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Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 8/29/2008 11:45 AM (GMT -6)   
I have noticed in reading that probiotics help w/ uc.  Do you drink Kieffer as your probiotic?
 
Thank you
Diagnosised 8/25/08

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 8/29/2008 12:23 PM (GMT -6)   
does it contain good bacteria? Either way, coconut is a natural anti-fungal, which can only be good for you.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/29/2008 4:59 PM (GMT -6)   
If you do a search, I'm sure you'll find a lot of threads about probiotics. It's a frequent topic of discussion here. I use Primadophilus Reuteri by Nature's way. Others use a variety, including Culturelle or VSL #3.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/29/2008 5:49 PM (GMT -6)   
I don't bother with kefir or yogurt. I use a probiotic supplement - Healthy Trinity by Natren - so I know I'm getting the highest amount of viable probiotics and proven strains without having to worry about other ingredients like added sugar or dairy.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 8/30/2008 9:26 AM (GMT -6)   
I just recently heard about Kieffer. It sounds like a good thing if you can tolerate milk. I cannot at the moment, but when I get better I plan on searching it out and making smoothies for breakfast.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Strangely I find that eating a turkey and ham sub from Subway with lots of vegis will help me come out of a flare. Why I don't know. I stay away from fats or my D will just get worse.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 8/30/2008 10:00 AM (GMT -6)   
princesa -

Could you outline your treatment history (here or in another thread)?

You say long term remission in your signature, so I would like to know what road led you there. Understanding the circumstantial, it would be nice to see how someone with UC ran into all-natural and have stayed there.

Quite frankly, if someone assured me that drinking a bunny rabbit in a blender once a week would put me into pong term remission, I would do it.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/30/2008 10:07 PM (GMT -6)   
My naturopath has me using Replete, it's expensive but "strong." It's a powder, tastes like weak sweat tea (I think it's supposed to be apricot flavored, and probably has sugar) and mixes well with water or soda or Propel (my favorite). I'm supposed to switch to a probiotic pill after a couple of months of half a pack of Repelte a day (each pack is about $5)(I was pretty bad off to start with).
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/30/2008 10:24 PM (GMT -6)   
Lucky777 said...
princesa -

Could you outline your treatment history (here or in another thread)?

You say long term remission in your signature, so I would like to know what road led you there. Understanding the circumstantial, it would be nice to see how someone with UC ran into all-natural and have stayed there.
I would not describe myself as "all natural." I do take a low, maintenance dose of Azulfadine (sulfasalazine) as a precaution, even though I've been mostly in remission for several years. The ASAs are the safest of all the drugs given for IBD and a "complimentary medicine" approach is what I choose - using meds when necessary and natural therapies.
 
I was extremely ill the first two years after my diagnosis. I spent alot of time researching UC and reading everything I could get my hands on. A lot of trial and error brought me to where I am today. A combination of dietary changes and natural supplements to reduce inflammation, heal the gut and rebalance healthy gut ecology is what worked for me. If you'd like details, shoot me an email... I'd be happy to chat with you.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 8/31/2008 2:41 AM (GMT -6)   
It never hurts to try a probiotic. The worst that will happen is that it won't help, the best is that you'll get some relief. For myself, the probiotics with more strains of good bacteria are more helpful than the ones with lots of a couple kinds of bacteria. Problem is the price a lot of the time. Princessa has got it right, trial and error is the way to go. Everyone's colitis is different as you'll discover reading through all the threads. Hope you can find something soon.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/31/2008 2:20 PM (GMT -6)   
I'll add in my experience, you get what you pay for. It's tempting to buy the cheaper brands that are easy to find, but out of the store brands I tried, none of them made a difference for me. The strain, not just the genus (ex. lactobacillus) and species (ex. acidophilus.), is critically important. Number of viable organisms at time of consumption is important, too. Seven to ten billion colony forming units per day is recommended for adults with IBD.

Some suggestions for choosing a probiotic from Listen to Your Gut:

1. Choose a probiotic packaged in a dark glass bottle and manufactured at a Current Good Manufacturing Practices facility.

2. Different species should not be touching each other.

3. Choose probiotic that's refrigerated.

4. Strain and number of bacteria per serving should be listed on the bottle.

5. Avoid centrifuged or filter-extracted bacteria.

6. Avoid prebiotics.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 8/31/2008 2:30 PM (GMT -6)   
You are reading from Jini Thompson's book - Heal your Gut which I have been reading and it is good. The problem with that list is that it then rules out Primadophilus Reuteri which many people use on the basis that it only has 5 Billion and is in a plastic bottle. VSL~3 which is supposed to be the best is also in a cardboard box with tablets inside.


Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 9/1/2008 9:26 AM (GMT -6)   
Those are general guidelines or suggestions from Jini's extensive research. Of course, you can certainly choose to experiment with formulations outside those guidelines.

Jini actually only recommends Natren probiotics for a variety of reasons: Natren is the gold standard, the Trenev family has many years of historical experience producing the very highest quality probiotics and understand the importance of specific strains, their probiotics are of human origin (not bovine or porcine), have been studied and tested extensively in human trials, etc.

Although I've heard of several members here having good luck with Primadophilus Reuteri, I would want to know what specific strains are involved, because a certain strain of L. reuteri used in many probiotic blends caused some mice to die in testing, leading researchers to recommend "the need to proceed cautiously when using high doses of the strain in neonatal, immunocompromised hosts."

Reference: "Colonization of congenitally immunodeficient mice with probiotic bacteria" by R.T. Wagner, L. Robert, J. Farmer and E. Balish, Infect. Immun. 65:345-3351, 1997.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 9/1/2008 9:41 AM (GMT -6)   
Now that has got me scared about Primadophilus Reuteri big time. Can you tell if Natren do a Probiotic that I can take once a day for IBD? I don't want to do all that 3 different probiotic powders one after another etc.
 
Thanks
 

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 9/1/2008 10:12 AM (GMT -6)   
I have seen Natren's Healthy Trinity - is that OK? It's expensive but worth a punt?

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/1/2008 12:30 PM (GMT -6)   
That doesn't scare me about the primadophilus reuteri of which I've been using every single day for the last 4 yrs straight...with success and many benefits, for example it has guaranteed intestinal release, it aids with lactose intolerance and high cholesterol as well for women, vaginal health, all of which I can vouch for.

I intend to continue with it as I've tried others with less benefit and more expense compared to the primadophilus.

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


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 9/1/2008 1:43 PM (GMT -6)   
I am going to finish off the 3 months of reuteri and then see if I improve. If not then I will try Natren.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/1/2008 3:47 PM (GMT -6)   
Since I'm neither immunocompromised or a neonate, since I'm not a moust, and since the Primadophilus Reuteri has been serving me well for two years, I believe I'll continue taking it myself.

All you can really do is try them until you find one that works for you. I started with VSL#3, the most-publicized (and one of the more expensive) probiotic preparations. Three months and lots of money later, all I had to show for it was increased gas and cramping. In this as in everything else we're all different.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 9/1/2008 8:00 PM (GMT -6)   
It wasn't my intention to "scare" anyone. The point is simply that some formulas and companies have done more studies and trials than others. It pays to do as much research as possible regarding benefits, clinical trials and long-term effects. It's also a good idea to contact the company and inquire about specific strains as that's key to a formula's effectiveness. It is my experience that the cheaper, drugstore brands are not effective.

Natren does make a capsule called Healthy Trinity that contains 30 billion cfu of lactobacillus acidophilus (upper GI), bifidobacterium bifidus (lower GI), and lactobacillus bulgaricus (total GI). Each species is separated from the others within the capsule so they don't compete with each other and lose potency and so they are protected from stomach acid.


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 

Post Edited (princesa) : 9/1/2008 7:03:10 PM (GMT-6)


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/1/2008 11:29 PM (GMT -6)   
Thought I'd throw my two cents in...

Whatever probiotic I'm taking/trying out, I always take more than the recommended dose at regular 6 to 8 hour intervals. This is because I've noticed that a little digestive relief throughout the day helps more than relief just in the morning or evenings. I prefer types with a variety of bacteria, the more the merrier! I've tried keiffir and other probiotic drinks, but my body likes capsules better, probably because I'm semi-lactose intolerant. Cultured dairy products like keiffir, yogurt, and cheese don't hurt me as bad as normal dairy products. I'm not sure if this really makes a difference, but I also try to take my probiotics an hour or two before eating. Gives the bacteria time to migrate to my intestines before the digestive juices start to destroy them is the theory there.

I'm currently taking Florastor, and VSL #3 which I just started a couple of weeks ago. I'm happy to say that it seems to have helped reduce the number, severity, and overall grossness of my BMs. Both are pretty pricey, but I can either feel less crappy and be broke, or save a few a bucks and feel and act crappy. I tried using some cheaper pro-bs, but none of them seemed to do anything.

Good luck in your hunt for a probiotic.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/1/2008 11:41 PM (GMT -6)   
Probiotics can actually aid lactose intolerance granted you take the right strain...the primadophilus reuteri states that it aids with lactose issues, high cholesterol and for women vaginal health.

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/2/2008 4:00 PM (GMT -6)   

I like to take mine after work with dinner, because it can make me bloaty and uncomfortable and I don't want to be that way at work. I think taking with food helps.

I agree, take the strongest, best you can tolerate, why not!

beartooth said...
Thought I'd throw my two cents in...

Whatever probiotic I'm taking/trying out, I always take more than the recommended dose at regular 6 to 8 hour intervals. This is because I've noticed that a little digestive relief throughout the day helps more than relief just in the morning or evenings. I prefer types with a variety of bacteria, the more the merrier! I've tried keiffir and other probiotic drinks, but my body likes capsules better, probably because I'm semi-lactose intolerant. Cultured dairy products like keiffir, yogurt, and cheese don't hurt me as bad as normal dairy products. I'm not sure if this really makes a difference, but I also try to take my probiotics an hour or two before eating. Gives the bacteria time to migrate to my intestines before the digestive juices start to destroy them is the theory there.

I'm currently taking Florastor, and VSL #3 which I just started a couple of weeks ago. I'm happy to say that it seems to have helped reduce the number, severity, and overall grossness of my BMs. Both are pretty pricey, but I can either feel less crappy and be broke, or save a few a bucks and feel and act crappy. I tried using some cheaper pro-bs, but none of them seemed to do anything.

Good luck in your hunt for a probiotic.


49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 9/2/2008 9:58 PM (GMT -6)   
Lucky777 said...
Quite frankly, if someone assured me that drinking a bunny rabbit in a blender once a week would put me into pong term remission, I would do it.
You would not.
=)
 
Gigi - Someone posted a thread here a long time ago about kefir helping them. I haven't tried it, but I've been interested. I have tried kombucha, a different type of drink that also has lots of probiotics in it and I like that a lot.

princesa - Do you know why the author says to avoid prebiotics? I thought prebiotics fed probiotics and were beneficial.


Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa nightly; Canasa weekly; Viactiv; Metamucil wafers; multivitamin

Post Edited (Sara14) : 9/2/2008 9:05:02 PM (GMT-6)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 9/3/2008 3:30 AM (GMT -6)   
Primadophulus gives me stomach cramps - but then it could be any of the other meds I am taking.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


kelleygirl
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/3/2008 5:28 AM (GMT -6)   
Anyone of VSL #3 capsules. How many are you taking during a flare?
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