Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
For some background, I was diagnosed with moderate UC about six years ago, Asacol treated me the first time, then I only had mild symptoms for five years before i had another moderate flare (5/10) and had to go on prednisone/Asacol for treatment. After coming off prednisone, I felt my symptoms coming back and after a lot of reading (I'm a PhD chemical engineer in biotech) combined Asacol with 2 statchels of VSL3/day. I now am normal - I wanted to pass on my story in case it can help some people. I understand that my symptoms were moderate compared to what some of you are dealing with, but I thought I would share.
Why probiotics, and I apologize in advance if this is redundant for folks? UC is a Treg disease, in short your immune system has to constantly sort between antigens that are self and antigens that are benign and antigens that are harmful. You have a tremendous amount of flora in your large intestine (60% of the dry weight in your crap) so you can imagine that this gets quite complex for the immune system as it has to sort between benign/helpful bacteria and things like C-diff ect. The cells that control this regulation are called Tregs and there job in life is to down regulate the immune systems when appropriate.
Likely due to western diet, and the fact that we are too clean in the western world and don't have parasites ect (another story altogether) , its quite easy for our Tregs to get downregulated in western society. Consequently, I read up quite a bit on how to upregulate Tregs. After numerous reviews, the things I identified are Vitamin D, fish oils, probiotics, and vitamin A. The key to this is that you can't screw around - For fish oils, you need 4-5 grams/day. That's alot of pills. For probiotics, I take two satchels of VSL3/day. I'm highly confident that the run of the mill "probiotics" do not have enough kick to make a difference in your LI flora as you have so much mass there to begin with (again 60% of your crap is flora). Why VSL3 versus others - I haven't done a detailed study on other probiotics but VSL3 contains the bacteria that were cited in this PNAS paper to eliminate UC in murine studies. (See Proceeding of the National Academy of Sciences, Kwon, 2009, pg 2160 - its freely accessed)
So in short - it really made a big difference for me and has a lot of technical merit. I would never say don't take your meds - they should always be used. But I would definately take an integrative approach and try to support the western meds with probiotics. My doctors really diminished the use of probiotics, but the more mechanistic side suggests that there is something to it. The lack of clinical studies is more due to the cost of such studies for non-patentable products more than anything else. Lastly, it can't hurt and its worth a shot - but again don't screw around, make sure you buy probiotics that have been shown to help in the PNAS paper. They all aren't the same.
Hope this helps - I would be happy to talk science with those that are interested - mbseefeldt@yahoo.com.
Matt
Why probiotics, and I apologize in advance if this is redundant for folks? UC is a Treg disease, in short your immune system has to constantly sort between antigens that are self and antigens that are benign and antigens that are harmful. You have a tremendous amount of flora in your large intestine (60% of the dry weight in your crap) so you can imagine that this gets quite complex for the immune system as it has to sort between benign/helpful bacteria and things like C-diff ect. The cells that control this regulation are called Tregs and there job in life is to down regulate the immune systems when appropriate.
Likely due to western diet, and the fact that we are too clean in the western world and don't have parasites ect (another story altogether) , its quite easy for our Tregs to get downregulated in western society. Consequently, I read up quite a bit on how to upregulate Tregs. After numerous reviews, the things I identified are Vitamin D, fish oils, probiotics, and vitamin A. The key to this is that you can't screw around - For fish oils, you need 4-5 grams/day. That's alot of pills. For probiotics, I take two satchels of VSL3/day. I'm highly confident that the run of the mill "probiotics" do not have enough kick to make a difference in your LI flora as you have so much mass there to begin with (again 60% of your crap is flora). Why VSL3 versus others - I haven't done a detailed study on other probiotics but VSL3 contains the bacteria that were cited in this PNAS paper to eliminate UC in murine studies. (See Proceeding of the National Academy of Sciences, Kwon, 2009, pg 2160 - its freely accessed)
So in short - it really made a big difference for me and has a lot of technical merit. I would never say don't take your meds - they should always be used. But I would definately take an integrative approach and try to support the western meds with probiotics. My doctors really diminished the use of probiotics, but the more mechanistic side suggests that there is something to it. The lack of clinical studies is more due to the cost of such studies for non-patentable products more than anything else. Lastly, it can't hurt and its worth a shot - but again don't screw around, make sure you buy probiotics that have been shown to help in the PNAS paper. They all aren't the same.
Hope this helps - I would be happy to talk science with those that are interested - mbseefeldt@yahoo.com.
Matt
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I've been struggling lately on what to do with my life since I no longer have a caregiver role. I decided to write a list of hobbies and things I like to do as a reminder to myself. I encourage you to create your own list of likes/hobbies/or things you'd like to try. Here's a few of my things:Going to the beachTrying new restaurantsMaking lists/planning for the future Road...
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I know that we all have issues at times whether it is my computer or DS. Often we get through it. But I would just love to know the explanation of all the Gateways.I've had a 404 page not found.504 Gateway time out.403 Forbidden.I sooo hate it when I sent a post and doesn't go through. On some Gateways I get them back. On other's not so much and so frustrating.Please if you will explain...
Matt
My GI doc told me if I want to take probiotics take them. So I did, for several years, different kinds, high end and low end, refrigerated and non refrigerated. And then I thought, does this really help me? So I went off of them earlier last year, and I was right. I felt no different. One less pill to shove in my mouth.
I say give 'em a try for sure. But I wouldn't blow a lot of money on them unless you were really desperate.
In the PNAS paper they reference the following for mice:
These include L. acidophilus (LA), L. casei (LC), Lactobacillus
reuteri (LR), Bifidobacterium bifidium (BB), and Streptococcus thermophilus
(ST). After determination of the optimal dosage (5 108
cfu/day;
Personally, I find good old fiber to be the greatest relief for me and my disease from a maintenance standpoint. This disease can be pretty individualized, and affect people differently. So there's no one size fits all approach, which is why some things work for some, and some things don't.
Per you other thread, you stated that you are having a hard time getting into the doctor's office. Call up the GI clinic and state that you have blood in your stools - those are key words that tend to put you at a higher priority.
If that still doesn't work, go to the ER. Its stupid that our US health system requires this sometimes, but you'll get treated that way.
Keep taking the asacol, it does take a long time to kick in if it is going to work. It only provides remission 60-70%% of the time, so its good to start building in an integrative approach.
Matt
anyway).
for me, i find that it doesn't matter so much which pills i take, as long as they are fresh, kept in the fridge and i take at least 4 a day, plus i eat a lot of yogurt.
Treatment of Relapsing Mild-to-Moderate Ulcerative
Colitis With the Probiotic VSL # 3 as Adjunctive to a
Standard Pharmaceutical Treatment: A Double-Blind,
Randomized, Placebo-Controlled Study
The American Journal of GASTROENTEROLOGY VOLUME 105 | OCTOBER 2010 www.amjgastro.com
OBJECTIVES: VSL # 3 is a high-potency probiotic mixture that has been used successfully in the treatment of
pouchitis. The primary end point of the study was to assess the effects of supplementation with
VSL # 3 in patients affected by relapsing ulcerative colitis (UC) who are already under treatment with
5-aminosalicylic acid (ASA) and / or immunosuppressants at stable doses.
METHODS: A total of 144 consecutive patients were randomly treated for 8 weeks with VSL # 3 at a dose of
3,600 billion CFU / day (71 patients) or with placebo (73 patients).
RESULTS: In all, 65 patients in the VSL # 3 group and 66 patients in the placebo group completed the study.
The decrease in ulcerative colitis disease activity index (UCDAI) scores of 50 % or more was higher in
the VSL # 3 group than in the placebo group (63.1 vs. 40.8; per protocol (PP) P = 0.010, confidence
interval (CI) 95 % 0.51 0.74; intention to treat (ITT) P = 0.031, CI 95 % 0.47 0.69). Significant results
with VSL # 3 were recorded in an improvement of three points or more in the UCDAI score (60.5 %
vs. 41.4 % ; PP P = 0.017, CI 95 % 0.51 0.74; ITT P = 0.046, CI 95 % 0.47 0.69) and in rectal bleeding
(PP P = 0.014, CI 95 % 0.46 0.70; ITT P = 0.036, CI 95 % 0.41 0.65), whereas stool frequency
(PP P = 0.202, CI 95 % 0.39 0.63; ITT P = 0.229, CI 95 % 0.35 0.57), physician s rate of disease
activity (PP P = 0.088, CI 95 % 0.34 0.58; ITT P = 0.168, CI 95 % 0.31 0.53), and endoscopic scores
(PP P = 0.086, CI 95 % 0.74 0.92; ITT P = 0.366, CI 95 % 0.66 0.86) did not show statistical differences.
Remission was higher in the VSL # 3 group than in the placebo group (47.7 % vs. 32.4 % ; PP P = 0.069,
CI 95 % 0.36 0.60; ITT P = 0.132, CI 95 % 0.33 0.56). Eight patients on VSL # 3 (11.2 % ) and nine
patients on placebo (12.3 % ) reported mild side effects.
CONCLUSIONS: VSL # 3 supplementation is safe and able to reduce UCDAI scores in patients affected by relapsing
mild-to-moderate UC who are under treatment with 5-ASA and / or immunosuppressants. Moreover,
VSL # 3 improves rectal bleeding and seems to reinduce remission in relapsing UC patients.
I wonder about the " higher in the VSL # 3 group." As in any positive effects group, how many are experiencing the placebo effect and how many are seeing actual results from the tested compound? It doesn't mean that 47.7% are for sure experiencing the positive effects of VSL # 3 does it? I don't know.
With regards to your last point, 32% of patients see remision taking 5-ASA's alone, 47% with the combination therapy of VSL#3. The p-value demonstrates that difference is statistically significant, essentially controlling for the placebo effect.
Matt
We can go back to the remission data, which had a p-value of 0.069. This means that there is essentially a 6.9% chance that the difference's observed between the drug and placebo group are complete chance and have nothing to do with therapy. Flipping it the other way, they are 93% confident that taking 4 sachels of vsl#3 for eight weeks will improve outcomes.
Hope that helps.
Matt