Thanks for the info.
When I was on the prednisone, my ex-wife suggested taking Viactiv calcium supplements (they had just come out around that time). That's about all I did then.
Now I take MUCH more Vit D and my level is something like 47 which I think I'd rather have it up in the 50 or 60's as per Mercola. Crohn's is known for poor Vit D absorbtion and poor Calcium absorbtion. It must have been WAY low back when I would have needed it much higher.
Of late I had probably only been getting around whatever 100% RDA of calcium is -- mostly through multiple servings of Metabolic Drive plus what's in my vitamins.
It seems there's no way to tell when the bone damage occurred.
I do know that in April 2007 I was deadlifting 270 for 10 sets of 3. When I broke my rib in Oct 2008 I was struggling to deadlift 260 for 5 reps. I'm lighter than I was in 2007, so not being as strong is expected. But I'd think my bones should be as strong - unless the bones are getting weaker.
I have a friend who is a kidney specialist who was telling me that now when someone is even going to be on prednisone for 4 weeks he usually orders a bone density scan to get a baseline.
He also told me that he sees a lot of people with Crohn's who have kidney stones from being unable to absorb calcium.
So Crohn's disease, prednisone, low Vit D, low calcium, low Vit K (also associated with Crohn's), and low testosterone are all possible causes.
I have felt like crap since I got off the prednisone. I hated that stuff. I used to shake so much all the time that it was difficult to write. Ultra volatile temper too. And my face was unrecognizably fat.
According to wikipedia on Adrenal Insufficiency
One possible cause is
Discontinuing corticosteroid therapy without tapering the dosage (severe adrenal suppression with ACTH suppression)
I have no idea how long of a taper I needed after 4 years of use. I don't think I dropped ultra fast -- but I was pretty eager to stop it. I didn't get any guidance on that from my gastroenterologist. He didn't feel there was anything wrong with me being fat. I think that all you have to do is look at how fat I was and it's clear that that's wrong.
I do know I told him I felt exhausted all the time. And he didn't think there was anything wrong with that. There's something wrong with my bloodwork -- and it probably could have been caught in 2002 instead of 2009.
To understand me better:
I entered the hospital in Feb 2002 after not having eaten for a month. I was rail thin. This is after that first hospitalization -- all weight gained from IV steroids and glucose, no eating food. That photo is not even my worst. I had about another 20 days in the hospital after that in which I got even fatter, also while not eating any food. To the point that I couldn't walk. There weren't any photos of me like that because everyone was expecting me to die. It was YEARS before I lost enough weight to even be able to fit my wedding ring back on. That's fat.
This is a current photo. While I look better, I don't think it looks like I lift weights and I still have a bit of a belly. It's taken me years to make progress that I regularly see other people do in months.
Despite that I've put in a lot of personal effort to get myself healthier, I've yet to run into a doctor that wants to see me do that. Mostly they treat me like I'm supposed to be fat and weak and sickly and anything I want to improve is just a waste of time.
I'm so frustrated with doctors at this point.
A funny point that makes me want to be prepared to deal with my endocrinologist and find a backup: When she discovered I had low testosterone, she accused me of using steroids and thus having killed my natural production. Do I LOOK like I've been on steroids, with those huge bulging muscles I have? C'mon. I've seen plenty of guys on this site accused of using, and they don't look like me.
I find this a lot like my problems with gastros -- the first rule of medicine is to blame the patient. The second rule is it is OK for your treatment to cause problems for the patient -- as long as the new problems need to be treated by a doctor with a different specialty.
Everything I'm reading about all this hormone stuff suggests that it's very easy for a doctor to seriously mess you up. I've been being messed up by doctors since 1992 and I'd love to be done with it for a while.
I guess I'm ranting a bit 'cause it's 1am and all I'm doing is more and more research on this because I can't see trusting the endocrinologist to be competent. I have no idea what doctors go to school for if you can't trust them to be competent.
To end on a brighter note - thank you to both brentf13 and KNB. And to anyone else who chimes in with any suggestions. I'm hoping that the more good questions I can hit the doctor with, the more likely I won't wind up with even worse problems.