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UCsucks
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/6/2009 4:45 PM (GMT -6)   
I see a lot of you are on probiotics. Does it really help? Why do you think my GP or GI doc never mentioned this?
Dx Ulcerative Proctosigmoiditis in 1992

Have tried Asacol (ended up in hospital with pancreatitis), Cortifoam, Salofalk suppositories, Salolfalk enemas (cannot retain).

Flared up for 4 years now


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/6/2009 4:57 PM (GMT -6)   
Most don't mention it, many oddly enough don't believe they even offer any benefit, a good one is Primadophilus Reuteri made by natures way, many use other brands that they have much success with as well.

:)

 

Post Edited By Moderator (Judilyn) : 8/8/2009 12:56:01 PM (GMT-6)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/6/2009 5:04 PM (GMT -6)   
It's really hard for me to know, because I started the 5ASA meds about the same time. However, I do think I got a bit better when I switched from Culturelle to my current probiotic...I was in remission when I switched, but things got just a bit firmer, I guess, despite all of the berries, sweet corn, etc I was eating! At any rate, they aren't that expensive and they certainly don't hurt anything, so I figure they are worth taking.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 8/6/2009 6:15 PM (GMT -6)   
The doctors I've seen have all recommended taking probiotics. Maybe it depends on where you live and how open-minded the doctors are about trying new things other than just the typical lot of asacol, prednisone, imuran....

I think it's worth taking probiotics, and you might need to try a few before you find which one works best for you.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 8/7/2009 5:57 AM (GMT -6)   
Probiotics have not become a standard treatment for UC yet. Some doctors are in the loop with current research, others aren't. Eventually they will all get with the program. Hopefully probiotics will then be regulated and patients won't have to go fishing for answers or be put at risk by unscrupulous vendors.

To your first question, yes, they really help but not all brands are created equal. From my experience, the best ones are refrigerated and are more expensive. Nonrefrigerated brands may or may not be viable depending upon how long they have been on the shelf.

Since they are not regulated, I think the potential exists that some may actually be harmful, so it is a good idea to find brands with a good record that use well established strains. I personally use Natren Healthy Trinity. I would not have a problem with VSL#3, although I have not tried it. Don't know about others.
Diagnosed with UC in 1990.
Current Meds: Sulfasalazine & Folic Acid.
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


SunnyFlorida
Regular Member


Date Joined Mar 2008
Total Posts : 53
   Posted 8/7/2009 10:08 AM (GMT -6)   
I 100% believe in probiotics.  I started on a probiotic about a year ago after having three flares in one year and was sick of taking Prednisone.  My doctor is one of the "old schools" who hasn't come around to the use of probiotics yet.  I have not had one flare since beginning probiotics, and I believe that taking probiotics has been a major contributor to that.  They might not work for everyone, but they certainly work for me.  I take Digestive Advantage (purple box), simply because it doesn't have to be refrigerated. 

~~~~~Teresa~~~~~
 
Diagnosed with UC in 1997
Asacol 400 2 x 3 daily
Half dose Mesalamine liquid 60 ml once daily
Digestive Advantage Probiotic (purple box)
Forvia multi vitamin


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/7/2009 11:29 AM (GMT -6)   
Probiotics are the main factor that helped pull me out of my initial two years of constant flaring after diagnosis. You must use a high quality supplement with the right strains and multiple strains. And I've found the best ones are usually expensive. Many docs are meds and surgery. Period.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/7/2009 3:09 PM (GMT -6)   
I was actually going to start this same thread...kinda.

My surgeon did actually promote the use of probiotics...I couldn't believe it! He himself said something like meds will help the symptoms but the probiotics will help with the healing! Those weren't his exact words but something like that.

I've got the dumb ? though...I live in podunkville...where the heck do you guys buy these probiotics? And are they pills or what?

I'm really wanting to try this out...apparently, according to the dr...and this is a quote...my 'colon is on fire' smhair

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/7/2009 3:17 PM (GMT -6)   
Yup, they're pills. If you have a health food or supplement store, look there. If not, most can be ordered on line!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


calm-on-the-outside
Veteran Member


Date Joined Aug 2009
Total Posts : 832
   Posted 8/7/2009 3:22 PM (GMT -6)   
Oh, ok, so like Whole Foods?

husbandhascrohns
Regular Member


Date Joined Aug 2009
Total Posts : 20
   Posted 8/7/2009 3:25 PM (GMT -6)   
princesa: what probiotic do you use?

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16036
   Posted 8/7/2009 8:28 PM (GMT -6)   
I am always taking different probiotics. I try to eat a lot of yogurt too. I was on the SCD diet for a while and I still make the yogurt and sweeten it with honey and flavor it with vanilla extract. I also drink kombucha tea and eat fermented foods because they are loaded with probiotics. I think it helps - when I stop taking probiotics I notice an increase in symptoms. Usually if I miss a few days I will load up on the kombucha and it sets me back to normal. I order probiotics online, they are half the price they cost in stores. I buy teas and things from whole foods. It's expensive but what can you do...
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

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