Alternative treatments

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poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 4/27/2008 10:26 PM (GMT -6)   
Hi everyone...

I had poseted about this a couple of months back, and now have actually tried it and wanted to get the information back out there...

I had a really bad string of horrible reactions to medications...prednisone, remicade, 6mp...and ultimately felt the medication was making me feel more sick (because of the side effects) than I really was. I decided to come off all medications for a while...except my asacol. My doctor also recommended this:

I also wanted to alert you to something you could do that might be helpful AND has no toxicity. There is recent interest in a compound called "Phosphatidyl choline". This is an important component of cell membranes and of the mucus that covers the colon. In health food stores, they often sell "Lecithin" which is made up of phosphatidylcholine and some other compounds. If you check on line, there are numerous web sites that sell phosphatidylcholine - but they vary in the purity of the compound. Many of them sell compounds that contain 30-35% phosphatidylcholine, others sell a more pure (90%) compound. It now is a common supplement taken by people for all kinds of things.
Recently, an important article was published in the Annals of Internal Medicine (2007; 147:603-610). This study looked at patients with ulcerative colitis who could not be tapered off steroids. The patients were randomized to take phosphatidylcholine 2 grams per day or placebo. After 12 weeks, 80% of the patients given phosphatidylcholine were off steroids compared with only 10 % of patients given placebo.
You might consider taking this as a vitamin supplement. There are no downsides - it is extremely safe. There are many websites that sell it. But, one site that sells pure PC is www.phoschol.com. On that site, the pills contain 900 mg of pure phosphatidylcholine, so you would take 2-3 pills per day.


I went to the website and ordered the pills...have been taking 2 a day for at least 2 months...no flares...no blood...maybe 2 BM's a day. I could just be in a "good pahse," but I am hoping that this is helping and I will not flare again soon!! I am running out of medications taht work for me!

Hope this is helpful to someone...i really would suggest trying it, or at least researching it.

Take Care,

Kristyn

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Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4412
   Posted 4/27/2008 10:50 PM (GMT -6)   
Were you flaring before starting this? Glad you are feeling well.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 4/28/2008 4:52 AM (GMT -6)   
And what do you call a flare?

The reason I ask is that a good phase for me is 8 BMs a day, and flaring for me is when BMs are over 20 a day.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - 2xColazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1xteaspoon of Metamucil 3 times a day;
    - 1xBIOCeuticals UltraBiotic 45 per day + 1xSB FlorActiv per day.


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 4/28/2008 8:08 AM (GMT -6)   
A study of phosphatidylcholine was done a few  years ago and many people have tried it without any success including myself.
 
The study used a special form of retarded release of phosphatidylcholine which cannot be purchased anywhere. See link below
 
 
 

quincy
Elite Member


Date Joined May 2003
Total Posts : 30704
   Posted 4/28/2008 9:26 AM (GMT -6)   
Severin said...
And what do you call a flare?

The reason I ask is that a good phase for me is 8 BMs a day, and flaring for me is when BMs are over 20 a day.

seems like you may be waiting a LONG time between 8 bms and 20 before determining a flare?
 


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 4/28/2008 6:40:25 PM (GMT-6)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/28/2008 11:36 AM (GMT -6)   
Hm, so mudua, from what you have experienced and heard, you're saying that the "regular" phosphatidylcholine doesn't work too well?
Is this stuff expensive? I'm willing to try anything right now.
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects)
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 4/28/2008 11:42 AM (GMT -6)   
Does retarted release mean that it's released in the colon? As opposed to the stomach, or somewhere else?

Also, side effects include gas & diarrhea!
http://www.pdrhealth.com/drugs/altmed/altmed-mono.aspx?contentFileName=ame0344.xml&contentName=Phosphatidylcholine&contentId=500

poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 4/29/2008 6:29 AM (GMT -6)   
when im not flaring (like now) I have 2-3 bm's a day....when I am flaring I go 15 times a day.

I was beginning to get symtoms when I began taking this supplement, but was not in a full flare.

I really do believe that everything does not work for everyone...but I have tried all teh medications that people on here rave about and they do not work...this has worked for me (for now). I have been stable and not in a flare for a longer time period than I ever have been.

I payed $61 for 100 pills (i take 2 daily) I bought them here...www.phoschol.com

Like I said, maybe not for everyone...but I was at the end of the line...and before going on more immunosuppressants...I personally wanted to try this. Again, hope this is helpful for SOMEONE

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TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 4/29/2008 8:29 AM (GMT -6)   
Thanks, poohbear37. I'm looking into it and am very interested from what I've read. Hopefully, it'll work for me, too. I'm sick of being sick!

yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 4/29/2008 12:34 PM (GMT -6)   

Is lecithin the same as phosphatidyl choline? And does it work on inflammation, or just with mucous production in the colon?

 

--------------------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colozal

drink 1 Haldi daily tongue

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