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Old 04-30-2008, 07:55 AM
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mrsD mrsD is offline
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Join Date: Aug 2006
Location: Great Lakes
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mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb That is a horrific story...

of how your bowel problem got away from you. And now you have no large colon? Living with this cannot be easy, or comfortable.

I was born with a congenital GI defect... malrotation grade II. I have had 2 surgical consults, and both decided on conservative management. At that time
70'-80's the only successful surgeon was in Toronto. I have had one life threatening obstruction, which unblocked itself with heavy meds. But I am prone to smaller ones, which are very painful and can make me pretty ill for a week. As a result of the twisting of my organs, I have a "fast transit" situation in the bowel which is not as extreme as colitis, but does limit food and nutrient absorption times, there. So nutrient supplements have been a huge positive intervention for me, and led me to research this issue over a decade ago.

There are some things I think happening with you to bring on the PN.

1) The drug treatments you underwent BEFORE your surgery, can be very debilitating. Flagyl which you might have been given, actually causes PN. So does Vancomycin.
So do the fluroquinolones like Cipro (which you might have used). The sulfonamide group depletes folic acid. The steroids affect a long list of nutrients, including potassium, zinc, selenium, calcium, Vit D and more.

2)Once the bowel is destroyed and finally removed, all the benefits it performed for you are gone. There are bacteria there that make B12 and biotin, and Vit K. Oxalobacter fomigenes traps oxalate from food, and prevents it from being absorbed. When it is gone which also antibiotics affect, then
one becomes prone to calcium oxalate kidney stones. There is no probiotic available today commercially to restore this organism.(it is still in the research stage).

3) sodium and potassium levels are controlled in part by the colon.

4) soluble fiber is digested by bacteria and the fatty acids absorbed into the blood stream. This is how soluble fiber lowers cholesterol and the fatty acids are used to repair and build tissue.

So I do think your PN may be mostly nutritional. Doctors in the US typically tell people their B12 is normal at levels like 200 -250...which is NOT normal by any means. Japan leads the world in aggressive B12 treatment because of a huge drug fiasco ( a drug that depleted B12 ) there that affected thousands of people (blindness/total disability).
So their cut off for normal is 500-550.

So if you are comfortable telling us what drugs you use now, and what vitamins you take now, what you can and cannot eat, it would help gauge where you really are. Another area where the medical profession fails patients is with bariatric surgery. We have had some people here who have had huge issues with PN after it.
One woman who does not post here (she did at our other location in the past)
ended up with both autonomic and peripheral issues and was very ill. I've often wondered what happened to her. Typically the PN for bariatric patients starts around 3-5 yrs post surgery.

Also with that colitis, I have to ask if you had autoimmune testing.
Autoimmune issues often translate into PN... and in that case there is treatment, however very expensive, using IVIG. Glenntaj has the tests memorized for having this looked at. I would get that done ASAP so you don't deteriorate further needlessly. Besides the IVIG there are no drugs at this time to stop or heal PN. All of them are symptomatic relief only.

And drugs also deplete nutrients. Slowly the medical profession is learning this, but very slowly, so patients do not find relief from drug side effects which can be managed if understood.
example:
http://www.suzycohen.com/drugmuggers/

A very good book is out there but out of print (but I have it) called
Drug Induced Nutrient Depletions by Ross Pelton and James LaValle Rphs

Also this book:
http://www.enotalone.com/article/4624.html
This one is less technical...more the average person and a little newer than
the Pelton book.

So if you want me to look up your current treatments, I can do that for you.
It is almost the most important duty I consider myself to be here for.

Concerning probiotics -- there was a new study just recently in severely ill patients given probiotics via tube, who were found to die at higher rates than the non probiotic patients. These had pancreatitis, but there is concern that
probiotics may be harmful under some extreme medical conditions, and should be withheld.
This is the link to that paper...
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
It is not known at this time how this information translates to other types of GI infection.

Many people with chronic longstanding disease and pain, are being screened now for Vit D deficiency. And many are being found to be very low (VERY) in this nutrient. So getting the new test, is a good idea.

Patients with long protracted medical interventions tend to rely on what the doctors say, without looking further. If one of these doctors says your B12 is "normal" the patient does not look further. You have no idea how many people have come here with this statement. And it is the most common overlooked
misinterpreted test result we see here.
Many people here keep a log of their own test results, for this reason.
The link to how to do this is in the stickies.

So yes, there is homework here, sorry to say, and it is complex sometimes!
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

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Weezie looking at petunias 8.25.2017


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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 04-30-2008 at 11:36 AM.
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