interesting info from my doctor

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.

Hi Kristyn,

That is good info, i'm on pred now for the first time (for my kidneys and uc), I hope I can taper off and will definintely keep this in mind.  Please keep us posted.

btw, who are you seeing at MA General? My friends dad goes there and just finished a Humira study for UC, I think he was on the placebo but now is on regular Humira and is doing really well.

Also, I plan to go to there at some point for a second opinion for drug treatments.

To the best of our knowledge there have been a couple published papers using enteric PC capsules for colitis (one of which is attached). However, he uses a PC of low purification grade (with 30% PC only!) while the main components of phospholipids in mucus are phosphatidylcholine and lysophosphatidylcholine with up to 90%! Therefore, it's advisable to
administer PC as pure as possible. Furthermore, there are no data showing that you get more PC with that poorly purified released material to the colon than with pure PC (PhosChol). Even if most of the pure PC is absorbed in the upper GI-tract, a significant part remains for the lower part. At least, first publications with pure PC have shown a positive effect on
ulcerative colitis, too. And, two of these publications are even mentioned in the reference list of Stremmel's paper (nos. 16 and 17).

I mention all of the above regarding a purified preparation of PPC as we believe that there is no commercially available enteric coated capsule. Our understanding is that the product used in this study was provided especially for this study and that the authors and or partners of the authors are considering a use or product patent application for treating colitis with a slow release capsule. We have no additional information as to when or by whom such a capsule will be made available to the market.
We strongly suggest that you use PhosChol, Phosphaline (distributed by Xymogen) or Hepato Pro (distributed by Life Extension). Only these three products are 100 percent purified PPC and capable of delivering a therapeutic dose of 1,2 dilinoleoylphosphatidylcholine (DLPC). For this reason, any other non-purified phosphatidylcholine or triple strength
lecithin product is not recommended for acute or chronic conditions.