My [Lack Of] Bone Density with IBD

I’ve been having severe back pain for a while so my doctor ordered a bone density scan (also known as a DEXA scan) to make sure everything looked alright from that standpoint. In the office when we were discussing this, he said if something showed up on this test, it would be great to know now so we could possibly reverse it and treat it before it gets any worse.

I honestly did not think anything would show up.

I love my doctor and trust him completely, he made a very compelling case as to why I should have the test done and I did know this scan was nothing compared to some of the other tests I have had to endure. This particular doctor is also the most sensitive doctor I have currently. In discussing certain other unrelated things, he kept honing in on how he didn’t believe certain treatment options were right for me given my PTSD (post traumatic stress disorder) related to all of the medical things I have had to endure and that he wanted to work hard to find less invasive ways of dealing with things. I know that is how it should be but if I was any other patient, these so called invasive ways of proceeding would be a lot easier FOR HIM.

For example, giving me injections in his office would be a lot easier for him than prescribing numerous pills and getting phone calls from me about side effects, dosage adjustments, etc. I feel safer handling things this way and I greatly appreciate how much he respects that.

Anyway, when I finally spoke to my doctor on the phone, he started off with “Well, it isn’t the worst thing in the world…” which shocked me given as I said before, I didn’t think anything would come out of it.

He proceeded to tell me I had osteopenia (kind of like pre-osteoporosis) which is:

A condition that occurs when the body doesn’t make new bone as quickly as it reabsorbs old bone.” -Thank you Google for the simplified definition.

My doctor went on to tell me how he wanted me to begin a medication to help try and reverse some of the effects as soon as possible. He went into all of the side effects and also how this pill was known as a true “horse pill.” So much so that I cannot lay down for 30 minutes after taking it since it can impact the esophagus. There is an IV form of this medication that I would get in his office once a year but apparently I would have to fail off of the oral medication before insurance would approve that type of treatment.

I got off the phone completely overwhelmed.

My first thought was to find out what other people’s experiences were with this medication. I also wanted to join a closed group on Facebook for people with this diagnosis (assuming there is one; I never checked) and start posting questions about people’s experiences with osteopenia. Was it able to be reversed? Did the majority of people who suffered from this end up developing osteoporosis? There were just so many things I wanted to know.

Then I stopped myself and remembered what I would tell anyone who was just diagnosed with something new… Google if you want but do it with the understanding that we are all different. And, posting a question like “What have people’s experiences been with {insert name of the medication}?” would have been the worst thing for me. I would be getting 50 different responses and at the end of it, I still would have no idea how it would work for me – and probably be more frightened in the process.

I used to feel badly for people in IBD closed groups who would post things like “Did anyone have side effects from Humira?” because I just knew that person would end up being so, so frightened. The horror stories stick out a lot more than the people who say they are doing well, understandably. We start thinking the worst and it messes with our heads and oftentimes can prolong us doing the very thing we need to do for our own health – starting a medication.

For those of you who are newly diagnosed inflammatory bowel disease patients, I share this because I think I forgot a bit how difficult it was in the beginning to navigate all of the information. I know it is in most of our nature to reach out and ask others what their experiences have been. It helps us feel less alone in a very scary and new situation. As you begin to understand inflammatory bowel disease more and how YOUR disease impacts you, it will get easier to figure out the whole navigation part. Trust me, it will. I know it just takes so much longer than we would like and the frustration and despondency can really creep in.

I get it.

For those of you have had too many experiences with Crohn’s Disease or ulcerative colitis already, I wanted to share this because I am very grateful I had this test done. While I do not believe it is the source of my back pain, I am so thankful I caught something early enough to hopefully reverse it and help my future. *knock on wood*

I am not a physician but I highly recommend asking your doctor about a DEXA scan if:

  • You have been on prednisone for any significant length of time
  • You have a smaller frame
  • You are female
  • You have a family history of osteoporosis
  • You have issues with absorption and diet

We all go through so much as inflammatory bowel disease patients and while I certainly do not want to add on another thing for you to worry about, I also feel it is my job in a way to share the experiences I have had that I think could truly help someone else. And while osteopenia is not related to IBD, I know I would not be dealing with it had I not been diagnosed. So, in an indirect way, it sort of is related.

I also want to add that this test was very easy and did not take long. It was just the tech and I in a single room where I laid on my back for the scan. She kept positioning me in various ways but that was it. No contrast of any kind (IV or oral), no needles, no feelings of claustrophobia like an MRI can be, and no pain. I didn’t even need to hold my breath like lots of those machines scream at you to do. 🙂

Have any of you experienced osteopenia? Ever have a DEXA scan? If you have been on prednisone, has your doctor ever brought it up? The more we share, the more we can potentially help others.

And I do want to re-iterate, this article was not meant to scare anyone or cause anyone to feel more overwhelmed. You don’t need to jump up and try and schedule this test ASAP unless you feel it is necessary. I believe it is just something good to keep in the back of your mind until you see or speak to your doctor again.

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.

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