Some highlights from CCFA LA conference "IBD Hot Topics"

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relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 4/5/2008 1:04 PM (GMT -6)   
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


Pancolitis '04
Mild flare
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Iron

Post Edited (relativelyquantum) : 5/6/2008 10:59:54 PM (GMT-6)


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/5/2008 6:29 PM (GMT -6)   
Thanks for posting this! It's very interesting to hear.

The part about SBBO and success with "Ultra Flora Plus" made me remember that my GI told me that one of her UC patients had amazing success with a product that sounds very similar to that. I wonder how often SSBO is being treated as UC... I will bring this up with my doctor when I see her next. Maybe we'll be hearing more about this soon.

Thanks again for sharing your notes!
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/5/2008 8:46 PM (GMT -6)   
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).

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 4/6/2008 12:24 AM (GMT -6)   
Glad you could benefit julee. I have to say that it was both a relief and comfort that a GI would take such an interest in alternative medicine, especially with such a reputation. Also like that he thinks outside of the box, because his approach seemed rational (not jumping on a bandwagon, in part) and taking many different considerations into account. Treating SBBO may help a great many of us. He said that some people feel better (symptom wise) after the colonoscopy and thank the Dr for it, but he says he didn't do anything special, it was likely just clearing out of their system. To treat it, antibiotics maybe used (Xifaxan primarily, Neomycin, Doxycycline, Augmentin) and also Vivonex or a diet low in carbs and of course that probiotic brand. I'll be bring it up with my GI next time as well.

pb, it makes me wonder how many of us also have IBS--I know some have mentioned it. Not sure I had it before, but since my last flare it makes think I just might. I haven't tried bee propolis yet (still in the fridge), but the oregano oil seemed to help.
Pancolitis '04
Yet to ever go into remission: maintaining at the moment
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Borage Oil, Iron, Oregano Oil


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/6/2008 8:19 AM (GMT -6)   
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...
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/6/2008 9:41 AM (GMT -6)   
Thanks for posting RQ. I think I'll have to try some alternative therapies this summer.
Diagnosed August 2007 at age 18
3 Asacol 3x/day
1000 mg Canasa at night


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 4/6/2008 12:05 PM (GMT -6)   
Thanks for posting. Sounds like a very interesting conference.
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


Supernurse
Regular Member


Date Joined Aug 2006
Total Posts : 96
   Posted 4/6/2008 12:47 PM (GMT -6)   
Anyone out there tried Cats Claw ? I'm going to give it a try.

Diagnosed May 2005- left sided UC.Diagnosed with iritis in my Right eye March 2007
On Pentasa 8 tabs a day
Also on Pentasa enemas one daily to treat current flare.

Plus Aloe vera, probiotics, multi vits, turmeric,bromelain.


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 4/8/2008 6:24 PM (GMT -6)   

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.


Pancolitis '04
Yet to ever go into remission: maintaining at the moment
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Borage Oil, Iron, Oregano Oil


Supernurse
Regular Member


Date Joined Aug 2006
Total Posts : 96
   Posted 4/9/2008 1:00 AM (GMT -6)   
Thanks........I'll give it a try and then I can let people know if I had any success.I would prefer to try natural remedies rather than take more and more medication.

Diagnosed May 2005- left sided UC.Diagnosed with iritis in my Right eye March 2007
On Pentasa 8 tabs a day
Also on Pentasa enemas one daily to treat current flare.

Plus Aloe vera, probiotics, multi vits, turmeric,bromelain.


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 4/9/2008 7:47 AM (GMT -6)   
Thank you for sharing this info.

Was there any theories mentioned on why this disease is more common in developed countries? Just curious.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 4/9/2008 2:33 PM (GMT -6)   
love4cats,
Not that I recall. Some discussed how concerning it is we really don't know--how is one then going to treat the disease if we don't understand it? I believe they said the usual factors leading to IBD are Environment, Antibiotics, Genetics, and maybe others (diet?). One of the speakers is looking into the role of probiotics, which specific ones for specific individuals and what triggers could be involved.

My own thoughts, if you don't mind, are to look at the specific differences developed countries have with those less developed, in general: antibiotic use (even once), diet, and outdoor activity. Antibiotics could destroy the very guys that helped bring balance to our system. Though our lives may be saved because of antibiotics, there have been studies that show autoimmune conditions result from them (one comes to mind: mice developed allergies after exposure to antibiotics and allergens, whereas those that did not receive antibiotics did not develop this condition). Having an improper diet also affects the proliferation of which microbes in our gut survive and our overall health in general. I could go on as to why I believe this to be the most promising to research, but I'll refrain for now. (Maybe there is something to that "fecal matter transplant" idea--so many microbes that we are unaware of their role.) Not getting enough excercise and getting enough Sun may also be a factor for some, because our ancestors likely got much more than us, and there is some link with lack of vitamin D and certain diseases. I don't think there is hard data for this and I'd be inclined to think of it as a secondary factor.
Pancolitis '04
Yet to ever go into remission: maintaining at the moment
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Borage Oil, Iron, Oregano Oil


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/9/2008 6:16 PM (GMT -6)   
So what about making a retention enema with cat's claw and some aloe, throw in a little vitamin E?
Proctitis DX 1998
Lialda 1x day
Hydrocort Enema As Needed


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 4/10/2008 8:57 PM (GMT -6)   
I wouldn't know. Makes one wonder if it would help. I've tried aloe enemas without success.
Pancolitis '04
Mild flare
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Iron


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 5/6/2008 10:57 PM (GMT -6)   
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.
Pancolitis '04
Mild flare
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Iron


demchim
Regular Member


Date Joined Dec 2005
Total Posts : 124
   Posted 5/7/2008 2:47 PM (GMT -6)   
Hi RQ,

I'm glad the conference was so informative. Dr. "V" is actually my IBD doc and he's really good..
I'm bummed I miss it.
Thanks for the update!

sb

relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 5/9/2008 9:59 PM (GMT -6)   
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.
Pancolitis '04
Mild flare
Taking Rowasa, Probiotics, Fish Oil, Folic Acid, Alpha Lipoic Acid, Iron


demchim
Regular Member


Date Joined Dec 2005
Total Posts : 124
   Posted 5/12/2008 10:17 PM (GMT -6)   

Actually, he's very on top of the research and everything he recommended (5-ASA and folic acid to decrease the risk of colon ca. etc) I found out has been documented in research.  He also does a lot of research himself.

I like the fact that he doesn't push meds (he makes recommendations but ultimately leaves it up to you).  I will be moving on to San Diego next year and plan to stay to with him.  My bro travels from Arizona to see him for his yearly colonoscopies.

In terms of insurance, I know he takes PPO, not sure about HMO...you may want to call about that.

Good luck and let me know if you need any info...my email is demchim@yahoo.com

sb
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