The worst yet!

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Lesley
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The worst yet!

Post by Lesley »

Need help. Polly? Tex?
OK, I have to find a new strategy. I have another UTI, and was getting VERY constipated, so 2 days ago I took part of a Dr S. This afternoon I had an attack of pain and cramps, the likes of which I have never had before. I was in agony, and felt as though I was about to pass out at each point. I was literally POURING with sweat, drenched and writhing. My poor cleaning lady, who has been with me for years, has never seen me other than in full swing, and is always yelling at me that I never sit down, so no wonder my back hurts.
It lasted a full hour or more. Felt like way more. Finally ended with muddy D.

I feel like my abdomen has been run over by a truck, and I feel weak and knocked out.
I HAVE to have a strategy to prevent the C getting bad. I MUST not go beyond 3 days so I have to figure out something new to do. Dr. S. causes cramps. I have tried taking citrucel and mineral oil daily, with no results. I am taking mag and vit C as per Gabes. I had a couple of spontaneous BMs and was thrilled, but then this happened.

Also, I have these almost hemorrhages, not bruises, that appear under my skin. Sometimes the skin tears. These started a long, long time ago, but have been getting worse and worse over time. I asked the dermatologist last month. His answer, old age, did NOT satisfy me at all, so I asked my PCP for blood tests, done, fasting, today. Liver and kidney function is fine. Sugar is fine. Sodium is a bit low, not too terrible, 133.
Now we wait and see what is next.

I have had bad cramp attacks because of C before, followed by muddy D. many times, but this was something else. And as for the D. I don't think I am emptied out. I have to make sure that I have a BM in 3 days somehow.
Any ideas?
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tex
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Post by tex »

Hi Lesley,

I'm sorry to hear about such severe symptoms. You're symptoms are so persistent and severe that I'm wondering about the possibility of a stenosis in your colon. Do you have a copy of your last colonoscopy report (the one from the GI doc, not the pathology report)? If you do, does it include any indications of a possible constriction anywhere, or was the word "tortuous" used?

It's not easy to make suggestions without lab data, but there's a good chance that the thin skin/easy bruising problem may be associated with a vitamin C deficiency, or a need for more vitamin D. Doctors will virtually always blame such symptoms on aging, but that's because they don't realize that as we age, we need more vitamin D.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Lesley
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Post by Lesley »

Hey Tex,
No, my last colonoscopy didn't mention anything of that sort. If you remember I sent the results to you to go through for me since my doc is useless. You didn't find anything like that. It's only 4 years since my last colonoscopy. If it was closer to 5 I would push for another one, though it's not my idea of a good time! Pre this attack the GERD was also horrible. I am hoping that it will be a little better now. The bloating is down, at least and the scale shows 4 lbs off. I so want to prevent more attacks. This one was so bad. I remember your descriptions of what you went through. 4 years into this and I am still having them. I had a period where I didn't have any, and I was hoping the mag and vit C (1000 mgs daily) were helping some. I am also taking 15000 ius of Vit D daily. I don't think my doc asked for vitamins, though I did prompt her to.
Oh, BTW - I have a new UTI. My insides are such a mess!
She is going to nag me about my cholesterol again.
CHOLESTEROL <=199 mg/dL 233
TRIGLYCERIDE <149>=40 mg/dL 43
LDL CALCULATED <=99 mg/dL 170
CHOLESTEROL/HIGH DENSITY LIPOPROTEIN <=4.2 5.4
CHOLESTEROL, NON-HDL 190

She knows I will NOT take statins or anything else. And I am not worried about it. I am more worried about getting my gut under some sort of control. I don't know what else to take with my terrible motility.

I made oat granola and soaked some prunes and will try that. I also want to start juicing a bit again to see if I feel better. There was a period when I did feel better with 1/2 a glass of juice a day.

I have to find something that helps a bit.
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Post by Grahm »

Lesley,

I'm sorry you are so sick. Feel better soon :smile:

Love,
Connie
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tex
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Post by tex »

Lesley,

Yes I remember. I thought that maybe you might have had a more recent exam. The odds are pretty high that nothing of that sort (a stenosis) would have changed in just a few years though, anyway.

That's a pretty high vitamin D dose, depending on your current blood level, and how long you have been taking that much. If your blood level happens to already be near the top of the "normal" range, that might possibly be a high-enough dose to cause GI issues. But again, you've been having the GI issues for years, so the vitamin D didn't cause them. If your blood level is high enough though, it might possibly be making the symptoms worse. I don't think that's the problem, but I thought that I should mention it.

The GERD symptoms of course are part of the problem with lack of motility. When everything backs up because it can't go forward, the result is reflux.

I still think that the basic problem is just exactly what Polly decided — seriously compromised motility, because of childhood polio damage to your enteric nervous system. Somehow, we've got to find a way for you to see a qualified doctor who understands that association. I don't see how anyone else in the medical profession is going to be much help.

I'm just thinking out loud here, but it appears to me that you desperately need the equivalent of a heart pacemaker to regulate your digestive system motility. I wonder if anything such as that exists, or what it would take to create one. Surely you are not the only one in this country who has this problem.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Lesley »

I was taking 10,000 and my blood tests only showed 32, so I increased it. I can drop it back and see what happens.

I am sure Polly is right. She did do a search for that doctor, but didn't find him. I will go on that site and see if I can contact someone who can help me. I cannot go through he same thing as yesterday. It was way too intense. I didn't have that much pain with any of my 3 kids, and I had complications with all of them.

Thanks Grahm.
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Post by tex »

Lesley,

If your vitamin D test level was that low while taking 10,000 IU, then taking 15,000 IU shouldn't cause any problems. It might be a good idea to have the level checked again after 3 or 4 months, just to see how much the level has changed by then. Apparently your system is using up a lot of vitamin D just to maintain the status quo.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Lesley »

That's what I thought when I increased it. I wish she had repeated it with this set of tests, but she didn't.

She says my LDL - 170 - has really gone up. Could it be the egg yolks I put in my ice cream? the only diet thing I changed. Should I worry about it?
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Post by tex »

Good questions. Research shows that eating high-cholesterol foods normally does not raise cholesterol levels in the body. It's difficult to say what the cause might be, because there's little realistic research being done to pinpoint such things these days, everybody just assumes that the old incorrect assumptions made 40 or 50 years ago were correct. It's surely due to something in your diet, and theoretically it shouldn't be the egg yolks, but here's why I suspect it might be:

Thinking about this, it appears to me that it's probably a result of your slow motility. Somewhere, years ago, I saw some information that claimed that constipation is associated with increased cholesterol levels. I can find comments about this in non-research websites, but so far I haven't located any peer-reviewed research data that specifically addresses this issue:
4) In a colon with a slowed transit time, bacterial imbalance, and low roughage; bile acids upon reaching the colon can be converted into carcinogenic substances. Staying in contact with the colon walls for long periods of time, these substances can possibly be a cause of colon cancer. This bile acid breakdown product (lithocholate) also signals the liver to decrease bile acid production. Since cholesterol is used to synthesize bile acids, a decreased synthesis will raise cholesterol levels and also increase susceptibility to gallstones.
http://www.myvits.com/large-intestine/vitamins.aspx

Here's an actual research report that suggests that yes, the egg yolks might be a problem, due on increased cholesterol absorption when motility is compromised in the small intestine, but it doesn't address this problem directly, since the research was actually focused on gallstones:
• Our findings imply that small intestinal hypomotility will amplify the cholelithogenic state because of hyperabsorption of cholesterol and ‘secondary' bile salt synthesis by the gut's anaerobic microbiota.
http://jp.physoc.org/content/590/8/1811.full

So despite the fact that your doctor doesn't understand how cholesterol in the diet affects blood levels of cholesterol, she might be right simply because your issues make you a very special case, and normal rules don't always apply to special cases.

Another reason why I suspect that there is something to this cholesterol/slow motility dilemma is the fact that when my colon and part of my terminal ileum (where most bile acids are absorbed for recycling) were surgically removed, my cholesterol level dropped drastically, and I have never been able to coax it back up to even close to where it previously was. With an ileostomy, my transit time is about a fourth to a third of what it was previously.

On the plus side, as we get older, longevity is directly associated with total cholesterol level — research shows that the higher our cholesterol level, the longer we are likely to live (contrary to what most doctors think).

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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YES!

Post by JLH »

DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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tex
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Post by tex »

Thanks Joan,

After 10 years, they should be perfected by now.

Here we go — a recent article from GB:

Pacemaker for constipation changes mum's life

And:

Sacral Nerve Stimulation

Lesley, I have one more, a very recent article from July, about a new idea for a device that is being trialed, that I will PM to you because it's a copyrighted article in a GI publication, so I can't post it for public display.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Lesley »

Great you guys. I will ask my GI about this tomorrow. Anything that will help the motility will be so welcome. Tonight I still have GERD and nausea. Nexium is falling down on the job right now. It might be a 2 nexium night so I can sleep.
I hate this illness.
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Post by Pat »

Lesley,

So sorry you are having so many problems. How much magnesium are you taking? Maybe try taking it 3 times a day. Keep increasing the dose and eventually you should have D. Then back off until more normal. Maybe you have tried that I don't know.

Dairy gives me reflux but I know we are all different.

Drink lots of water and urinate at least every 2 hours. Sit there for a little while afterwards in case you have not completely eliminated your bladder. Maybe a little more will come out and not stay in there, but keep your bladder flushed with lots of water.

Pat
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