Vitamin D deficiency

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peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 8/5/2007 3:22 AM (GMT -6)   
I am new to this forum, so excuse if this has been covered here.   I have an ileostomy (since 1984).  A few years back I was diagnosed with Osteopnia, increased Calcium supplements.  Then it progressed to Osteoporosis.  I finished a 2 year Forteo injection treatment and it did work wonderfully for me.  DEXA shows I am almost back to normal bone density. 
 
Now, for my question - I have been taking calcium and D, A & D, and multivitamins orally for several years.  Just after finishing Forteo, labs showed a pretty severe deficiency in  Vit D. - hard to believe - but the calcium levels were fine.  Gotta have D to transport Calcium to the bones.  So I increased the supplements.  Labs 2 months later showed very little improvement.  Just had another set of labs drawn after experimenting with "sun" therapy.  Awaiting the results now.  I sure don't want to see the 2 years of daily injections of Forteo go down the drain because I am not absorbing the D. 
 
Does anyone know of any other way D can be administered? Dr mentioned we may have to do something by way of RX.   Have you experienced or know of someone that has experienced this deficiency and what did you/they do?  I can tolerate dairy products and cereals fortified with D just fine.  Just don't seem to be absorbing it.
 
HELP?!  I would appreciate any and all comments, suggestions.
 
Thanks in advance,
P

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/5/2007 11:42 AM (GMT -6)   

Phompeye

I know someone that is currently doing the Forteo injections. He's also deficient in vitamin D and is on an Rx for it.


Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Status post colon resection, but now heading towards a subtotal colectomy in September.
Son diagnosed with Crohn's at 17 (now 20). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 8/5/2007 12:16 PM (GMT -6)   
Do you know if it is an oral RX or an inhaler or an injection?  Just curious.... 
 
Does he have an ostomy or any digestive issues?
 
Thanks for any info you have.
 

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/5/2007 6:07 PM (GMT -6)   

Phompeye

It's oral vitamin D. No ostomy or intestinal issues. His wife just noticed that he was getting shorter so he had a DEXA scan that revealed severe osteoporosis and two fractures. He's about 55 years old.


Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Status post colon resection, but now heading towards a subtotal colectomy in September.
Son diagnosed with Crohn's at 17 (now 20). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/14/2007 2:10 AM (GMT -6)   

Irish_Mom ,

Just thought I'd let you know. since you responded to my very first post back in August, the outcome of my visit with an Endocrinologist re: Vit D deficiency.  I guess it is not at all uncommon for us Crohnies and Ileostomates to be deficient in Vit D. 

However, since I have been battling osteoporosis and responded extremely well to Forteo injections, the docs wanted to be sure that I was on the right track to being able to maintain good bone density on my own.  Not!  Originally, they just thought a lot of my bone density issue were related to being post menopausal since age 26. 

Now, I am on RX for Vit D - 50,000 IU one time per week for 3 months, repeat labs at end of 3 months.  Maybe start Reclast IV - a drug similar to the Boniva, Fosomax drugs which my stomach hasn't been able to tolerate, and I still have the absorption issue. 

You mentioned someone you knew on Forteo/Vit D RX - how's he doing?  Any improvement?

Thanks for listening...


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/14/2007 9:59 AM (GMT -6)   
Thanks Peggy,

See, I learn something new every day. I didn't know you could get injections of this class of drug, and since between the meds I've been on for years, short bowel and genetics I worry about osteo (I get tested every year), and know I won't be able to tolerate these drugs by mouth.

Keep us posted with how you're managing your issues, this is/could be a very big issue for many ostomates and Crohnies.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/14/2007 10:16 AM (GMT -6)   
Forteo has only been on the market for a couple of years.  It was my last opportunity to try "something" to reverse the high risk range of osteoporosis.  The injections are painless.  They come in a pre-filled pen.  All you do is prime it, dial up the dosage, and slap a new needle on the end of the pen.  Needles are like insulin needles.  More of an annoyance to remember to do it!
 
RECLAST is the name of the new drug recently FDA approved here in the US. It has been developed for those of us that cannot tolerate the Boniva, Fosomax drugs due to digestive tract irritations.  It is an ANNUAL IV infused slowly but very costly.  However, the dr's office did say that Medicare has approved it for use.  We are in the pre-approval stages with my ins carrier, BC/BS, to see if they will cover it.  I guess it runs around $3,000.  per infusion. 
 
Judy, I definitely agree about many Crohnies/Ileos possibly having these issues.  I never even gave it a thought, but I'm glad that my Endocrinologist has taken me on as a challenge, and I am certainly that for him.  It's not a life threatening illness, but I want to protect my bones from possible breakages as I age.  It's definitely and Absorption issue.
 
Thanks for listening,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 10/14/2007 5:38 PM (GMT -6)   

Peggy

This is kind of funny. After this thread, I ended up being put on an rx for vitamin D as well. LOL  I was started on 50,000 IU weekly for a month and then monthly for two months and then more labs to follow. I also take Actonel.


Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's and UC at 17 (now 20). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/14/2007 6:10 PM (GMT -6)   
Well Terri - give it up.... how are you doing on the D?  Have you had any labs drawn to tell you how your levels are with the RX?  Did you have any nausea with the rx for D?  I had the  watery mouth nausea thing last night for about 3 hours.... woke me up after I had been asleep for about an hour or so.  I was up most of the night.  Next time, I think I will take vistaril or phenergan.  I hate being nauseous.
 
My RX is to take 50,000 one time a week for 3 months.... sounds like you are taking a little less during month 2 and month 3.
 
Can you tolerate the actonel ok?  I seem to have issues with my stomach, like really bad stomach pains, when I tried the fosomax.  It may have had to do with the ulcer I had at the time, but I'd be interested in hearing how the Actonel is doing for you?
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/12/2007 3:18 AM (GMT -6)   
Terri ---

I'm bumping this .... see previous note from me.

Thanks,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/12/2007 9:17 AM (GMT -6)   
I'm curious as to why your doctor would tell you to take an oral vitamin D supplement. Obviously you've become deficient because you're not absorbing the vitamin?
Judy
49 years old, Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/12/2007 10:12 AM (GMT -6)   
Judy,
 
I think this is the last ditch effort to be sure that it is really absorption issues since the next step would be IV infusions (?)  if there is such a thing.    Do you know anything about that?  I'm hoping that this oral dose will work.  The endocrinologist said that once your levels drop, it is really hard to get them raised again.  My D, 25-Hydroxy is low, but my D, 1,25 Dihydroxy is ok (actually on the high side).  Any thoughts on that?  And my calcium levels are fine.  Just another "challenge", huh?!
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/12/2007 11:26 AM (GMT -6)   
Peggy,

No, I don't know much about vitamin D except that I've never had issues with it until I stopped spending all day in the sun with my horse (I sold her). My last blood tests came back "normal" according to my doctor, but I'm not sure what he means by that, lol. I'm waiting for my copies of my tests, I get copies of all my records.

I hope the oral works for you, if not maybe you can find a "solarium" somewhere close to where you live, sounds like a good small business to get into, lol. I live in San Diego, so it really shouldn't be an issue for me except that I've really not been outside for any length of time in quite a while now, no reason to.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 

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