Education and Collaboration Leads to Patient Empowerment
This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
When I began my advocacy journey, I was hesitant. I knew how to speak my mind and how to fight for a cause, but the medical science intimidated me. And because I spent so many years living with ulcerative colitis (UC), a form of inflammatory bowel disease (IBD), in ignorance and darkness, I didn’t think that I had the proper resources. I thought it was arrogant to believe I had a voice in the fight for patient quality of life.
The turning point for me was when I dove deeper into social media, finding kindred spirits and doctors like David Rubin, MD, Chief of the Section of Gastroenterology, Hepatology, and Nutrition at University of Chicago Medicine. Dr. Rubin brought information to Twitter in a way that connected me to my disease and to an inner advocate that was screaming to get out. I was honored to sit down with Dr. Rubin at Digestive Disease Week last month to talk about being educated about IBD, ways to build a health care team, and what patients should expect from that health care team.
You can get more information about IBD and resources for helping plan appointments and conversations with your health care team at CrohnsandColitis.com.
Dr. Rubin described IBD as “when the immune system of our intestines, which is there to protect us, has become activated but doesn’t turn itself off.” This is a clear and concise description that’s easy to share with anyone at any age.
But there are a few other things that are important to remember while living with IBD. The exact cause of UC is unknown, though as Dr. Rubin said, it is believed to be caused by an overreaction of the immune system. As a result, damaging, chronic inflammation can occur in the large intestines and lead to symptoms.
We as patients may blame ourselves or allow others to blame us for flares and symptoms, but, as far as we know, UC is not caused by something a person may have done or eaten, nor is it contagious. Additionally, UC can be unpredictable and progressive in nature. So over time, symptoms might worsen or change altogether. Remembering that this is a chronic autoimmune condition can help alleviate anxiety and self-condemnation.
Create A Team
Working with your doctors is one of the most important aspects of treating your UC. It begins with building a bridge of communication between you and your gastroenterologist. It’s important to be open about all your symptoms and meet routinely with your doctor to ensure active monitoring of your disease, regardless of symptom severity. Your gastroenterologist needs as much information as possible to create a proactive treatment plan and set goals that are right for you.
Dr. Rubin also suggested having a “quarterback” and making sure they go beyond sharing digital files to communicate with the rest of your care team. Your quarterback should be calling the right plays to ensure your treatment plan is a single plan that all your care team members agree on.
Does your team need to be doctors all working out of the same hospital? No. But they should all be communicating.
What You Should Plan For
Dr. Rubin stated very simply that even when you are living with a chronic condition like UC, you should plan to be well. What he meant by that is that with proper care and treatment, remission is possible. It may take time, trial, and error, but a patient shouldn’t feel like they must plan to live symptomatic and in pain for the rest of their lives. So stay open to the possibilities and the changes—and make sure your health care team does too.
I also believe that you should expect passion from your gastroenterologist. Working in this specialty takes a lot of heart, time, and patience. They should be passionate about getting their patients to remission. You need energy, a progressive attitude, and teamwork to make this work!
I’ve come a long way from my days of hiding from my gastroenterologist. It was quite a journey to get here, but I opened myself up to education and the overall experience of living with and managing UC. Now, I’m able to better advocate for others living with IBD — and I stay open to the possibility of remission for myself.
You can prepare for your next trip to the doctor by visiting CrohnsandColitis.com for tips on managing your appointments and working closely with your gastroenterologist. If you are looking for ways to start a more productive conversation with your gastroenterologist, visit the Doctor Discussion Guide for more information.
Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.