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Probiotics .. Do they actually help with uc ??

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Posted 12/1/2018 12:21 AM (GMT 0)
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.
Posted 12/1/2018 2:03 AM (GMT 0)
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.
Posted 12/1/2018 2:12 AM (GMT 0)
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.
Posted 12/2/2018 12:32 PM (GMT 0)
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
Posted 12/2/2018 1:39 PM (GMT 0)
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.
Posted 12/3/2018 12:02 AM (GMT 0)
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.
Posted 12/3/2018 6:13 PM (GMT 0)
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.
Posted 12/5/2018 9:40 PM (GMT 0)
What is the best way to take these vsl's ?? With food ?? Or half a sachet first ??
Posted 12/6/2018 2:46 PM (GMT 0)
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.
Posted 12/6/2018 2:54 PM (GMT 0)
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
Posted 12/6/2018 7:27 PM (GMT 0)
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 !!
Posted 12/6/2018 7:52 PM (GMT 0)
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?
Posted 12/6/2018 9:41 PM (GMT 0)
Im confused now i have not got a scooby what to do now ??
Posted 12/6/2018 9:46 PM (GMT 0)
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
Posted 12/9/2018 8:10 PM (GMT 0)
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 ???
Posted 12/10/2018 6:56 AM (GMT 0)
Yes....
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Posted 12/10/2018 4:23 PM (GMT 0)
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.
Posted 12/10/2018 4:36 PM (GMT 0)
https://www.ncbi.nlm.nih.gov/pubmed/27698758

https://www.sciencedirect.com/science/article/pii/S1050464818303723
Posted 12/12/2018 2:34 PM (GMT 0)
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.
Posted 12/21/2018 12:03 AM (GMT 0)
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)

Posted 12/21/2018 3:12 AM (GMT 0)
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: Iā€™m on Entyvio and 50gm of azothioprine (weaning off). I am in very good condition. Best I have ever been.
Posted 12/25/2018 11:48 PM (GMT 0)
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 ??
Posted 12/26/2018 2:54 AM (GMT 0)
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.
Posted 12/26/2018 12:30 PM (GMT 0)
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 ??
Posted 12/26/2018 12:30 PM (GMT 0)
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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