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Crohn's Disease Forum » Support Forum » Vent Away » So Sick, scared, worried, so much going on :(


05-27-2013, 06:44 PM   #1
Ihurt
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So Sick, scared, worried, so much going on :(

As some of you already know, I had my colonoscopy back in April about a month ago. It did not show anything. However I am still having awful intestinal pain and issues. I also have had a vaginal infection( BV) since having that stupid colonoscopy! I cannot get rid of it. My IC Bladder has also been not well ever since. I am always in pain. My anxiety levels are through the roof partly because now I am worried sick about my husband. Last year we found out just by chance that he has osteopenia. Our regular doctor has a bone density scanner in her office so she offers everyone to have it done. We don't have to pay anything extra besides our co-pay so it works out ok. Well we were NOT expecting my husband to come back showing he had osteopenia( he is only 33 years old!). Well this year he went to have his yearly scan and now he has full blown osteoporosis in his hip!! This was even while taking 1000mgs of calcium and 5000 IU of Vitamin D3 the whole year after finding out he had the osteopenia. Well I started doing some digging and found that my husbands grandfather died of some kidney disease. This is my Mother in laws father. Well my MIL is saying she thinks it may be some hereditary disease but is not sure. Anyhow, I had my husband undergo a kidney ultrasound. Well they found that he has multiple subtle( tiny) stones in both of his kidneys. I made an apt with a nephrologist( a kidney specialist). We explained to her about the whole issue with the possibility that there was a hereditary disease in the family.

Here is the thing, my MIL is not sure what the name of the disease was, she said there was no name. Just that her dad when he was 59 years old he got real sick in September and died 4 months later. They did an autopsy she said and she said she remembers hearing that her fathers kidneys were the size of a 5 year olds. ( that indicated chronic kindey disease for sure). He also was bleeding severely in Gut too. I believe this has to do with him being in renal failure.

Well we talked to the nephrologist and she is very concerned about the tiny stones that are in my husbands kidneys. We asked her about the whole hereditary kidney disease and she is not sure yet. When we told her that he was taking 5000IU of Vitamin D 3 daily with 1000mg of calcium she said that could also be the cause of the stones. She is doing a 24 hour urine catch where he has to collect his urine over 24 hour period. She is checking to see if he has too much calcium, citrate and something else. She did however say there is a Rare hereditary disease that can cause a person to develop lots of kidney stones. I asked her what they do for this disease and she said he would have to be put on a transplant list!!!!! There is nothing to do for this disease. I guess the body just develops lots of stones that eventually leads to renal failure! OMG, so now we have to wait 2 and half more weeks to get this 24 hour urine test done and see about that. So basically we have no clue what is happening. She said it may or may not be this disease, she just does not know. I mean we have tried to talk to his mom about her dad but she does not know much. We do know that her father had 2 brothers and each one also had a kid who had kidney issues. In fact they both ended up with kidney transplants at some point! They have since passed away. They started having the issues when they were in mid life( one was in her 30's when she started having issues and the guy was 60 when he got real bad. We talked to the spouses of these two cousins that had the kidney issues. Well according to one, she said she is certain her husbands issue was because he had uncontrolled high blood pressure for years and she says this what she thinks caused her husbands kidney disease. So if that is the case, then that would not be hereditary. The other one, well he said his wife started having kidney issues right after she gave birth to their first child. Well then two years later she gave birth to the second child and her kidneys really went bad. She ended up on dialysis and eventually needed a kidney transplant. She also got diabetes after the transplant and ended up with many health issues.( she had a colostomy and also a urine bag as well). Not sure what all happened there. So we really have no clue if these two people had an actual hereditary kidney disease or not. We don't even know about the grandfather. I mean when the grandfather died, it was back in 1963. They did not know much of anything back then I am sure, I mean medicine was really primitive.

So that is where I am. I am praying that my husbands issues is just that the high Vitamin D he was on plus the calcium could be the cause of the stones and maybe even the osteoporosis. The kidney doctor said it may be. She said there have been studies saying that they are finding that taking Vit D and calcium does not help with bone loss, she said they find that getting the Vitamins from food seem to have a better effect and not so many side effects. I just don't know. I mean ever since she mentioned that disease I am freaked out. I am worried sick! I don't know what to think. Between that and my intestinal pain and bladder pain and all this other crap with the vaginal infection that wont go away, not to mention my extreme exhaustion, I am falling apart. I have been on augmentin for 21 days to help get my bladder out of this infection/flare. I usually am on it low dose as it is, but since the colonoscopy I got a UTI and had to go on it higher dose. that is not making my gut happy at all!

Sorry this post was so horribly long. I am at my wits end and cannot deal with all this Thanks for listening..
05-28-2013, 07:24 AM   #2
Beach
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Join Date: May 2011
Sorry about the troubles your husband is having with osteoporosis and the development of kidney stores. I remember a few weeks ago you mentioning this, wanting to look further into the issue. Hopfully an answer can be found.

I recall in the news last week there was an article published in the Clinical Journal of American Society of Nephrology about several risk factors for developing kidney stones. It is an observational study, but thought it might be of assistance when looking at causes. It shows a link between fructose, non dairy calcium, vitamin C, along with other factors to be concerned with.

"Sugary drinks tied to kidney stone risk"

http://www.foxnews.com/health/2013/0...ey-stone-risk/

Best of luck.
05-28-2013, 07:33 AM   #3
lizbeth
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I'm not surprised you're at your wits end!!! That's a heck of a lot of issues to be dealing with, I'm so sorry it's happening. I pray that something changes for the better, good luck and take care, big hugs for you both.
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Lizbeth
05-28-2013, 08:26 AM   #4
Ihurt
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Thank you everyone for the support!

Beach: Thanks for that link. Yeah, I read about this study too. My hubby does not really drink too much soda or anything though. I mean he would drink one like once a week or so. I just don't know. I am just hoping it was all the supplements he was taking. I mean was on a higer dose of Vitamin D
(5000 IU's daily) and he was taking the 1000mgs of calcium. He also did take 500mgs of Vitamin C too. But I would think Vitamin C would help a person Not to get stones seeing as it is acidic in nature. I just don't know. I just don't want it to be anything serious. Thanks for the info though.

Lizbeth: Thanks for the support. Yea, this is just too much. I am certain all the stress has caused my intestinal issues to flare up as well as everything else. I am not in a good place right now.
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