to make you feel a bit more prepared to tackle this milestone.
Note from the Editors:
We recognize how challenging finding a provider can be. For more help with finding adult GI care you can:
Karen Shalev is an educator, creator, and dreamer. A lifelong “professional patient,” Karen understands firsthand the demands those living with IBD struggle with and dedicates herself to disability advocacy. During her undergraduate career, Karen earned recognition for her work through the Abbvie Immunology Scholarship and the Delta Alpha Pi Scholarship. Karen recently earned her Master of Science in Communication.