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Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/10/2009 4:12 AM (GMT -6)   
Are any institutions/scientists seriously doing research in this area?
Isn't there any real progress witn hospital research or whatever?
The internet - like this forum - is full of good advice - but so many that there is so much to try?
 
 

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 1/10/2009 6:01 AM (GMT -6)   

Qvist -

You are right about there being so much to try.  The reason is that UC is a very personalized disease, unlike diabetes where you get diagnosed, and the doctor immediately has something to help you get things under control, with UC it is purely trial and error.  Everybody reacts differently, and so there is no one thing to tell EVERYONE to do or not to do.  All we can talk about is what helps us personally, and to speak in broad generalities about what does and doesn't work. 

There are only two universal suggestions I can make.  One is to find a probiotic that works for you, and the other is to keep a food/med journal.  This will help you to narrow down what you tolerate, what meds/supplements help, and what lessens symptoms for you.

As for research, there is almost always something being looked at by the medical community.  I live in the Denver area, and my doctor were talking about local studies being done, and he provided me a list of 8 trials going on in the area right now.  If you are interested in doing a medical trial, contact your GI and ask him.  You can also go to the Crohn's and Colitis Foundation website and click on research.  Another place I've seen studies listed is on Craig's List in the community section under groups or general.  Here is a link to the Crohn's Colitis Foundation research site:

http://www.ccfa.org/research/?LMI=6

Good luck in finding relief.  The good thing is that you can try things and if they don't help, try something else.  You have nothing to lose by trying out diets, supplements, etc, but you have everything to gain.


 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: VSL#3, Lialda, Allegra, multi-vitamin, Wellbutrin XL, fluoxetine, and vit B-12.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/10/2009 8:17 AM (GMT -6)   
There seems to be tons of research going on, but my theory is that UC is such a rare, rare disease (as is CD, the other half of IBD) - 1 in every few hundred people - compared to the heavy hitters like cancer, HIV and heart disease, that it is a distant poor cousin in terms of public and private funding. If UC was as common as heart disease, I'm sure we'd have a 95% controlled (drug-maintained) cure rate a long time ago. The other factor at play, I think, is that the FDA has slowed the development process for new therapies to a crawl, making 10 years plus typical from initial research to the first drugs to hit the market; and then there is the issue of insufficient profits for Big Pharma when it comes to natural things - such as parasitic worms and worm eggs- which cannot be patented as fully as drugs and/or which might offer permanent long-term cures instead of dependence on constant intake of drugs. So sadly, I think things will progress very slowly. Once we can map our own individual genomes for a few thousand dollars, as may be possible in 10 years, I think things will pick up as we move toward more individually tailored drugs and probiotics rather than the trial and error approach used now.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/10/2009 11:18 AM (GMT -6)   
I'd like to thank the person who developed Probiotics.
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06
Currently in remission

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

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose


Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/10/2009 11:20 AM (GMT -6)   
subdued said...
I'd like to thank the person who developed Probiotics.

Which do you eat??
According to your Avatar you seem to be Med-free?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/10/2009 12:23 PM (GMT -6)   
There's a lot of research going on with IBD, check out the CCFA and CCFC (american and Canadian IBD foundations).

Probiotc, IBD really isn't that rare, it's estimated over 800,000 people across north america have it and since being at this site (HW) for the last 5 yrs I've seen more newbies than ever.


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


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/10/2009 12:36 PM (GMT -6)   
 
Nearly one million people have IBD. I think the lack of disease awareness (probably because it's so embarrassing) also affects research.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/12/2009 1:10 AM (GMT -6)   
Qvist said...
subdued said...

I'd like to thank the person who developed Probiotics.

Which do you eat??
According to your Avatar you seem to be Med-free?


I'm probably not taking the best ones. I prefer to buy my Probiotics at the drug/food/vitamin store, that way I know I'm not getting fake pills. I buy what I can find. Most contain acidophilus. Some might also have other things like bifidum, longum, ... I'm open to suggestions if you know of any brands that are sold in stores and are particularly good. Thanks.
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06
Currently in remission

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

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/12/2009 1:23 AM (GMT -6)   
pb4 said...
There's a lot of research going on with IBD, check out the CCFA and CCFC (american and Canadian IBD foundations).

Probiotc, IBD really isn't that rare, it's estimated over 800,000 people across north america have it and since being at this site (HW) for the last 5 yrs I've seen more newbies than ever.


:)


I'm not surprised. I don't think my colon would be in such bad shape if it wasn't for all the fructose beverages I was drinking, in particular vitamin water and bubble teas. Gosh. It's hard to believe that someone would sell something that sounds so healthy as vitamin water only to put crystalline fructose (high-fructose corn syrup) in it.

It seems that the usage of high-fructose corn syrup might finally be leveling off. I hope the word is finally getting out about how bad the stuff is.

http://www.ers.usda.gov/AmberWaves/February08/Findings/HighFructose.htm
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06
Currently in remission

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

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose


Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/12/2009 1:54 AM (GMT -6)   
My brother have a friend who is doing a university study on how sugar affect the body. I don't know the details, but I know he said to my brother that the findings are pretty scary.
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