When dealing with the effects of Crohn’s disease, your health depends upon the expertise of numerous professionals. You’ve likely consulted with a primary care physician (PCP) or family physician, a gastroenterologist (GI), and perhaps a colorectal surgeon if you’ve considered a surgical procedure. Likewise, you may be occasionally seeing a nutritionist who specializes in Inflammatory Bowel Disease (IBD) diets, and you’ve definitely spent one-on-one time with the clinic support staff like nurses and lab technicians.
These healthcare providers are all here to help you, but to ensure that you’re getting the best treatment for Crohn’s that you can get, you’ll need to stay involved in your care.
If you’re feeling iffy about your current Crohn’s treatment provider, it’s time for you to check in with yourself. How do you know when to switch doctors? Ask yourself these questions about your healthcare—know that you’ve got options. Advocate for yourself, and don’t lose hope! Keep searching until you find the right Crohn’s disease doctor for you.
Am I being seen by the same staff each time?
With a complex condition like Crohn’s, you benefit from continuity in your care. If you’re seeing new faces each time you go to the clinic, it’s going to be difficult for these providers to fully understand your specific case and how it is progressing over time. Each gastroenterology center is different; keep looking for one in which you feel comfortable—and personally recognized—when you walk in the door.
Is my GI answering all of my questions completely?
Even the best Crohn’s doctor in the world won’t have all the answers, but the top Crohn’s doctors should not only be up-to-date with the latest Crohn’s treatments but also communicative with their knowledge. It should be clear that your GI has time to give complete answers to questions ranging from general inquiries like, “How do doctors diagnose Crohn’s disease?” to more specific questions like “What does the latest Crohn’s research say about the long-term side effects of Remicade?”
It’s all too common for patients to feel overlooked and disregarded amidst the shuffle of the modern healthcare system. If the staff at your gastroenterology clinic seem too busy to answer your questions, or if your GI doctor leaves the room before opening the floor for questions, consider looking for another Crohn’s disease specialist. You need someone who has the time to keep you informed about your condition, your options, and your test results.
How long does it take to schedule an appointment or receive treatment?
Even getting in with the top Crohn’s doctors in the U.S. doesn’t help you much if it takes months of waiting (and suffering!) before you’re seen. Flare-ups can occur unexpectedly and the symptoms of Crohn’s can be wildly unpredictable. A good Crohn’s specialist will understand the erratic nature of the disease and will be available to you when you need it.
Ask yourself, “How long does it take for the GI clinic to return calls?” and “How far ahead do I have to schedule a GI visit?” If the answer makes you feel hopeless, start researching a new doctor (tips for finding a doctor below).
Am I being given all the options?
IBD research is still an evolving field and important new discoveries are made every year in the latest Crohn’s research. There is no reason why you should feel confined to one course of treatment when there are dozens of available Crohn’s treatment options.
Listen to your intuition. If you’ve heard success stories from peers about a new Crohn’s treatment, you should be able to comfortably bring this up with your doctor to get their expert insight. If doing so makes you feel uncomfortable, or if they brush aside the question by mentioning that they don’t specialize in those types of Crohn’s treatments, these are red flags. It’s time to switch healthcare providers.
Is my doctor staying relevant in the field?
Many people with IBD probably ask themselves, “How do I know if my GI is staying relevant in their field?”
There are ways to check. First, visit pubmed.com, where you can see if your GI has published or contributed to new Crohn’s research or the evaluation of new Crohn’s treatments. Likewise, GIs who are actively leading or contributing to clinical trials for new Crohn’s medications will be experts on the latest findings in these treatments and their alternatives. You can search the database of doctors leading IBD clinical trials on the Discover Therapies homepage.
Second, read as much about your gastroenterologist as you can. Doctors specializing in Crohn’s disease who are up-to-date in their field will likely mention any number of these words in their bio, with reference to their speciality or ongoing research: “precision medicine”, “clinical research”, “preclinical human IBD mechanisms”, and “IBD novel technologies” and “IBD environmental triggers”. These are 5 areas of focus that have been deemed high in priority by the National Scientific Advisory Committee of the Crohn’s and Colitis Foundation. If your doctor is publishing work on these topics or serving on an advisory board that addresses these areas of research, they are likely staying involved with the latest developments in Crohn’s disease.
(2018) Challenges in IBD Research. Crohn’s and Colitis Foundation. Retrieved from http://www.crohnscolitisfoundation.org/science-and-professionals/research/challenges-in-ibd-research/