Another 10% bone loss - so talk to me about osteoporosis treatments

I did a quick look up on PubMed, and the publications on the various treatment options are all over the place - bisphosphonates still appear to be favored over other treatments, including denosumab (a monoclonal antibody), and one paper said the jaw necrosis was not a significant problem for either at dosages used for treatment of osteoporosis, which I presume are lower than dosages used in cancer therapy.

Julie, I think I've asked you this before, and I honestly can't remember the answers:

1) Did you have these issues before your DS?

2) Do your doctors think it was caused by or is being made worse by your DS?

3) Are you considering revising your DS to enable you to ameliorate your osteoporosis? 

I certainly would want to see if osteoporosis treatments would help, but if they don't, what next?

Not taking bisphosphonates. 

I see what my mom is going through with untreated osteoporosis and what my friend's family member--who no longer HAS a jaw--has been through WITH treating the osteoporosis and I don't think there are enough pages on pubmed to convince me otherwise.

Bisphosphonates give me the willies!!!

Yes, I am curious to know the answers to these questions as well, especially whether or not this is being exacerbated by the DS? Does bone loss just come with the territory of having a DS? Just weighing the options betwen getting diabetes or getting a dowager's hump.  Honestly, I haven't read much about osteoporosis as I am not yet a "woman of a certain age" and it hasn't crossed my research path yet.

SOME bone loss is inevitable, both because of weight loss and because of getting older.  Bone is a "use it or lose it" organ - and I say organ because it is metabolically active.  If you weigh less, your bones don't NEED to be as dense as they were when you were heavy, and so they shed some of their density that was increased to support your weight.

But if you are having trouble absorbing calcium, vitamin D or other nutrient that is necessary to maintain bone health, then you may have additional trouble post-DS.  Presumably you can overcome it by upping the missing nutrient(s), but it seems in a few cases, it's more difficult if not impossible.

 Hi Diana:
1)  I do not know if I had these issues before the DS or not.   My surgeon's office didn't even test pre-op for D and such, and I was still considered below the age risk for DEXA's, etc.

2)   One endo doc I saw (the vitamin D specialist who ended up disappearing on me - I think he went back to India maybe)   told me that he thinks I might have some sort of predisposition to Vitamin D malabsorption, and he told me it can be hereditary.   He said he's never had anyone have such a tough time absorbing D as I have, and he's treated several duodenal switch patients with much higher PTH's and lower D's than mine.   He feels that I am absorbing some calcium - another thinks I'm absorbing none.   As I mentioned in a subsequent response, my mom does have osteoporosis, but it's thought hers is from steroid use - she is 72, and large-framed.  I am not.   It is unknown whether my grandmothers had it, because both died at young ages (43 and 58).     

3)   At one point my surgeon suggested lengthening my limbs to see if this would help.   The disappearing vitamin D specialist felt that this would not be all that necessary or helpful, because of where in the gut calcium absorption takes place, but disappeared before he could come up with a solution to how we can fix this!    Apparently, lenghtening the limbs can help D, but not as much with calcium.    At one point I had emailed with Dr. Husted (back when he was in Kentucky and still thought to be a rather stable surgeon) and he recommended an ilieal transposition to correct calcium deficiency.    When I mentioned this to the endo doc, he HIT THE ROOF and said "That is experimental - they are performing that surgery on animals."     However, I just did a bit of a Google search, and came up with a few articles, that I've yet to peruse thoroughly, discussing it as an option for diabetes cure in non-obese individuals, and as an effective "high gut" solution, coupled with a sleeve, for weight loss.

The technician who did my scan the other day, who is likely not the most qualified person I've discussed this with, feels that based on the scores I currently have, and the trajectory from my first two DEXA's, that my bone loss is manageable,  and that she's seen some pretty dire cases improve with bisphosphonates.     So, I am in the process of receiving referrals to yet another endo, hopefully one that will not disappear, and I'll find more out soon.    

Julie...how long ago was this..."3)   At one point my surgeon suggested lengthening my limbs to see if this would help.   The disappearing vitamin D specialist felt that this would not be all that necessary or helpful, because of where in the gut calcium absorption takes place, but disappeared before he could come up with a solution to how we can fix this!" and has ANYTHING gotten better since the D-guy disappeared?


I'm concerned that Kemmeter may be giving you life-saving information and you might be looking for something else when there IS nothing else.

I say that because you are SO young to be having all these problems...and I was having a heart-to-heart with my PCP the other day about my concerns that my mom can't tell if it's 3:00 am or 3:00 pm...and by whom and how will my special needs be managed when I'm her age, assuming I live that long.  We discussed the fact that, if malabsorption effectiveness becomes too effective for the body you have at the moment, lengthening of the channel might be the best way to go.  (And because there is apparently a lot of age-related malabsorption to deal with as well, which is why old folks often shrivel up and get way skinny.  What I'm "seeing" from here is that the level of malabsorption that your body has developed may make you way old way too soon.)

At the age you are, you are you dealing with stuff that sounds more severe than anything I have to worry about and you are so tiny and maybe you COULD deal with weighing 20 pounds more if you could have your health back?  I know there are no guarantees, but...





For any anti-DSers who are lurking...I am NOT saying that my DS was a mistake or that I want it reversed.  I AM saying that it has helped me live much longer than I thought I would...I retired on disability almost 15 years ago and was supposed to be dead by now...and now I am thinking of how to handle this very powerful surgery into my VERY old age.  Any anyone with any malabsorption should think about that for at least a moment, imho.

 That's a valid point Sue, and it's one I have to weigh carefully.   I saw him at a DS event a couple of weeks ago, and we discussed the D/PTH issue.   He did not bring the limb lengthening up at the time - we talked more about the D injections.   It's my understanding (and someone correct me if I'm wrong) but I can lengthen my common channel till the cows home, and it's not going to do THAT much to help my calcium malabsorption, because that takes place higher up, and he can't mess with that part of the duodenum easily.   That's where Husted's suggestion of a "high ileal transposition" came in....but I just don't trust Husted.....and Kemmeter had never heard of this procedure.   

Now, I'm NOT making excuses....but....I'm not that small by the way....for my frame I look proportionate, and I've got meat on my bones, but nah, I wouldn't freak out at 20 more pounds.    There's no guarantee that a lengthening will even solve the problem, especially if I have something bigger than surgically-induced malabsorption going on - such as the Vitamin D receptor problem.     I'd like to at least try the D injections and strontium to see what happens.    The paper that Steve linked shows some pretty good data.  If THAT doesn't work.....that could be a clue that this D thing isnt' caused by my shortened gut.   At any rate, I've been complacent for a year (not about my vitamins, but about seeking out a new doc) and I need to start putting myself on the right course.    

Just keep an eye on the overall result instead of focusing on one lab result at a time...I'm telling ya', these skinny, frail, weak little old ladies where my mom is...the ones with bones everywhere and hunchbacks and dentures...that is NOT my goal.

I am, however, disappointed to hear that comment about the calcium.  Not disappointed so much as in denial. 

Anybody know where to find the graphics--there were a couple floating around--that showed the areas in the digestive tract where everything is absorbed?

I just tried to cut and paste a power point shot of nutrient absorption but it's not letting me.    Both calcium and iron absorption take place way up high in the duodenum - just below the stomach.   D and the other fat solubles take place further down.   I guess that makes sense as to why I have to get infusions too, and as to why the endo and Husted both said it's too high up for a limb lengthening to affect it.  

It's my understand that right now my bone density is not horrid - yeah, I'm osteoporotic in the hip but it's still at a pretty manageable level.   The big key, as you mention is looking at the big picture.  How am I going to improve my calcium absorption for the long haul - how am I going to keep this from getting worse?    Even though I'm 50, I don't appear to be anywhere near menopause (my mom didn't go through it until 60!) but that's a good thing.   The longer I can keep having periods, the better, according to the endo doc.    When my ob-gyn suggested performing a hysterectomy and removing my ovaries along with my uterus, I almost chewed his head off.    I still have follicles on my ovaries, and am producing eggs.   I opted for an ablation instead.    I don't need that big of a drop in estrogren production right now, for sure.

I'm eager to hear how your DEXA results come back.