Would like your opinion very much.

[jodibelle352]

Hi All:

This has been a very stressful week. So many decissions to make and not smart enough to know all the pro's and con's. I am hoping that between my Family Physician and myself we've come up with a course of treatment that sounds more plausable. I hate it when you have 3 or 4 more specialist all doing different things to correct certain symptoms but some of the more aggressive forms of treatment are making me truly ill which scares the bejeeeezes out of me.

FYI this is what has recently come to surface about my condition/conditions.

I at this time know longer have osteopenia (please excuse my spelling) as of 3 weeks ago my bone density test shows that I now have "full blown" osteoperosis! In the past 2 years I have had a 22% decrease in bone density in my lower back and a 15% decrease in bone density in my hips. This tells me that my severe lower back pain and the pain in my hips when I sit or drive long distances is because of the osteoperosis. Not neccessarily from the fibromyalgia.

My doctor for my lupus,osteoperosis and fibromyalgia put me on Boniva on October 7th for my first dosage of the medication. I have to tell you that the side effects from only one dosage of Boniva kicked my ass for 4-5 days after taking it. I could not function at all for the whole entire time. When I called and revealed to them the side effects I was having they naturally told me to STOP taking anymore Boniva. However, within a week I was called it was suggested that I either do one of 2 things (and I can't remember the drugs names...sorry) #1. I would go in monthly to receive an IV drug in the hospital to slow down the bone density deterioration. #2. I would give myself a daily injection for the next 2 years. Since we have have a "doughnut hole" in our prescription drug coverage #2 is NOT an option because the injections are very pricely and once we hit that "doughnut hole" there is NO WAY we are going to beable to handle the daily cost of the injections. Dr. Diola's sullution is to start treating my bone density deterioration "aggresively" a.s.a.p.

Two weeks ago when I had my appointment with my GI specialist; Dr. Larkin. Her approach and main concerns with me is #1 My weight loss which my weight is still 94lbs and my lack of calcium in my levels. She feels that even though I did have kidney stones back in 2001 that I need to bring those calcium levels back up before taking any aggressive treatments that could cause me to relapse in the progress that has been made with my CC.
My last appointment as I said my weight went from 97lbs in 3 months down to 94lbs. My calcium and vitamin D levels are signigicantly very low. I can't remember the exact number on the calcium but my Vitamin D level is supose to be between 20/30 it is at 10.
Even though I did have the episode of the D on October 3rd my stool is now solid! So Dr. Larkin is cutting my Entocort down to 6mgs daily from the 9mgs daily. I am now going on my 3rd week at the lower dosage without any complications. She still advised me to protect myself whenever I'm going out somplace by wearing the "Depends" and taking an "anti-D" medication before leaving home.

On tuesday I went to see my Family Physician; Dr. McDougall and this is the course of action we have decided on. Doc was truly concerned about my "bone density" results as well as my lack of calcium and vitamin D. His thoughts were that before using any aggressive drugs for my oseoperosis at this time that he wanted me to start taking 1000 IU's of Calcium daily and 1000 IU's of Vitamin D daily followed by labs every 3 months to check my levels. He said he would like to try this for a year and if there is still a severe decrease in my bone density in a year then consider an aggressive form of treatment as Dr. Diola wants to do.

I just read grannyh's post on osteoperosis medications and the possibility of irregular heart rates etc. and remembering the feeling of light headedness and the feeling of an elephant sitting on my chest after taking the Boniva that maybe my PP's course of action may not be the safest for me seeing that there is a history of heart desease on both sides of my family.

I have already started taking the calcium and vitamin D supplements already. (I started them last Wed. a.m.) I have not had any Big D as I said before since Oct. 3rd and I'm feeling good with the progress on the lower dosage of Entocort.

If anyone has an thoughts, idea's or suggestions please let me know how you feel about how things are going for me.

Love and God Bless:
Jodi

[tex]

Hi Jodi,

I agree, you do have a serious osteoporosis problem, that definitely needs to be addressed. The fact of the matter is, though, the cause of your osteoporosis problem is your malabsorption problem, and until you have that under control, nothing you or your doctors can do, will help your bone mineral density. The rapid rate of your bone mineral loss is evidence of the severity of your malabsorption problem, and your continued weight loss is further proof.

To begin with, if you have inadequate stomach acid, you will not be able to properly digest and absorb calcium. Are you taking any antacids? If so, that might be part of the problem. In order to properly absorb calcium, (whether it is in your food, or in the form of supplements), you have to have not only enough stomach acid, but adequate levels of most of the vitamins, and you must definitely have enough magnesium, (magnesium increases calcium absorption from the blood into the bone). In fact, too much calcium blocks the absorption of magnesium, which can lead to a deficiency characterized by hair loss, muscle cramps, irritability, trembling, disorientation, etc. You also need balanced amounts of the other essential minerals, but the most important requirement of all, is a properly functioning GI tract, otherwise there is no way that you will be able to get the calcium into your bones, where it will provide some benefit.

The sad truth is, if you have deficiencies anywhere along the line, it won’t matter how much calcium you eat, your body will take it, (and whatever other minerals it needs), from your bones. That's why you need to concentrate on controlling your MC, because nothing is going to help your osteoporosis, until you can resolve your malabsorption problem. I'm sure that none of your doctors understand that fact, (obviously, from what they are recommending), but I am convinced that what I'm saying here is true.

Your family doctor is on the right track, (with the vitamin D recommendation, at least), but he obviously hasn't kept up with the latest research on vitamin D. If you are that deficient in vitamin D, a thousand units per day won't do you enough good to talk about. At that rate, you will never get back up to a reasonable level. You should be taking at least 4,000 IU per day, every day, and for the first couple of weeks, you probably should be taking more like 6,000 IU, to try to get your level back up into the "normal" range.

Have you ever been tested for celiac disease? I don't mean just an anti-gliadin blood test, but a tissue transglutaminase antibody IgA test, and/or a small intestinal biopsy. I don't believe that it's possible for someone to lose bone density as fast as you have been losing it, unless they have celiac disease. If that turns out to be the case, then the only way that you will ever be able to turn your osteoporosis problem around, is to eliminate all gluten from your diet. Nothing can cause the loss of bone mineral density faster than untreated gluten sensitivity.

Furthermore, if you are gluten sensitive, then eliminating all gluten from your diet, will eventually eliminate all of your lupus and fibromyalgia symptoms.

If you are not gluten sensitive, and the Entocort is controlling your symptoms, then it's possible that your gut will heal sufficiently that your malabsorption problem will slowly fade away. It won't happen overnight, though - it will probably take several months, at least. Tests at enterolab showed that three years after adopting the GF diet, I still had some residual gut damage, (though, of course, not enough at that point to cause a serious malabsorption problem).

I'm not a doctor, and I don't have your medical records in front of me, but based on what you have told us, that's my two cents worth, to the best of my understanding of the situation.

Love,
Tex

[jodibelle352]

Thank You Tex:

I really appreciate all the information you've given me.

No I don't think I was ever tested for celiac disease. I did have the scope down my throat done and a colonoscopy done by my GI several months ago. The only thing the first scope in regards to my stomach or intestines showed that I also had ulcers in my stomach and the colonoscopy through the biopsy gave my diagnosis for Colagonous Colitis.

It's only my opinion but I know that all 3 of my doctor's truly care but I'm beginning to feel that none of them have ever treated anyone with my condition before and that sometimes they may have my wellbeing and best interest in mind they are NOT truly certain what they prescribe will actually work.

To your answer about taking antacids, the answer to that is No to Rolaids or anything of that nature. I do take Acephex daily for my stomach issues but Tums, Rolaids or anything of that order I have not been taking anything.

When you talk about malubsorption and not enough stomach acid is that because of the removal of my gallbladder back in January? Could this compound by CC issues and is there anything I could take if I'm not producing enough stomach acid?

I know I'm being a pain in the ass, but I'm truly getting so tired of test one right after another showing absolutely nothing and that this or that is fine when I'm still looking and feeling like the #1 poster child for anorexia!

Love and God Bless:
Jodi

[tex]

Jodi,

The biggest problem with meds is that when you use them to treat one symptom, they sometimes causes another, different problem. Aciphex is specifically designed to reduce the amount of acid produced in your stomach. That means that it will restrict your ability to digest calcium sources, and therefore limit your ability to absorb calcium. The removal of your gallbladder probably has some effect, since it tends to cause a fat malabsorption problem, and most vitamins are fat soluble. Most of the malabsorption is probably caused by the inflammation in your intestines, though, due to either MC, or gluten sensitivity.

If your BMs are normal now, then you may be getting your inflammation under control. Vitamin D also helps to fight inflammation, and research shows that it might be useful to help control inflammatory bowel disease, so IMO, you need to take a lot more vitamin D, starting ASAP, because it will help a lot of your problems. Without enough vitamin D, your immune system is unable to perform, (of course, the Entocort, will suppress your immune system anyway, but without enough vitamin D, your immune systems receives a double whammy).

You can take Betaine HCL to increase the amount of acid in your stomach, but that would counteract the effect of the Aciphex. The Aciphex is causing the reduction of acid in your stomach, so if you want to increase your supply of stomach acid, all you have to do is stop taking the Aciphex. If you have a serious GERD problem, though, and you stop taking the Aciphex, then the GERD symptoms may return. Did your doctor test your stomach acid before prescribing the Aciphex? The reason I ask is because not enough acid can also cause GERD. Most doctors seem to just write a prescription without bothering to test to see if there actually is too much stomach acid present. Can you tell if the Aciphex actually prevents you from having reflux, or does it just reduce the burning? The point is, if you don't actually need it, then it can cause more harm than good. It can trigger MC, for example.

Love,
Tex

[Dee]

I'll find out tomorrow if I am supplementing enough with my vitamin D.
If not, I'm sure my PCP will want me to up the dose.
She told me that she has another female patient who she has advised to take 5,000 IU's twice a day.
Also, my blood pressure has never been high and it was at my Friday's doctor appt.
They checked it twice.
I have a funny feeling that the Effexor XR is causing it. SIGH!!!!!!!
Take a med for one thing and it causes something else!!

Love
Dee~~~~

[Gloria]

I read somewhere that the body can only absorb a limited amount of calcium at one time. I don't remember what the limit was at the moment. For that reason, I take my supplements at a time when I'm not ingesting any other type of calcium.

As far as the vitamin D - the easiest and cheapest way to get it is to spend time outside in the sun. But what to do in the winter? Will sitting in a sunny window give the same benefit as being outside?

Gloria

[tex]

Will sitting in a sunny window give the same benefit as being outside?

Apparently not. If you scroll down to page 111 of this reference, you can see a mention of the effects of glass on UV transmission:

http://books.google.com/books?id=dXOPBM ... #PPA109,M1

Tex

[katinchatt]

For IBD Patients, Vitamin D Deficiency Associated with Lower Quality of Life and Higher Disease Activity
Researchers at the Medical College of Wisconsin investigated whether Vitamin D deficiency in patients with IBD is associated with a lower quality of life or higher disease activity independent of other known risk factors and medication use.
Disease activity and quality of life were assessed using validated questionnaires, which were administered at every clinic visit. The researchers also looked at the prevalence and seasonality of Vitamin D deficiency in this inflammatory bowel disease population, as well as its association with IBD-related hospitalizations, surgeries and medication use.
This retrospective cohort study conducted by Dr. Alex Ulitsky and his colleagues analyzed vitamin D levels of 504 inflammatory bowel disease patients. They recorded the patients' lowest Vitamin D measurements and date when each low measurement was taken.
Dr. Ulitsky and his team found almost 50 percent of the patients were Vitamin D deficient at some point, with 11 percent being severely deficient. Vitamin D deficiency was not significantly associated with being hospitalized for IBD or having IBD-related surgeries. However, in both Crohn's disease (CD) and ulcerative colitis (UC) patients, vitamin D deficiency was independently associated with having increased disease activity scores compared to those with normal levels of Vitamin D. Vitamin D deficient CD patients, but not UC patients, had worse quality of life when compared to patients who were not Vitamin D deficient.
According to Dr. Ulitsky, "All IBD patients, irrespective of their disease, disease location or nature should have their Vitamin D levels checked regularly and corrected aggressively when insufficiency is found."

http://www.eurekalert.org/pub_releases/ ... 100508.php

* * * * *
Sunlight is D-licious
It is the deficiency of Vitamin D that is thought to be the primary cause of most cancers and many chronic diseases, such as multiple sclerosis, diabetes and other metabolic issues, osteoporosis, to name a few. In other words, if you don't get enough sunlight on your skin on a regular basis, you are extremely likely to suffer from Vitamin D deficiencies that will inevitably result in chronic disease and/ or cancer. New research is showing a possible correlation between Vitamin D levels and susceptibility to Influenza viruses. Do you ever wonder why there is a "flu season"? In northern latitudes, it is uncanny that the flu season peaks at a time when our vitamin D stores are diminishing (interesting how most people reach for Vitamin C pills during this time and not vitamin D….one more reason to book a tropical vacation in the middle of winter).
During the summer months our bodies can produce about 10,000 to 20,000 IU's within 15 minutes of sun exposure.
The current RDI (recommended daily intake) for vitamin D is between 200 and 600 IU, depending on age. Current research has shown that the RDI for Vitamin D is far below what we need. Vitamin D deficiency in our population is widespread, especially affecting people who are elderly, overweight, lactating, dark skinned, who have digestive issues (including gluten sensitivity and gallbladder problems), someone who has had a gastric bypass surgery, and for people who wear a sunscreen daily.
http://www.wellness.com/blogs/Nourished ... fer-msn-cn

Kat

[JLH]

THANKS.

[Dee]

Jodi,
I've been thinking of you!!
How are you doing?????

Love
Dee~~