The process of creating this blog has generated a lot of thought and reflection on my experiences with Crohn’s disease. It’s brought back some unexpectedly strong emotions too. Today I picked up x-rays from my last small bowel follow through. I’ve never before had copies of my films. I wish I had them all and regret that I don’t.
Whether you’ve realized it or not, having Crohn’s disease gives you a life-long project. You will have to be your best advocate. No physician will know you as well as you know yourself and you will have to make many decisions regarding your care. One of the best tools for making decisions is to have your complete history. You should keep a journal of your experiences for a first person account. You should also get copies of all your medical records including x-rays, charts, test results and even things like colonoscopy videos. The combination of the two will give you perspective on your care and well-being and aid in your decision making.
Of course, specific records keeping policies will differ between institutions, but the key here is to get copies of your records, etc. soon after they are performed. Records take up physical space and they cannot keep them forever. For instance, they will keep x-rays for only so long. You however, can keep them forever.
Another reason to have as complete a record as possible is the simple fact that you will most likely be treated by multiple doctors, hospitals and clinics. Imagine walking in to consult with a new GI for the first time and handing that doctor a complete, condensed history. In my experience, the physician is glad to get it.
Patient – know thyself.