Some highlights from CCFA LA conference "IBD Hot Topics"

Just wanted to share a few things I heard at the conference. One of the most stunning talks was by Eric Vasiliauskas, MD, Assoc. Clinical Dir. of IBD at Cedars-Sinai on "Complementary Alternative Therapies: What Works and Why?"  I say stunning because he stated that he has found that certain herbs have shown to be very effective in the treatment of IBD, which were the very herbs I just started taking!  My mouth dropped.  He said they were pursuing a more formal study as a treatment, but the effort for some reason became too difficult and let it drop.  Obviously many had questions about this later on.  A Crohn's sufferer that owns an herb store told me he has had much success with it over the years for others with IBD, including himself, so that is why I started taking it over a month ago.  He said some improvement should be seen, but the real effect may take 3 to 4 months.  I happened to run into he and his wife at a restraunt last night and told him about it, wondering how he came across such information and he said he just came across it a few years ago and started combining it with another herb, which taken together, seems to help people with IBD over the years and the word must have spread.  Anyhow, I found that really intriguing to hear this from two independant sources. Though it has been costing me about  $130/month, plus another $30/month for a "colloidal blend" multivitamin, it is too soon to tell if there has been any huge benefit. Well the names are "Flavonex" and "Isatis Cooling" from Health Concerns and the other is "RF Plus" from NF Formulas, if anyone wants to check it out. Another add-on mentioned was something called "Colostroplex". Okay some other stuff mentioned was that often times he believes that some symptoms in IBD might simply be Small Bowl Bacterial Overgrowth (SBBO), which can be checked by a breath test.  If one goes on the SCD and later cheat, they would get immediate feedback, which would likely indicate SBBO.  I am not sure exactly what role SBBO plays with IBD, in his opinion, but I've understood it to be more common with IBS, so this may be addressing more of the urgency issue with IBDers.  Hopefully I can ask him one day.  If someone does go on the SCD, he said they should either go all in or not do it and torture yourself. He said Aloe seems to work better for UC than CD after 4 weeks.  Also some of these treatments show positive results in one study, but not much better than placebo in others, which shows there might be specifics not clearly defined.  Common probiotics used are Garden of Life, VSL3, Natren, Cultrelle, but not sure what his views are on their effectiveness.  He seemed to stress than he liked more formal studies done, but if something works for a person he'll take it to heart and it might take multiple ppl until he thinks something is there (as anyone should!).  For SBBO, he found success with "Ultra Flora Plus" by Metagenics. Some other things: Cats Claw can actually act similar to a steriod. Curcumin (turmeric) seems to help with UC after 6 months, depending on quality and where it is located... kind of hard to read my notes because he talked fast, so hopefully I'll get the presentation soon. Sorry, this is quite long, I just realized.  Might need a part deux for the other stuff. Heh. Oh, I am not affiliated with any of these companies. Only hope we can all find something that works for each of us. Regards, RQ

Just wanted to note that IBSers can also have "urgency" issues as well.

I also feel that what works for one does not necessarily work for all, for example, colostrum is suppose to be a huge benefit for CDers but I took it for over 3 months and noticed nothing...yet I took bee propolis one day and by the next day noticed significant improvements...it's also important to note that it usually takes more than one product (supplement) to get more benefit, which I noticed when I added fibre supplements, omegas 3-6-9 and probiotics (which are essential for both IBD and IBS) along with my bee propolis....I recently just added oil of oregano, another supplement that is suppose to be a huge benefit for bowel conditions (IBD/IBS).

:)

RelativelyQ and PB-- the IBS issue is definitely something that doctors should consider for many of us. My doctor has always told me that she thinks I have IBS also because she says "you feel a lot worse than you look" -- meaning my c-scopes look good but I feel like hell.

The best alternative treatment I've tried for IBS was hypnotherapy, which I've written about here before. It's worth mentioning again in case someone is interested. The GI center at Univ North Carolina -Chapel Hill has done a lot of research about hypnotherapy and IBS. I took one hypnotherapy course (with a UNC-trained psychologist) a few years ago and I am STILL feeling the benefits.

I agree, RQ, that it's great when a GI takes interest in alternative medicine. It makes a big difference to my treatment to have a doctor who doesn't think that it's all bunk. Unfortunately, most (all?) patients have to find the alternative treatments themselves without doctor guidance. Maybe that will start to change...

Thanks for posting. Sounds like a very interesting conference.

Supernurse, I don't recall if I have tried it, but I've heard of it before as a treatment.  Steriods don't seem to make much of a difference with me anyhow, unless I am in a severe flare (20-30bm/dy).  Can't remember if this Dr. said he has used it or if it was being looked into for IBD, but it does seem to be a natural steriod of sorts.

julee, interesting about hypnotherapy. Amazing how much our mind plays such a big role for control and how difficult it is to make your body obey this.  I think I'll give the Metagenics product a go--not sure if my pharmacy can order it or if I will need to go online.  Their website has some interesting research papers. Oh, another thing I forgot to mention is that he said if you had a cold sore in your mouth to just rub some of this probiotic on it at night and it will disappear by the next day.

Thank you for sharing this info.

Was there any theories mentioned on why this disease is more common in developed countries? Just curious.

So what about making a retention enema with cat's claw and some aloe, throw in a little vitamin E?

I found the CCFA site has been updated to include the notes/slides from this conference and figured all could benefit (plus, they aren't charging for it):
http://www.ccfa.org/chapters/losangeles/

I saw the ones on nutrition & diet (1A), alternative med/treatments (2A--actually this is not the one I saw, it says it is the 2007 version, which is annoying because I thought I had the wrong name originally, so I changed the name above and now I have to change it back... haha, oh well), Treatment updates for 2008 (4B) and interpreting clinical trials (3E).

Looks like a lot of other good presentations as well and a couple have been repeated.

Oh really? I was thinking about trying him. The drive would be killer though. Does he take most insurance? I like the fact that he has an open mind yet not "too open" to ignore all the good medical research--My impression was that he uses a healthy amount of skepticism.

I look forward to going through these slides, including the ones I missed. Hope others take the time to check them out.