My endocrinologist wanted me to get a DXA scan; I had just had one a year prior and thought it odd that she wanted another one so soon. I saw her last week to go over the results. In less than 15 minutes I was told I had osteoporosis, given a choice of two medications, and sent on my way.
Once I returned home and was alone with my scrambled thoughts, I went straight to the computer. I googled osteoporosis, I googled the medications she offered, I googled until I had about a dozen tabs open!
Full disclosure: This isn’t my first rodeo with bone density.
About 14 years ago, when I was new to Crohn’s and all its wonderment, my GI doctor was concerned about my prednisone use and mal-absorption issues related to the Crohn’s so he ordered a DXA scan. I was skeptical but the scan confirmed osteopenia in my hips and osteoporosis in my spine.
He advised that I get serious about taking supplemental calcium and vitamin D and he started me on Actonel, a medication that most women don’t start taking until they are in their sixties, I was 37. Actonel wreaked havoc on my upper GI tract and I ended up with damage to my esophagus because of it. That led to more meds, enter PPIs (protease pump inhibitors), namely Prilosec. After two years of supplements, Actonel and Prilosec, my bone density improved. Against my doctor’s advice, I stopped taking the Actonel. I could no longer tolerate the burning in my throat. I ended up needing the PPIs for another six years. I was anxious to wean myself off of them because… they can interfere with calcium absorption and… drum roll please… may lead to developing Osteoporosis! I had to jump off that medication merry-go-round for sure!
I had been doing fine since then, every DXA scan since then has shown minimal bone density loss. I admit that I had kind of known that menopause could open up the door for accelerated bone loss and potentially osteoporosis but I wasn’t ready (I’ve been flirting with menopause for the past three years!).
Of course I blamed myself.
I blamed myself because of my crappy diet and non-existent exercise routine. I blamed myself for being cavalier with my calcium supplements. I was also miffed by the lack of support from my doctors that are supposed to be caring for me. My GI doctor, GYN doctor, and my endocrinologist all want access to my DXA scan results yet I’ve never had a thorough discussion with any of them about forming a plan if I ever were to be diagnosed with Osteoporosis. And now that I have the diagnosis, it seems like none of them have anything valuable to say.
This diagnosis was the last straw; I can no longer do this alone. So I did something that I am not good at, I asked for help! I called my insurance company and asked about case management. I found out that they have a program and that I qualify. I now have a nurse case manager that is helping me manage my care, I have spoken to a pharmacist about drug options, I have spoken to a social worker that is coordinating my mental health care and is helping me find a therapist. I am hopeful to get a dietitian and physical therapist on board to help me with diet and exercise.
My advice to all Crohnies who have been on steroids, especially the woman approaching menopause, is to discuss bone health with your doctors.
Ask about osteoporosis, and if appropriate, get a DXA scan. Don’t let anyone fluff you off. And if you have insurance and are feeling overwhelmed, check to see if they offer case management services. I am super hopeful for the future now and am very grateful that I found them; I would have never known the program existed if I hadn’t asked.