Finding the Right Medical Team for Crohn’s Disease

Over the 19 years that I have lived with Crohn's disease, I have learned a great deal, but one of the most crucial lessons is the importance of having the right medical team. While I have been fortunate enough to avoid any major issues due to inadequate care, it has been essential for me to connect with healthcare professionals who not only understand my needs and values but also provide the necessary support. In the hopes of aiding others in their search for good care, here are a few things I have discovered along the way.

Firstly, it is perfectly acceptable to explore different options and shop around for the right fit. Just as I, as a tall woman, need to search various stores for clothes that fit me well, individuals with inflammatory bowel disease (IBD) may need to do the same when it comes to finding suitable medical care. Each person is unique, and what works for one may not work for another, especially when dealing with multiple medical issues. For instance, I once met with a primary care physician who specialized in women's health, hoping that she could refer me to an OB/GYN to address my Crohn's-induced amenorrhea. Unfortunately, her dismissive and off-putting comments led me to report the incident to the clinic. I promptly found someone who treated me with more respect and earned my trust. If you feel that your doctor is not the right fit for you, do not hesitate to keep searching until you find one that is.

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Secondly, it can be beneficial to seek specialists who share a similar cultural or religious background. As a practicing Muslim, there are certain practices I struggle with, such as fasting during Ramadan. While my non-Muslim gastroenterologists were sympathetic to the importance of my health, they did not fully understand the guilt I felt about not being able to fast. Fortunately, I now have a Muslim gastroenterologist who understands my religious obligations and supports me accordingly. The same goes for my therapist. While my previous therapists were excellent in addressing my needs at the time, I have recently desired to focus more on the cultural barriers I face as a Middle Eastern woman living with Crohn's and to enhance my spiritual practice. My current therapist has been incredibly helpful in navigating these aspects of my life.

Lastly, navigating healthcare in the United States can be challenging, so it is crucial to have a team of doctors and nurses who can advocate for you. I take medication every other month that is incredibly expensive, and insurance often does not cover an adequate portion of it, if at all. I had one former insurance company that only covered part of the medication, which meant that I had to pay $5,000 out-of-pocket for it to be delivered to my house. Despite my doctor's office attempting to work with patient assistance programs, nothing changed. Eventually, we came to the conclusion that the best option was to have the medication sent directly to the office where I could pick it up. While this was an unusual and inconvenient arrangement, it was done solely with the intention of helping me.

This is not an exhaustive list of the necessary traits to look for in a medical team, as every individual's requirements are unique. However, at the core, effective communication and trust are the most vital factors, and these can only be achieved by actively participating in your own care. It may take a significant amount of time to find a team that aligns with your preferences, but the effort is undoubtedly worthwhile.