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Probiotics .. Do they actually help with uc ??

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Probiotics .. Do they actually help with uc ??  
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beave
Veteran Member
Joined : Mar 2007
Posts : 1960
Posted 11/30/2018 5:21 PM (GMT -7)
I guess I should have said that there is only very weak data to support VSL#3 use for treatment of UC, not that there is no data at all.

That's a small study, too small by far, and too short in duration. It was also paid for by the manufacturer. What's more, as your summary says, "physician's rate of disease activity... and endoscopic scores...did not show statistical differences." But it did appear to help symptoms.

I have no problem with people trying it - I tried it myself many years ago.
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Uniform Charlie
Veteran Member
Joined : Jul 2015
Posts : 844
Posted 11/30/2018 7:03 PM (GMT -7)
There is a fairly large collection of smaller studies showing vsl 3 to be effective in treating active UC. It has also been shown to be nearly as effective as 5 ASA in maintaining remission. A Google search will turn up several pages of research.
Diagnosed Proctosigmoiditis (UC) 2015
Hiatial Hernia w/ GERD
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, VSL3 occasionally, One a Day Multi-Vitamin, Curcumin occasionally
Did SCD for about 2 years but lost willpower
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beave
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Joined : Mar 2007
Posts : 1960
Posted 11/30/2018 7:12 PM (GMT -7)
No doubt you can find some small, underpowered studies that show benefit.

You just can't find large, multi-center studies that show statistically strong benefit.

Because if you *could* find such studies, you'd also find the manufacturer asking the FDA for approval of VSL#3 as a first-line treatment for UC. It's telling that that isn't the case.
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/2/2018 5:32 AM (GMT -7)
Wow seems like a lot of mixed opinions , i think you all have a point one way or another , i think the main thing is to give it a go and see for myself , maybe i might be one of the lucky ones šŸ˜Ž
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Uniform Charlie
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Joined : Jul 2015
Posts : 844
Posted 12/2/2018 6:39 AM (GMT -7)
Interesting point, beave. Is it even possible for the FDA to approve a "medical food" as a first line treatment? Or any probiotic for that matter? I know nothing about it.
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beave
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Joined : Mar 2007
Posts : 1960
Posted 12/2/2018 5:02 PM (GMT -7)
That's a good question. Several of the probiotics strains are either patented or copyrighted. There's plenty of legal dispute about the rights to patent or copyright a strain of bacteria, and I have no idea of the details.

I do know that there are (or have been?) trials to get a couple of 'food supplements' or 'medical foods' tested and approved for mild IBD. And there's nothing special about them - just a certain dosage of something found naturally in lots of food, e.g., an amino acid supplement. So that makes me think that it's possible to get probiotics approved as a treatment as well, provided of course the data supports it.

Fecal matter transplants are FDA approved for some c.diff treatments, if I remember correctly.
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eekseel
Regular Member
Joined : Apr 2017
Posts : 118
Posted 12/3/2018 11:13 AM (GMT -7)
My experience with probiotics, either strong ones like VSL3 or any other probiotic, is that it's compensating for the incredibly poor environment of our gut, yet doesn't address the underlying problem. It's the equivalent of putting brand new goldfish in a tank with toxic water. They'll live for a while, but will die off because the environment is so hostile and doesn't allow them to breed on their own, so we keep having to dump more live fish in.
Diagnosed UC 2009 - Moderate Pancolitis since 2015.
April 2017 stopped Lialda after 5 years, in remission after 6 months Qing Dai (3grams daily) + 60mg sulforaphane (140g brocolli sprouts, juiced) + good multivitamin, fish oil, CBD oil, cardio and other odds and ends.

You can only lead a horse to water...
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/5/2018 2:40 PM (GMT -7)
What is the best way to take these vsl's ?? With food ?? Or half a sachet first ??
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Uniform Charlie
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Joined : Jul 2015
Posts : 844
Posted 12/6/2018 7:46 AM (GMT -7)
Mixing with something thick like yogurt or applesauce is best. I am used to it so I just stir it in with juice. Grape juice or orange juice works well because they are very sweet. Start with a very small amount. Maybe 1/4 packet. Work your way up to the recommended dose from there. There is usually a guide included.
Diagnosed Proctosigmoiditis (UC) 2015
Hiatial Hernia w/ GERD
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, VSL3 occasionally, One a Day Multi-Vitamin, Curcumin occasionally
Did SCD for about 2 years but lost willpower
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Uniform Charlie
Veteran Member
Joined : Jul 2015
Posts : 844
Posted 12/6/2018 7:54 AM (GMT -7)
Robert, check out the latest post from pouchninja. Apparently the current formulation of vsl 3 is a knock-off of the original.

https://www.healingwell.com/community/default.aspx?f=38&m=3582903&p=1
Diagnosed Proctosigmoiditis (UC) 2015
Hiatial Hernia w/ GERD
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, VSL3 occasionally, One a Day Multi-Vitamin, Curcumin occasionally
Did SCD for about 2 years but lost willpower
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/6/2018 12:27 PM (GMT -7)
Im a bit confused , have i brought a load of crap then ??? Do i not take this ,and get the other one ??? I dont want to be taking Jekyll gear !!
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beatUC
Veteran Member
Joined : Mar 2010
Posts : 1464
Posted 12/6/2018 12:52 PM (GMT -7)
Just drink kefir, it's $2 a quart, loaded w/ probiotics, 99% lactose free. Why take a big pharma expensive knockoff when you have an inexpensive tried & true all natural alternative?
Imuran
Asacol
Rowasa
prednisone as needed
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/6/2018 2:41 PM (GMT -7)
Im confused now i have not got a scooby what to do now ??
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14330
Posted 12/6/2018 2:46 PM (GMT -7)
If you bought them then use them. Nobody is saying you shouldn't.

There are no absolute right and wrong answers with UC, as everyone responds so very differently to virtually everything. Lots of us have different experiences and different advice accordingly (which is why some of us contradict each other). In the end, you must choose your own path smile
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Hmmm call a plumber or an exorcist? UC is responsible for some truly terrifying things...
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/9/2018 1:10 PM (GMT -7)
I missed the delivery of my vsl on weds and never got to pick it up until friday and it went straight into the fridge so its been out of the fridge for 56 hrs , is it still use able ???
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quincy
Elite Member
Joined : May 2003
Posts : 31469
Posted 12/9/2018 11:56 PM (GMT -7)
Yes....
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symtomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
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owleyes
Regular Member
Joined : Mar 2017
Posts : 52
Posted 12/10/2018 9:23 AM (GMT -7)
Bacillus soil bacteria, and soil based organisms help me a lot.
There is some research about it, from 2014, I believe. It says that this type of bacteria stays in gut and colonize much better. Also, has healing properties. If I find it, I will share. Anyway, I do use probiotics, only at the night time before going to bed; I have found it very helpful.
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owleyes
Regular Member
Joined : Mar 2017
Posts : 52
Posted 12/10/2018 9:36 AM (GMT -7)
https://www.ncbi.nlm.nih.gov/pubmed/27698758

https://www.sciencedirect.com/science/article/pii/S1050464818303723
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WorriedUCer
Regular Member
Joined : Jul 2014
Posts : 362
Posted 12/12/2018 7:34 AM (GMT -7)
Probiotics have been a godsend for me. I am intolerant of imuran (uncontrollable vomiting to the point I have to be hospitalized) which rules out that class of drug and prednisone gives me the most terrible bladder pain (I have interstitial cystitis). So that has left me with VSL#3 to manage my flares and for the most part it does. But my UC has always been responsive to probiotics and responded well to fecal transplant.
Mild-Mod UC - diagnosed 1995; antiphospholipid syndrome - diagnosed 2014; painful bladder - diagnosed 2003
Meds: Mezavant ; enoxaparin
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/20/2018 5:03 PM (GMT -7)
I still have not taken my vsl its been sitting in the fridge for the last coupla weeks as im having serious reactions to my azaphioprine , i had to come of them for 5 days as when i was taking them before bed i was waking up at silly o clock in the morning with projectile vomit for an hour or 2 !!!! ;then the daft gp said maybe i should try just one 50mg tablet before bed and like a wally i agreed , and spent most of the early hours vommiting heavily and now have a burnt out throat and bruising on my core ..... My stomach aint a happy puppy at the moment , i feel nauseous. 24/7 ...
So the question is .. Should i get a sachet of this vsl gear in me lively to help sort out my tummy ????

Post Edited (R85ERT) : 12/20/2018 5:23:03 PM (GMT-7)

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gmark7
Regular Member
Joined : Mar 2016
Posts : 22
Posted 12/20/2018 8:12 PM (GMT -7)
Check out Pro 50 by Vitamin Bounty I believe it is. They are actually very beneficial: they help with digestion and stool and bloating. Probiotics can either work or not. It really depend on the person. But in the end, all of us need better gut bacteria. Just depends on how much and which ones.

Merry Christmas and hopefor the best: I’m on Entyvio and 50gm of azothioprine (weaning off). I am in very good condition. Best I have ever been.
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/25/2018 4:48 PM (GMT -7)
How will i know if the probiotics are good for me ??? Or not ??? What reactions if there good and what bad reactions if there bad ??
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 14330
Posted 12/25/2018 7:54 PM (GMT -7)
Ideally your uc symptoms improve that'd be a good sign. Increased gas and bloating are the only bad side effects I've heard of. Like most things uc, give it a fair chance of about 1-month and assess your progress or lack thereof. Should be at least some signs of progress by then.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

If you fart really loudly in public, just yell "jet-power" and walk faster
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/26/2018 5:30 AM (GMT -7)
I have no symptoms anymore at all just sick when i take aza.... I was hopind by taking probiotics it would just help making remission stay longer and stronger ?? Or should i not take them full stop as there is no flares or symptoms as i might risk messing my tract up ??
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R85ERT
Regular Member
Joined : Oct 2018
Posts : 57
Posted 12/26/2018 5:30 AM (GMT -7)
I have no symptoms anymore at all just sick when i take aza.... I was hopind by taking probiotics it would just help making remission stay longer and stronger ?? Or should i not take them full stop as there is no flares or symptoms as i might risk messing my tract up ??
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