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A topic I think doesn’t get enough attention: Crohn’s, menopause, and Osteoporosis

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    4 months ago

    This is a great post. Thank you for sharing and I’m sorry for all that you have to deal with. IBD is not easy and we all have to stick together. I will be getting a bone density test done soon! I’ve been on prednisone so many times over the years for up to year straight at one point. I need to check this out immediately.

    Always dancing,
    Elizabeth (inflammatoryboweldisease.net team member)

  • Having Faith
    2 years ago

    I can totally relate. From age 9 to 36 I was treated with steroids for every flair. The good news is now they have steroids that only affect the GI tract. I have arthritis issues and kind of feel like I’m falling apart since menopause hit. Best of luck to you! Take care.

  • Glycolysis author
    2 years ago

    Hello Having Faith,

    Thank you for reading my story and adding yours! It is frustrating to think about the past and wish I had known more information or had asked better questions about the medications I was being given. I am thankful that at least a few of my doctors were proactive enough to insist on the DXA scans.
    And yes, I too feel like I’m falling apart since menopause. Hoping for much healing and wellness for you!

    Sincerely, Kelly

  • 2 years ago

    Dear Susan ,
    yes I too believe that being a woman with crohn/ ibd/ ulcerative colitis , there isn’t enough medical or spoken in this area
    . I was informed just recently that crohns and menopause cause so much havic to our physical and mental state, lower immune systems make us more likely to have various complications ie , abnormal Pap smears ,through to gyno cancers.
    I’m currently in menopause but now have Cronic vaginal pain ,regular clots and the list goes on , 14 months nothing then this bam on my butt yet again.
    I’ve got rheumatoid arthritis which is hell above crohns, my back has fused at the bottom 3 vertebrae due to medication, had melanoma twice and shit like you not enough from the medical profession is shed on all the risk factors of this ultimately cruel disease.
    My eye sight used to be perfect now I’m wearing glasses 90% of the time and sunglasses when ever out doors.
    I was diagnosed in 2007 and have been through operation after operation , and still I’m limited on wher I go and what I do,our immune system sux and yes I missed my flu shot due to gps neglect to read her notes , I feel like a broken record at the Drs , gyno, gastro,and rheumatologist,frustrating yes.
    So yes let get on board and get them to be all more aware that no case is text book and we are all unique with our disease.
    My Drs are all informed by an e health link but do they compare the notes nope.
    With all said I wish you better health my bumby friend and I hope that one day all questions will be answered for us all .
    With love your new Aussie mate Bec xoxo

  • Glycolysis author
    2 years ago

    Hi Bec,
    Thank you for sharing your story with me and the rest of the forum. While I wouldn’t wish this crap on anyone, it is soothing to know that I am not alone. We have got to get the word out there that IBD in women presents extra challenges as we age.
    For myself, I have chosen not to pursue going back to work and am spending more time on taking care of my self and my household. It was and still is a very difficult decision.
    There are days when I feel well enough that I think, I should be out there working at a job but unfortunately, I have more days where I feel like poo and can barely get out of bed.
    Where in Aussie land are you? I was in Australia in 1998 for my Honeymoon!

    Love, Kelly (Glycolysis)

  • SusanHU
    2 years ago

    Thank you for sharing Glycolis! We have heard from many community members that these are important issues! I hope you will hear from other IBD folks but in the meantime, I wanted to share a few articles you might find interesting:

    https://inflammatoryboweldisease.net/living/pause-for-menopause/
    https://inflammatoryboweldisease.net/living/bone-density-ibd/

    Please keep us posted on your journey! We’re here for you! – Susan (InflammatoryBowelDisease.net Team Member)

  • Glycolysis author
    2 years ago

    Hello Susan and fellow Crohnies,

    I will be starting physical therapy next week in hopes of learning some safe and effective exercises that will help me improve my balance and gain strength!

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