Tips for Newly Diagnosed IBD Patients
First off welcome to the shittiest club with the strongest people. Our digestive systems don’t always work but we are still able live happy and healthy lives despite inflammatory bowel disease (IBD).
Here are a few tips for newly diagnosed IBD patients I learned from my own experience as a patient, patient advocate, and community leader to help you on your journey!
ADVOCATE FOR YOUR HEALTH. Speak up for what you need and advocate until you get it. Remember, nobody knows your body like you do. This will come in time as you learn more about your condition and your body.
LEARN ABOUT YOUR CONDITION. The more you know about your condition the better you can take care of yourself and advocate for what you need. When you are ready consider learning as much as you can about:
o Your disease (Crohn’s | ulcerative colitis)
o Treatment options (medications, surgeries, lifestyle changes, and mental health support…)
o Supporting therapies (chiropractic, massage, integrative/alternative/holistic therapies, physical therapy, counseling…)
o Important tests to monitor your disease (ex: colonoscopy, fecal calprotectin, endoscopy, CT scans, pill cam…)
o Screening and other preventative care (ex: bone density scans, colon cancer screening, vaccinations…)
LEARN THE HEALTHCARE SYSTEM. Learn how the healthcare system works and the language used to be the best manager of your care. A great place to start is by learning about your insurance plan and prescription drug coverage.
CONNECT WITH OTHER PATIENTS. Finding support through community is powerful. Nobody will understand what you are going through like fellow patients. Whether you join online support groups, attend in-person, or connect on social media, it is wildly beneficial to connect with others who simply, understand. If you need help connecting, follow me on Instagram @betterbelliesbymolly.
BUILD A TRUSTING RELATIONSHIP WITH YOUR HEALTHCARE PROVIDER(S). Finding a provider that is skilled in treating your condition, listens to you, and supports your journey is hard to come by, but they do exist. Finding that provider can and will likely make a significant difference in your journey. If you are not satisfied with your healthcare provider know you can see others until you find, “the one!”
PREPARE QUESTIONS FOR YOUR MEDICAL APPOINTMENTS. If you are new to the healthcare system, you might not know that your time with your provider typically is limited. Sometimes 10-15 minutes is all you get so preparing your questions ahead of time and writing down your symptoms, mapping out what you have/haven’t tried, keeping test results organized and available when going to new providers can really help you get your needs met. This helps you remember your questions while in the moment and ideally you will leave with answers to those questions. This also helps providers especially new providers you are seeing for the first time. The more information you can give them the better they can treat you! Feel free to make lists and bring them with you/email them so that your provider can add this information into your chart and review beforehand if they have time.
DON’T GIVE UP! It is normal to have a lot of feelings when being diagnosed with IBD. Know that whatever you are feeling is OK, let yourself feel. FIND A WAY TO REMAIN HOPEFUL. Even if you can’t see the light at the end of the tunnel try to believe it is there, somewhere. Hope and persistence go a long way with IBD and you are stronger than you realize. YOU ARE NOT ALONE…and remember…YOU GOT THIS!!
