My vitamin D is plenty low, but I’ve slowly worked out the surprisingly high dose necessary to keep it in the normal range.

Good to know. Was through supplements? Suggestions welcome. I believe low vitamin D is issue with absorbing calcium.

I just take oral vitamin D - 5,000 IU per day. I would *not* go that high without enough testing to ensure that the blood level is reasonable and stable.

I've been taking tablets of vit. D (10,000 IU) combined with vit. K2 (200 µg) for the last years, 3 per week. I also had to increase the dosage over the years, beginning with 500 to 1,000 IU per day, which was not enough. My 25-OH vit. D level has stabilized at >30 µg/l.

I'm also diagnosed with osteopenia, but the bone density has increased a little over the past 9 years. I took a calcium supplement for some time, but during the last years only some additional magnesium.

I have Osteoporosis.

I had very low D also before my colon was removed. After a month of extra high dose D2 prescribed by an endocrinologist it was back to normal. I had been on 2000 IU (can't ever remember to take daily).  When I heard Dr. Fauci famously say he took 6000 IU daily,  I upped my dose. I take it about every other day plus whatever is in my multivitamin.  I also take liquid Calcium supplement and  eat lots of dairy and other calcium-rich foods.  

Osteopenia is a huge range of findings, and treatment varies depending upon circumstances. I've slipped into osteoporosis from osteopenia over the past few years. Hesitated to add the injected or infused  meds the endocrinologist recommended just before I was to have the colectomy, J-Pouch procedures.  

If anyone on this thread with a J-Pouch has started Denosumab (Prolia) or has any experience with the other class of drugs given for osteoporosis, please comment on your experience with it.

I am also 58 and had osteopenia found many years ago on a bone density scan. I was told it was from years taking prednisone- not malabsorption issues. Also had low Vitamin D which was quickly resolved by taking 5000 IU a day. The best source of Vitamin D is sunlight and if you get 30 minutes a day that should provide a therapeutic daily dose as well. I don't live in a super sunny climate.

I also have osteoporosis. I’m currently on Evenity by injection once a month. I’m on a one year course and am six months into it.
I have been having issues of late with my j-pouch, some Incontinence at night. I don’t relate that to the osteoporosis meds though.
I haven’t really had any side effects that are noticeable.
My understanding is that after a year I will switch to prolia for maintenance.

Hello HK2000,

I am a 69 year old woman with an ileostomy; previously had a j-pouch.  In 2020 my primary care physician highly recommended that I see an endocrinologist because of osteopenia, and I'm glad he did.  I was already taking Vitamin D (50,000 units) once a week for several years and my Vitamin D level has stabilized.  I was not taking Calcium and the endocrinologist suggested 1,000 mg a day, so I take a 500 mg chewable twice a day (morning and evening).  My endo also placed me on Alendronate Sodium Tablets (Fosamax), 70 mg, once a week, and this medication regimen has improved my bone density so much.  My last bone scan showed much improvement.

One more thing, I was very, very nervous about going on a bone medication because I was worried it would upset my stomach.  I cried in his office.  I'm happy to report that the once a week Alendronate had not caused me stomach upset at all.  I take it every Tuesday with a tall glass of water, sit up for 2 hours, and then have breakfast and take my other meds.

Good luck to you.  Find a good endocrinologist that you like and trust.

Caty   

chiming in w the 'wisdom' of 75 yo woman w osteoporosis and cd.  have a k pouch after years of problems w the j.  had woefully too much prednisone when first treated for cd, which is most likely the culprit.  in about one year went from + side of the bell curve to the - side.  I've reversed it slightly by: weight bearing exercises; 2 m walking daily; stairs; green veggies and yoga, yes yoga helps bone density.  contracting muscles pulls on tendons that in turns pulls on bones and that's what helps bone density.  for some reason biking doesn't help, but do it anyway.  staying active helps not only bones, but also memory and well being--get much of my medical info from ny times, family members who are docs and reading a few medical journals.  enough!!

don't forget most women have bone density problems after menopause.  I opted for exercise over the meds and all docs involved have agreed.  but everybody is different and I am only sharing my experience.

went through vit d problem and with mega doses it was fixed.  I agree with CT that getting sun is the best means.  it's summer, seize all its glory.  jan

Thanks to all who commented. I have been soaking up sun when it is shining and supplementing with vitamin D, trying to keep up Calcium with diet alone - not the best, but supplements, even liquid, don't sit well with my pouch. My situation was complicated by a bad leg injury a year prior to the colectomy. I jumped down an embankment and crushed the tibial plateau.  I'm convinced that the root cause of the injury was low blood count from a guy bleed the week prior,  leading to tiredness and poor judgment in the moment. Anyway- non weight bearing for 8 weeks and then a slow two year recovery, punctuated by the bowel surgery.  I don't miss the colon!  But my steps are still limited.

After the next bone density later this year I may be more open to starting meds based on the experiences shared here.