How Sharing Your Narrative as a Patient Benefits You and Your Care Team

This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

I recently attended Digestive Disease Week (DDW) in San Diego, California as a patient advocate. The experience was much more than a conference—it opened my eyes to all the work being done on a global level to understand this disease, ease the burden on patients, and improve quality of life.

At DDW, I had the opportunity to sit down with Dr. Miguel Regueiro, Chair of the Department of Gastroenterology, Hepatology, and Nutrition and Vice Chair of the Digestive Disease and Surgery Institute at Cleveland Clinic, to discuss our respective points-of-view on clinician-patient communication. I share more about our conversation below, along with a video of part of our discussion. You can also find resources to guide your conversation with your own doctor here.

There’s something special about being a Crohn’s patient and witnessing firsthand all the research, advancement and dedication for inflammatory bowel disease (IBD). While the exact cause of Crohn’s disease is unknown, it is believed to be caused by an overreaction of the immune system. As a result, damaging, chronic inflammation can occur along the GI tract and lead to symptoms. Crohn’s isn’t contagious, and, as far as we know, it isn’t caused by anything a person has done or eaten.

AbbVie article

During my time at DDW, Dr. Regueiro and I had a chance to discuss the importance of patients and their physicians creating an ongoing, healthy dialogue about everything the patient is going through physically, mentally, emotionally, and financially.

We talked about the importance of goal setting. In this age of personalized medicine, treatment plans are tailored uniquely to each person’s needs, which often go beyond the inflammation in our bodies or our latest symptoms.

“When I meet a patient initially, I sometimes ask ‘what are three things you want out of this visit? What are the three problems that you’ve had?’ Some of it may be related to their IBD, but a lot of it might be related to ‘I’m feeling depressed,’ or issues with sexual activity and intimacy. As a physician, and as a healthcare team, we not only want to treat your IBD, we want to treat the whole person,” said Dr. Regueiro.

One of the biggest stresses associated with IBD can be the unpredictability factor and the progressive nature of the disease. As patients, we never know what the next hour or the next day will bring. Symptoms might worsen or change altogether. Physicians want to hear about changes. Changes in our symptoms. Changes in something that may be related to our medication. And changes in our health beyond our digestive tracts that help our care teams treat us and not just our IBD. By recognizing these changes, your doctor can address them and make sure there’s not a bigger problem festering.

Crohn’s is a lifelong disease, it’s not just about thinking about tomorrow or the next few weeks, it’s really looking at the long-term. If you live with IBD, 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. Create a proactive treatment plan and set goals that are right for you.

The narrative you choose to share with your care team can truly shape the type of care you receive and your ability to improve your quality of life. Prepare for your next trip to the doctor by visiting CrohnsandColitis.com for tips on managing your appointments and working closely with your gastroenterologist.

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.

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