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Has anyone with an ileostomy ever taken a bone med to prevent osteoporosis?

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Posted 6/8/2010 8:35 PM (GMT 0)
Hi,

Just got back from my bone density test. My spine is very near to osteroporosis state (though on the border of osteopenia) I will be asking about bone meds. I already take vit D, K and Hormone replacement (estrogen only). Eat lots of calcium

My question is, does any other ileostomate successfully take a bone med that absorbs and slows down osteopenia going into osteoporosis?

Anyone take any in shot form?

Am in no pain but don't want future spine fracture in addition to having ileostomy. Am 54 take dance lessons, and walk a lot. No underlying diesase. Have permanent ileo due to irreparable damage to colon and rectum in a surgery for a benign issue.

Any input appreciated.

Thanks,

Rosemary
Posted 6/8/2010 8:42 PM (GMT 0)
Rosemary, I've been on Actonal for several years for bone loss.
Posted 6/8/2010 9:24 PM (GMT 0)
Cleo35

Is Actonel a pill or shot? Any side effects? Has it slowed your bone loss?

Thanks, Rosemary
Posted 6/9/2010 12:57 AM (GMT 0)
     I already have osteoporosis due to prolonged use of prednisone over the past twelve years of suffering with ulcerative proctitis.  Fosamax and Actonel gave me terrible heartburn.  I don't need ulcers in my esophagus on top of what I have now.  I take two calcium pills with D a day.  I fell about five years ago and suffered a compressed fracture of the lumbar spine...very painful at the time, but I am fine now.  Weird, but I have no osteoporosis in my hips and the doctor said that is usually the first place it shows up.  Maybe because I always walked a lot.
Posted 6/9/2010 1:16 AM (GMT 0)
Interesting Christine. I walk a lot and my hips are great too. Sorry you fell but glad you healed. I guess we all react differently to all these new meds. Rosemary
Posted 6/9/2010 2:07 AM (GMT 0)
I am 28yrs. old. I have osteopenia from pred use. Well, at least that's what the bone density scan from 5 yrs ago said. I only take prenatal vit.
Posted 6/9/2010 4:07 AM (GMT 0)
i take a calcium pill with D most days, sometimes i forget, lol. But having taken the pred for so long, and another med i take also sucks calcium out, so its important that i do that.
Posted 6/9/2010 11:35 AM (GMT 0)
I was finding too many whole calcium pills in my output that I've gone to liquid...I don't have bone issues (that have been found yet) but I did have many years of pred use:(

I think someone on the site also uses the chewable caramel calcium ones...I might have to try those!!!

Being active is great to stay strong...but we cannot forget our supplements as we age shakehead ...boy I hate getting old!!!
Posted 6/9/2010 1:34 PM (GMT 0)
     OHIO..how old are you?   I am 63...hope to reach 64 in August..lol.
Posted 6/9/2010 2:04 PM (GMT 0)
Rosemary,

I don't have an ileostomy, but I don't have a colon and I've taken meds for acid reflux for years, which I think caused my osteoperosis.  I had osteopenia for a few years, took evista for 2 years because I couldn't take the phosphate drugs because of my acid problems.  After 2 years on Evista, my osteopenia went into osteoperosis and my legs were killing me.  I stopped Evista and all leg pain went away....I am currently taking extra calcium  and vitamin D.  My GYN wants me to have reclast and I was scheduled, but chickened out.  I plan to go ahead and get it later this year though. 

Has anyone had any experience with Reclast?

Posted 6/9/2010 2:14 PM (GMT 0)
Christine1946: I'm 42 :-)
Posted 6/9/2010 5:18 PM (GMT 0)
Janie, INteresting. WHat's good for one person is not good for another. Medicine is a crap shoot (pun intended). There is this site Ostomyland.com and one woman on there swears by reclast. Her name is Cal. I think she gets one shot per year and it helps. I have not been on that site for a long time as it does not seem that active any more, but it is very good. Kathy from England is moderator; she's very knowledgable. Cal is this nice looking red haired lady whose posts are very nice and informative; she posts her picture too. You may want to get in touch with her. Let me know what she says if you do.

Rosemary
Posted 6/9/2010 5:50 PM (GMT 0)
Rosemary,

Thanks so much; I will definitely check them out. I've heard horror stores about Reclast, but my dr. insists that's not the norm. Will be good to talk to someone who has had a good experience!

Janie
Posted 6/9/2010 6:50 PM (GMT 0)
Yeah Janie,

I have come to the conclusion that any med or any procedure no matter how good our research is totally a crap shoot. Medicine not an exact science is soooo true but on the other hand we can't just let our bones disintegrate. Plus, did you know that not having our colon to have colon flora makes us not produce vitamin K? I am currently taking 1000mcg of that per day. 10 x the daily recommended amount as my K1 was seriously low on a blood test. It is important for bones, heart, clotting factor too. The rest of Vit K comes from Green leafy veggies which I can't eat because I have the ileostomy stoma. There is some Vit. K in some milk but not a lot. Some ileostomates eat green leafy veggies but I've gotten food blockages from mashed potato and high fat cottage cheese so am not about to go eating broccoli (which I used to love sooo much).

There is soooo much to learn, but Cal has had great luck with Reclast. I think between all of us we can figure out how to live healthy without use of colon, but it is going to take all our knowledge pooled together. Glad I could refer you to her. Rosemary
Posted 6/9/2010 6:56 PM (GMT 0)
esoR: it's a once a week pill; I've been on it for several years with no side affects and the last scan showed improvement in my bone density.
Posted 6/9/2010 10:27 PM (GMT 0)
cleo35, Thanks I will check into it. Actual improvement in bone would be great. Rosemary
Posted 6/9/2010 10:47 PM (GMT 0)
Rosemary,

I went to ostomyland.com and boy was I confused. I tried to search for "Cal", or for "reclast" or "osteoperosis" but didn't find much at all. Do you know where in the forum you found the info??

Obviously I'm technically challenged:(
Posted 6/9/2010 11:00 PM (GMT 0)
Hi Janie, I will check it out for you as I'm online now. WIll get back to you soon. Rosemary
Posted 6/9/2010 11:32 PM (GMT 0)
Hi Janie,

Cal from Ostomyland.com has osteoporosis due to having had chrones and having to take steroids. Here are the meds they had her take for bones one at a time, then they moved her on to the next one: (She is from England)

1. Calcichew and Estrogen Patch
2. Alendronic Acid
3. Finally put her on an infusion of Pamidronate (supposed to last in the bones for up to ten years) she said it gave her a slight headache which went away by taking something right after the infusion. I will ask about this too but anything that lasts for that long, what if you had a bad reaction to it? Good Lord!

I can see why you couldn't find her. She was way back on page 6 under a question I had asked about osteoporosis meds. My name on there is rosemaryileostomy. (Creative, huh? :-)

Rosemary
Posted 6/10/2010 1:10 AM (GMT 0)
ha ha Rosemary, my name there is Janie!!!! You're much more creative than I am!!

Thanks for the info. I'm going to watch a little tv now, but will try to navigate through sometime tomorrow when I get home from my dr. appt.

At least now I feel better about the reclast!
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