Hello everyone,
I am a 23 year old female, 3 weeks ago I was diagnosed with Crohn's disease. My doctor sent me for a bunch of tests and it came back that I also have Osteopenia (found out a few days ago).
I've been trying to do research on it, but the majority of the information is directed toward post-menopausal women. And I was wondering if anyone had any advice or information with Crohn's related Osteopenia, or anything on the disease regarding someone in thier 20's.
From anyone who has had this for a while- what I should expect.
I am new to all of this- and I am really in the dark and a bit scared, so I just want to educate myself as best I can.
Thank you so much for taking the time to read this, and if you have any advice at all- it would be greatly apprecaited.
:)
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Crohn's and Osteopenia
- By JacquieS
- Posted February 12, 2009 at 10:30 am · 3 replies
- In Osteopenia (low bone density)
- Shared with the public
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- By Tom-WI
- Posted February 12, 2009 at 1:44 pm
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Hi Jacquie,
I'm on the other end of the age and gender spectrum from you. I acquired severe osteoporosis due to being an undiagnosed celiac for 60 years. The malabsorption prevented my getting enough calcium, among other things. I'm wondering if the Crohn's may have affected your absorption of nutrients too?
If you haven't already, you should see a specialist for the osteopenia, because you are so young. You're about the age when we are supposed to reach our peak bone mass. From my limited knowledge, the osteo is the least of your two problems, but still very important.
I am very sorry to hear you have Crohn's, and I'm hoping that you don't require too much steroid medication, which would negatively affect your bone mass. Good luck to you,
Tom
- By JacquieS
- Posted February 12, 2009 at 1:54 pm
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Hi Tom,
They originally thought that I had Celiac's- however after doing a colonoscopy and gastroscopy they concluded that I had Crohn's Disease- which did affect my absorbtion of nutrients. I have been ill for 2 years and have seen dozens of doctors but none of them took the time to look further- they just chalked it up to what I ate- because I was always 'too young' to have something wrong.
Until my most recent doctor performed the colonoscopy and discovered the Crohns. She was very thorough- I was sent for a few different tests to make sure everything else was okay. The Crohn's had affected my nutrient absorption because they found that I was anemic and have osteopenia.
I am on Entocort for the Crohn's; since this is all only been about a month for me I am new to it all- and I am now concered that the Entocort for the crohn's will affect the osteopenia. Damned if I do, damned if I don't kind of thing.
Tom: I can't imagine going that long undiagnosed- I've found that when it comes to the stomach people so easily brush it off as nothing- doctors AND non-suffers, due to a lack of understanding- which is really unfortunate.
Best of luck,
Jacquie
- By DebRN
- Posted February 13, 2009 at 9:18 am
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Hi Jacquie, My daughter (18) was diagnosed with Crohn's in 2003. Until she found her "magic bullet" - Remicade - her absorbtion capabilities were severely impaired. Her initial Bone Densities were very scary. It took about 9 months of trying many meds and med combos to find a med that would get her into remission and healthy again. Remi has changed her life. Her Bone Densities are perfect and her Vit D levels (nonexistant before) are now normal. She is healthy in every way and has stayed so despite a few gliches along the way.
Crohn's is a strange disease in that everyone is so different and therefore, no one med works for all. Once your Crohn's goes into remission, your body should again, find the time to work on other things - like keeping the rest of you healthy.
I would caution though that Entocort is a Steroid and many of us with Osteo are there because of Steroid use in the past .The other thing is that Entocort will get you into remission but is not designed to keep you in remission. You need to go up a level (or more) on the "Crohn's Getting into Remission Scale" - Pentasa or Imuran for example. My daughter has, in her arsenal of those who keep her well, a GI, an Endochrinologist, and a Dietician. They all talk regularly and are all on the same page as far as treatment goes. Here's hoping that your own personal army includes a variety of folk whose scope of practice will cover you from all angles.
It took awhile for both my daughter and myself to come to the separate realizations that we are no longer defined by our diseases - her: Crohn's and me: Ostoeporosis. They are but a small part of who we are.
Deb
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