Probiotics .. Do they actually help with uc ??

I notice that on alot of your posts where your regime of meds and other potions are mentioned most of you take probiotics , am i missing out on something beneficial for my uc ?? Is it a personal thing or are we all missing a trick and if so what ones should i get ? Tablets or drinks ??

Probiotics are tricky as even VSL, an expensive probiotic with a known high response rate in UC may either make things better, fully induce remission, do nothing or in some cases make things worse. I am a bit biased as probiotics don't agree with me but I also think it's impossible at this point to fully understand the full impact of probiotics on the full range of factors at play. I don't like so many incalculables. I'm also looking into indirect modification of the microbiome via change of the environmental factors such as hormones and motility and such. VSL does have a high response rate though, as high as 77% in some studies. I think they are worth looking into especially some of the high response ones but I would bare in mind they don't work for everyone. It would be much nicer if FMT was easier to get a hold of.

If you ask people on forums such as this, you'll get lots of people saying that probiotics help with UC. There are lots of anecdotes.

But the research studies to date have shown very little if any benefit of probiotics in treating UC. The evidence to support their use is quite weak. And some people do have adverse reactions to them.

Very little of the live probiotics make it to the colon, and those that do are totally outnumbered by what's already there. It's really difficult for orally administered probiotics to alter one's microbiome in the colon.

Administration via fecal transplant is much more effective at getting the probiotics where they are needed and where they can actually alter the dysbiosis.

There is lots of activity in finding better ways to test people for what strains would help them, and then finding ways to administer those strains effectively. Right now, it's a crapshoot (haha).

I spoke with my Gi and they have recommended that they do advice a general probiotic drink but with caution they stated that when considering to take into account that the number of live bacteria is at the time of manufacture and not sat on a shelf in a shop...
They have recommended. VSL#3 or yakult.....
but has warned that there is always a risk of upsetting the gi tract , so im 50/50 on this now !!!
What happens if i upset the gi tract ???

There's many things you can give a fair try, that is use them for a month and see if you improve, discontinue and see if you regress. However, there's no one-size-fits-all for UC, as everyone responds wildly differently to various possible treatments. One's miracle does absolutely nothing for another, and might even make another's symptoms a whole lot worse. You can try and see. Just never take something because "the majority of UC patients take it" as you could be wasting money, see no benefit, etc etc. Everything must be tried and vetted, and either discontinued or kept based on your results.

Yes, probiotics are poorly studied. We know our bacterium makeup is pretty wacky with UC, but it is also possible that eating a diverse variety of healthy foods will balance that out over time. Stuff like eating prebiotics, food that encourages healthy bacterium development and success might show promise. Stuff like kifir, and other fermented foods can have good bacteria in them.

No absolute rights or wrongs. But we do have a lifetime to try lots of things, vet them, and see what works for us!

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Moderator Ulcerative Colitis
John, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa
Wow you look great, did you loose weight? Yeah, I lost 20 pounds in a month through this great new program called IBD, you should try it! I wasn't hungry, all I had to do was be doubled-over in pain with frequent diarrhea!

If you go with VSL#3 ask for the packets. You can ease into it by using a portion of the recommended dose to see how it goes. I take it and find it soothes my gut to a degree. No miracle but seems to help some. It's expensive.

I’ve been taking VSL3 for 8 years and found out about it on here. It has became a regime and coincided with me having more control and good health since I started it.

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Mild Chrohns Colitis since 2007
VSL#3, 4.5g Pentasa.

I take with my evening meal - 1 sachet, or 2 if I feel a little unwell.

I take probiotics (VSL#3) and feel they help me. But there is no scientific consensus they help much at all.

A few years ago researchers discovered that there are three distinct types of gut biomes people have, and you don't necessarily have the same one your parents have. My personal nonscientific conclusion from this fact is that any particular probiotic may not help everyone, and might only be helpful for 1/3 of people at best. So, if one probiotic doesn't help you, try another.

https://www.nytimes.com/2011/04/21/science/21gut.html

Didn't help me either...

Well im gonna give it a shot , like you say nssg the worst it can do is flush £65.00 literally down the toilet ,,
I had my 4 week infliximab earlier and feel battered from it ,so want to try all available options to help me never ever ever ever having to go back to hospital with such a close call of surgery again , scared the 💩 out of me 🙈🙉🙊 , also give me any suggestions for anything you lot have tried and thought worked please ..

Sam1996 said...
I've heard VSL3 is the only one clinically proven to help (and anecdotally I feel like they help me)...VSL3 DS is a prescription drug so it is sometimes covered. I know United healthcare covers it, but bluecross blue sheild doesn't. Just some personal experience..

VSL#3 has been shown to help with pouchitis (in some smaller studies). It hasn't been shown to help with UC, as far as I know.

beave said...

Sam1996 said...
I've heard VSL3 is the only one clinically proven to help (and anecdotally I feel like they help me)...VSL3 DS is a prescription drug so it is sometimes covered. I know United healthcare covers it, but bluecross blue sheild doesn't. Just some personal experience..

VSL#3 has been shown to help with pouchitis (in some smaller studies). It hasn't been shown to help with UC, as far as I know.

Here's my source https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180711/. The abstract talked about pouchitis as well, so maybe it was a mixed study. But the results only discussed standard UC. Many articles about it. Also worth noting that not everyone had the same benefit (as expected from any medication.)

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, CI95% 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, CI95% 0.51–0.74; ITT P=0.046, CI95% 0.47–0.69) and in rectal bleeding (PP P=0.014, CI95% 0.46–0.70; ITT P=0.036, CI95% 0.41–0.65), whereas stool frequency (PP P=0.202, CI95% 0.39–0.63; ITT P=0.229, CI95% 0.35–0.57), physician's rate of disease activity (PP P=0.088, CI95% 0.34–0.58; ITT P=0.168, CI95% 0.31–0.53), and endoscopic scores (PP P=0.086, CI95% 0.74–0.92; ITT P=0.366, CI95% 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, CI95% 0.36–0.60; ITT P=0.132, CI95% 0.33–0.56). Eight patients on VSL#3 (11.2%) and nine patients on placebo (12.3%) reported mild side effects.