Went to a CCFA education event last night

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Veteran Member

Date Joined Jan 2006
Total Posts : 3143
   Posted 5/1/2009 5:15 AM (GMT -7)   
It was a presentation by a physician/immunologist from Chicago, then a panel discussion with him and four local specialists.  The topic was reported as advances in treatments.  Although I was disappointed in the presentation as not very informative (it would have been over some peoples heads and boring to those that do a lot of their own research), I found the panel discussion very enlightening.
One of the biggest things I learned is....attend these where local docs sit on the panel.  You can tell a lot about a doc from their style at the presentation.  Since I am looking to change specialist, I realized one would never fit with me and one might be a very good fit.  I guess the two peds specialist don't work for me anymore tongue
There were some great discussion on top down theory of meds, a little debunking of some treatments I have seen posted here and they brushed on some of the newer meds in trials.  I have some notes to summarize for my local support group, but it was good to know that I am more up to date than the docs expect we are.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 5/1/2009 7:04 AM (GMT -7)   
Hi Thanks for the update..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 5/1/2009 9:22 AM (GMT -7)   
I am interested in some of your notes esp the debunking...just kinda curious...I like to stay on top of things.
"The earth laughs in flowers"

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 5/1/2009 10:22 AM (GMT -7)   
Me too. I think I can guess what they debunked, but I'm curious.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.

Go Saskatchewan Roughriders!

Veteran Member

Date Joined Jan 2006
Total Posts : 3143
   Posted 5/1/2009 11:05 AM (GMT -7)   
I am going to write them up this weekend. I guess debunking is a harsh word. More like a better education on the downsides or the lack of data on many highly touted treatments
1) downsides of the fecal transplant everyone was talking about (I did not know how potentially lethal some of the prep was)
2) the recent push for Vit D supplements versus the fact that 3 docs said every patient they see regardless of Cd/UC is D deficient. I loved the doc that pushed trying to eat the foods over buying so many supplements. unfortunately the marketing person for a local health food store tried to hijack the panel discussion. I don't mind her having thoughts and opinions, but her questions were formatted as a marketing pitch more than a question. They quashed her aloe vera discussion mostly with requests for proof of her claims.
3) "Top Down theory" of treatment and problems with the original study with a prospective study in the works. I still don't believe in the top down theory, but they explained why the theory was not showing as positive a result in the US as it did elsewhere
4) Although I jumped on the stem cell band wagon as quickly as I have ever done any jumping, they had good information on the flawed tests, the results showing placebo patients showed better results than the meds patients and the media push in our local area. I really wanted this to work, but they had good reasons for me to doubt any real progress in the area for at least some time.
5) I asked a lot about probiotics. The main speaker mentioned that he saw much lesser results in CD versus UC with VSL 3. I asked him to clarify and he said that they "just don't know" yet what the benefits of probiotics are for certain. i appreciated his candor in the I don't know. He went further to say that he sees no harm in them and will add them as part of care, but feels that to forego other care and replace them with probiotics just is not proven yet.

Those were the highlights as I saw it for the "downsides of current treamtnets discuss. They also mentioned many of the more recent trials. I am going to research one med more as it looked interesting. The cool thing is this counts on my job performance review as 1 of 2 required educational classes!
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 5/1/2009 12:00 PM (GMT -7)   

Habs, agreed "debunking" is not correct. Thanks for the report.

Supplements: I want to make sure I understand...are you saying the docs took vitamin D issues lightly and that it was BECAUSE they see so much vitamin D deficiency...and that they DON'T recommend vitamin D supplements?

Stem Cell: It is my understanding some of the placebo patients lied about how they were doing. The jury is still out on this one, and this topic was discussed elsewhere in HW thread that did a pretty good job of providing explicit details and links to info about the experiment design flaw.

Fecal transplant: isn't this for UC, not Crohn's?  

Supplements vs food sources: it's true that food is the best source for many nutrients, partly because scientists have not identified all nutrients in foods. So you might think that instead of eating an orange you can just take vitamin C, but , according to the following link, an orange has much more than just vitamin C. It has "over 170 different phytonutrients and more than 60 flavonoids, many of which have been shown to have antinflammatory, anti-tumour and blood clot inhibiting properties, as well as strong antioxidant effects."

However, supplements will always play a role. Your average menstruating female is not likely to be able to replenish enough of the iron she loses unless she eats a lot of liver. And those of us in Northern climes could run around naked all day in the winter (if we didn't freeze to death) and still not get enough vitamin D. Vitamin D deficiency is not only suspected in inflammatory diseases and cancer, but also is directly correlated with overactive parathyroid glands, calcium leached from your bones (to keep the level in your blood high enough), and failure to absorb calcium.  

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/1/2009 12:55 PM (GMT -7)   
Thanks for the info Habs:)
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 5/1/2009 10:28 PM (GMT -7)   
I expect that the doctors were saying that they see a lot of vitamin D deficiency in the general patient population. This is no reason to dismiss vitamin D deficiency as a contributor to Crohn's. The discoveries of a number of genetic differences that are associated with Crohn's could just be pointing to individual reactions to vitamin D deficiency that result in Crohn's. It is suspicious that vitamin D is known to be an immune regulator and deficiency is commonly connected with several autoimmune diseases. The doctors are just waltzing around their lack of knowledge, but ignoring the deficiency is just mental laziness. That and vitamin D is not known to be a cure for Crohn's, so they feel that they can ignore it. Vitamin D still has the reputation of being dangerous in high doses. Doctors shy away from something that is not sold by big pharma that may have negative effects, because if they use or recommend it, the fallout of any adverse effects will land on them. BTW, the dangerous levels are on the order of 80,000 IU a day, except for geriatric patients and children.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 6:43 PM (GMT -7)
There are a total of 2,905,968 posts in 318,906 threads.
View Active Threads

Who's Online
This forum has 158250 registered members. Please welcome our newest member, 4som1.
365 Guest(s), 15 Registered Member(s) are currently online.  Details
Tim G, JayMot, mattamx, Jerry L., PatrickMA, Skypilot56, artvark, WalkingbyFaith, Progressing, exqualls, FamilyGuy, UCer23, scar1919, Goat0724, carnut