phosphatidylcholine? (long, technical post)

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TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/19/2008 9:56 AM (GMT -6)   
Hi,
Do any of you remember a post about research on phosphatidylcholine? Someone posted research about it: Stremmel W. Merle U. Zahn A. Autschbach F. Hinz U. Ehehalt R. Retarded release phosphatidylcholine benefits patients with chronic active ulcerative colitis. Gut. 54(7):966-71, 2005 Jul. 
 
I can't find that posting now, but just did a "medline" search and found more research (8) articles indicating that phosphatidylcholine can help reduce inflamation related to IBD.
 
I'm not a doctor, so I can't understand all of it, but from what I read from the abstracts of these articles, the amounts and types of phosphatidylcholine differ among the studies, but the general consensus is that taking phosphatidylcholine helped at least 50% of the participants, whereas only 10% of the placebo group had a reduction in symptoms. If anyone wants the citations/abstract, please let me know. I have them in a word document and can e-mail them to you. Most of it should be pretty understandable and you can even print it out for your docs, if you want! 
 
Anyway, I began taking 4 (420 mg) capsules of phosphatidylcholine last Friday. It cost $15.99 from the "Vitamin Shoppe" for 100 capsules. (I was having a VERY BAD flare with blood, mucus, D and cramps since at least 4/25.)  The cramps and D are gone. I'm having regular solid bowel movements, the bood is trace and I still have some mucus, but am optimistic that'll go away, too. Yesterday, I ate spicy "Popeyes" mashed potatoes & fried chicken, buffalo wings, pizza! I had a little gas, but not much of anything else (just the mucus and trace amounts of blood).
 
I never began the Rowasa or Canasa my GI rx'd, but switched to the Colazal (from Lialda) on 5/9. I attribute my "remission" to the phosphatidylcholine, although the Colazal may have kicked in after being on it for a week.
 
From my personal experience and what I've read in medline, I'm a believer in phosphatidylcholine. The only side effect I read was "mild bloating". I thought it was worth a try for me.
 
I just wanted to put this out there as an FYI. Do with this info what you will...
 
Best regards!
 
 
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Phosphatidylcholine 4 (420 mg capsules) once/day


newucpat
Regular Member


Date Joined Apr 2008
Total Posts : 54
   Posted 5/19/2008 4:30 PM (GMT -6)   
which brand are you taking because on the vitamin shoppe site i did not find vitamin shoppe brand with 420 mg. i would like my husband to try it and see if it makes any difference. is it phospahtidyl choline only or the complex?? if you could let me know all the details that would be great.

wife of a UC Patient diagnosed on 3/3/08 started Asacol 3/7/08 2-3x a day
takes mutlivitamin/mutlimineral tablet, folic acid, vit. C, vit. E, selenium, turmeric


winni
Regular Member


Date Joined Jul 2006
Total Posts : 179
   Posted 5/19/2008 7:45 PM (GMT -6)   
from what i read in the articles when i googled this, apparently due to a study done on people who had a really hard time getting off steroids, this helped. I have been on pred for almost 2 years and everytime i get off i flare again. i just ordered a bottle of these pills, and i will start taking them when i taper below 20 mg of pred. it wont be for a couple of weeks, but ill keep people posted on if it helps or not!
Winni, 25

Diagnosed UC july 2006.
medications: colazal 9 daily, cortifoam 2x daily.
40 mg pred, 50 mg 6 mp- as of 5/11/2008
supplements:calcium, aloe gel, pro-biotics, tumeric
osteopenia from all this prednisone.
http://www.myspace.com/harshrealmbro


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 266
   Posted 5/19/2008 8:00 PM (GMT -6)   
Tressa.. I just might give those a try if I can find them... going to check the pharmacies tomorrow !! Is this the first time you tried them ??
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 2617
   Posted 5/20/2008 7:34 AM (GMT -6)   
I am afraid it will not do any good unless enteric coated, it will be digested before it gets to the colon
unless enteric coated, enemas may have a chance of working.
Old Mike

TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/20/2008 8:40 AM (GMT -6)   
Hi,
Jenn! How are you feeling? I've been worried about you! Can your doc get you in sooner?

Just to let you know: I'm bleeding a little harder again + mucus. No other symptoms, though. I still think it's worth a shot to try this. I've decided to take these for the 3 weeks that the bottle lasts and see if there's any benefit.

Old Mike has a good point about the enteric coating. They ones I have aren't. My hope is that it'll still have some benefit. The research suggests that, "patients with ulcerative colitis have significant less phosphatidylcholine in their intestinal mucus despite a comparable phosphatidylcholine molecular species composition pattern". Slow or retarded release is better, but where do you get that? Worst case is that it's a waste of $16. I don't think it'll hurt.

I'm taking the brand called "Solgar" it's just called "phosphatidyl choline" with a space in the word. It's not a complex, although they sell those, too.

Thanks for keeping us informed of your progress, too, winni. I really hope it helps! I hate to go off pred and then flare again! I really want to find a good way to maintain remission!
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Phosphatidylcholine 4 (420 mg capsules) once/day


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 2617
   Posted 5/20/2008 9:04 AM (GMT -6)   
TraciZ: You cannot buy enteric coated as far as I know, I have taken a lot of PC orally,rubbed it on my skin in
hopes of transdermal absorption, and have done a little in enema form. No luck for me. Some of us did
this when the report first came out.
I am having better results with digestive advantage IBS formula and this is with 28 years of UC.
Must have IBS on top of the UC, it seems to help with frequency and stool size, still have blood
but need to take longer.
Old Mike

TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/20/2008 9:14 AM (GMT -6)   
I've heard a lot about DA for crohn's/colitis and have some in my cabinet. I took 1 pill each day for 2 days, didn't really give it a chance.

How/where do you get the enemas?

My question is: how can I stop bleeding??? I've been bleeding for most of the past 3 years! I'm a bit frustrated by it.
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Phosphatidylcholine 4 (420 mg capsules) once/day


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 266
   Posted 5/20/2008 9:39 AM (GMT -6)   
Hey Tressa! I feel pretty much the same as last week.. or was it the week before.. lol. I still have alot of cramping. I sllep longer in the morning now and don't find I have to nap thru the day. So.. that's a little better than feelin like I sleep all day long !! I have been having one good day and then a few bad and then a good again... I was hoping to get one good full week in and then get back to work.. but so far it's a no go. At least I am over the bad cold I had last week, that was awful !!

I never would've gave a thought to what coating was on those pills!! :O( I had a look around for them lastnight but didn't see them. I think maybe I will wait it out until my free sample of digestive advantage gets here and check that out. I can't see my GI specialist until June... its getting closer at least!! I was in to see my regular DR last week and he took me off the sulfa pills because of the intense headaches they were giving me. So now I just take one pill in the night if I feel my symptoms are really bad. I guess this way when I see my GI I will be back to square one and she can start me on what she think fit.

Bleeding for three years.. that would get annoying !! Most times I just have blood on the tissue.. last week my bms were super dark on one side. And no I didn't eat blueberries... I find blueberries make it really dark sometimes. I figure maybe I am bleeding on one side.. maybe I will be one of those left sided colitis people.... we'll see....

Okay, take care Tressa !! You might as well finish the bottle of pills you have.. it can't possibly hurt right ????

Talk soon !!!
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/20/2008 9:54 AM (GMT -6)   
ugh. Nothing's ever easy, is it? Hang in there!
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Phosphatidylcholine 4 (420 mg capsules) once/day


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 2617
   Posted 5/20/2008 10:00 AM (GMT -6)   
Traci: Can't help with the bleeding, been bleeding since 1986, I am now 30 days on
DA with no adverse events from it.
As for the enemas you have to put some PC in a enema bulb and shoot it up, but I found
it to irritate. Perhaps it was too strong and needs to be diluted with something.
You really have to watch what you put into yourself some things can make you worse.
Old Mike
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