So you have osteoporosis...along with Crohn's
Getting a bone scan. It's pretty simple when you think about all those with IBD endure for treatment, disease management, and care. All you have to do lie down on an x-ray table for a few moments. No IV. No dye. Nothing disgusting to drink. The scan is a piece of cake in that regard. I'm now 36 but have been getting bone scans since my 20's, thanks to my Crohn's disease and use of steroids early on.
Osteoporosis at a young age from Crohn's
I recently got scanned and the experience got me thinking. As I walked into the waiting room and was probably 30-plus years younger than everyone, I was handed a clipboard with some paperwork to answer some questions. It was the questions that made me open my eyes in disbelief. "When did you start menopause?", "Did you break a hip before age 50?" I felt like the entire questionnaire was geared towards people older than my parents!
At that moment, it made me think about how we can do so much better. When I had my first bone scan at age 26, five years into my patient journey, those questions would have upset me more. Imagine a teenager getting a bone scan?! They already feel out of place, this only adds insult to injury. With how common osteopenia and osteoporosis are for the IBD community, you would think medical facilities could tailor their paperwork accordingly.
Fun fact I learned this time around--if you wear pants or shorts with an elastic band or a dress, you do not need to change into a hospital gown for a bone scan! You can wear your street clothes. A small win, but hey, at the end of the day, it's something!
My results said normal, but they weren't really "normal"
I have osteoporosis in my lower back and osteopenia elsewhere. This is nothing new for me. But when I received the results on my patient portal, my GI simply wrote, "Normal." Of course, I was perplexed. Could the vitamin D, prescription prenatal, calcium, and folic acid I take for my malabsorption issues have reversed my bone loss?! I wrote my GI back asking if that was the case. She ended up calling me to clarify my results and said, "No, normal meaning your bone loss hasn't gotten better or worse."
Ok. As a physician, words matter and you should be crystal clear with the way you communicate with patients. If I wasn't a patient who advocates for myself, asks questions, and speaks up, I would think my results were completely normal, when in fact, I have osteoporosis and I'm in my 30's. To me, that's far from normal.
The importance of communication between doctors and patients
The way patients are communicated with and treated not only for bone scans but in general, matters. Compassionate care makes a world of difference. If we're made to feel like we're a number or a statistic, rather than a person, it hurts and is quite evident. Physicians aren't pulling the wool over anyone's eyes. If you talk to patients or nurses about doctors, everyone has their number and typically, the same perception of their relationships with those they treat. Keep that in mind and don't settle for care. Seek a care team that makes you feel cared about and understood.
Does exercising regularly help in the management of your symptoms?