Still sorting things out, but currently being treated as antibiotic dependent pouchitis. Florastor was suggested when I was on cipro plus flagyl. But I read a post here that makes me wonder if I still need florastor to prevent c-diff since I’ve been on Xifaxan only for about a year....and if VSL (or Visbiome) would be a better choice?

VSL cost has always been the deterrent, but I’m revisiting the idea. That said, I’m wondering the thoughts after this week’s court decision regarding VSL. I’ve not seen any articles where the well known clinics and doctors have deviated from VSL in favor of Visbiome. However, the court findings about VSL actually selling a reverse engineered imitation product, not telling consumers this and the original creator saying it’s not as effective as his original formula ...is concerning. The VSL website has been down for days after the court decision.

Does one jump to Visbiome, which is supposed to be the original formula? There seems little information available other than what’s shown on the Visbiome website. 

With a condition that involves trial and error to manage, the thought of taking very expensive magic beans is not okay. 

Any information is greatly appreciated. 

Original Post

Apologies, I see the VSL versus Visbiome topic has been discussed. I often have trouble with my device and the search and post functions here. 

Still left to wonder about it all, especially when GI’s aren’t talking about it. Also still wondering if Florastor has been worthwhile in my case. I asked the office, but they really couldn’t say. It’s all such a guessing game. 🙁

Thanks for surfacing the recent news reaffirming Visbiome’s newest legal success against VSL #3. Either of these bacterial probiotics would be intended to help reduce/prevent/control pouchitis. That’s how I use VSL #3, and I find it a useful supplement to antibiotics (which I’m also on). C diff is chiefly associated with Cipro, so I suspect Florastor’s value is much, much lower if you’re not on Cipro. FWIW, I’ve been on Cipro for over ten years and I’ve never had a hint of C diff, and I generally haven’t bothered with Florastor.

BlueFlame
However, the court findings about VSL actually selling a reverse engineered imitation product, not telling consumers this and the original creator saying it’s not as effective as his original formula ...is concerning. The VSL website has been down for days after the court decision.

It’s more than concerning, as many people were sold what my long time NYC Pouch specialist once called “a very expensive placebo.” I remember him telling me that close to 20 years ago when VSL3 first started being heavily promoted to GI doctors. He was deeply suspicious of its efficacy  as a treatment for pouchitis, at that time, based on his experience with many J Pouch patients who had had their surgery at Mt. Sinai in NYC.  I never really asked him what the grounds for his suspicions were. He was someone who was privy to insider info within the industry and probably had inside info, but I Just implicitly trusted anything he told me anyway so never asked.

The real lesson of the VSL3 scam is to teach all of us to ask questions and never assume that any drug that somehow was allowed on the market by the FDA must necessarily be a good thing. The FDA also allowed OxyContin on the market and it’s probably as addictive as any opiate that has ever been legalized for medicinal use. Remember that  not all doctors take their Hippocractic Oaths as seriously as mine did, and some do not mind being unquestioning shills for the pharmaceutical industry, and willing to unflinchingly promote every dog and pony show new drug they get asked to sample. ASK QUESTIONS about anything new and untested on the market.

CTBarrister posted:
BlueFlame
However, the court findings about VSL actually selling a reverse engineered imitation product, not telling consumers this and the original creator saying it’s not as effective as his original formula ...is concerning. The VSL website has been down for days after the court decision.

It’s more than concerning, as many people were sold what my long time NYC Pouch specialist once called “a very expensive placebo.” I remember him telling me that close to 20 years ago when VSL3 first started being heavily promoted to GI doctors. He was deeply suspicious of its efficacy  as a treatment for pouchitis, at that time, based on his experience with many J Pouch patients who had had their surgery at Mt. Sinai in NYC.  I never really asked him what the grounds for his suspicions were. He was someone who was privy to insider info within the industry and probably had inside info, but I Just implicitly trusted anything he told me anyway so never asked.

The real lesson of the VSL3 scam is to teach all of us to ask questions and never assume that any drug that somehow was allowed on the market by the FDA must necessarily be a good thing. The FDA also allowed OxyContin on the market and it’s probably as addictive as any opiate that has ever been legalized for medicinal use. Remember that  not all doctors take their Hippocractic Oaths as seriously as mine did, and some do not mind being unquestioning shills for the pharmaceutical industry, and willing to unflinchingly promote every dog and pony show new drug they get asked to sample. ASK QUESTIONS about anything new and untested on the market.

Agreed, mostly. A huge problem is there are few answers, partly the nature of the beast. 

 

I had my pouch surgery at Mt. Sinai about 30 years ago....Drs. Greenberg and Hyman. Are you familiar with them?

Scott F posted:

Thanks for surfacing the recent news reaffirming Visbiome’s newest legal success against VSL #3. Either of these bacterial probiotics would be intended to help reduce/prevent/control pouchitis. That’s how I use VSL #3, and I find it a useful supplement to antibiotics (which I’m also on). C diff is chiefly associated with Cipro, so I suspect Florastor’s value is much, much lower if you’re not on Cipro. FWIW, I’ve been on Cipro for over ten years and I’ve never had a hint of C diff, and I generally haven’t bothered with Florastor.

Thanks, Scott. A bit perturbed I’ve been taking Florastor without this understanding.....and really not more than a supposition by the doctor’s office that it likely provides some benefit. I’m fighting a battle here, not looking to waive a feather at it and cross my fingers! Truth is, they just don’t know. And I get that. I just wish we weren’t the ones who are one step ahead because we read and research. 

Blueflame posted:

I had my pouch surgery at Mt. Sinai about 30 years ago....Drs. Greenberg and Hyman. Are you familiar with them?”

I had my surgery done in 1992 by a different group of surgeons- Dr Irwin Gelernt (died in 1996) and Dr. Steven Gorfine, who at this point might be semi retired. That group is now known as Manhattan Surgical Associates and was known under another name in 1992.

Mount Sinai in NYC probably did more J pouches in the 5 years from 1987-1992 than any hospital in the world. They were the only place any GI doc in the northeastern USA would send you at that time. Things have changed and now for example, Yale is very good and they have an excellent colorectal surgeon on staff who I would even trust, by the name of Dr. Reddy. But back in 1992, if you lived in the northeast USA, you took your life into your hands if you didn’t go to Mount Sinai in the minds of many doctors.

MY GI was recommended by the hospital based on his expertise with J Pouches and he ended up being my J Pouch specialist for 17 years after my surgery, until 2009.

You are right that there are few answers to the good questions. 

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