Vsl

You're probably talking about VSL capsules (rather than packets). It's really guesswork in the beginning, and partly depends on your financial sensitivity.  I'd probably start with something like 8 daily, spaced well away from any antibiotic dose. My current dose of the prescription strength packets (4 daily) is, I believe, equivalent to 32 capsules.

When I had UC, I took 8 capsules a day. (2, four times a day). I took Immodium 4 times a day as well and the two things put the colitis into remission for about a year. That plan was prescribed by a really fabulous GI. I can't remember if he told me specifically to take the 8 capsules but that's what I was taking when I went into remission.

Now I take PB-8, which you can get at Whole Foods. Before VSL3 was available in this country, I had a doctor recommend PB-8 as the closest approximation of it. It's a lot cheaper, which is why I'm using it now. 

RE: Asacol -- I was on it for years but it never really worked. I would ask your doctor to set a timeframe for trying it so that you don't get stuck -- like I did -- taking it forever thinking eventually I'd find the right dose that  would help. Some people find it works great for them and stay on it for a long time. It's a pretty benign drug. 

My understanding (quite possibly flawed) is that Asacol is MR release, meaning it has to remain in the bowel for several hours.  Not sure how you would manage that on a Jpouch.  I remeber when i was ill with UC, they were coming out whole so doc just said dont bother taking them.

Perhaps there is a liquid version or something?  gel cap?

They don't even make Asacol anymore. Lialda is the replacement. It breaks down in the terminal ileum based on the pH there, not transit time.

Jan

oh right so there is a 5-ASA product that isn't based on time release then.   In the UK the replacement for ASACOL is OCTASA (same company, same time release method but apparently lower cost).  I should probably get around to cancelling my prescription lol

Thanks everyone. Scott, my pockets are nowhere near deep enough to handle that kind of dose, these go for close to a dollar for one. I'm currently taking two in the morning and two in the evening, I'm not really sure what to expect, I don't really have any real issues. Just thought it may be wise while on the antibiotics.

Sonflower, it seems hard to believe that something as expensive as VSL can be replaced by something so inexpensive. You know?

Regarding Asacol, I think the Dr thru that out there because he knew I was familiar, sort of like a Skill Saw, which is actually a circular saw, first one made by Skill.

Jan have you heard of taking such a drug for maintenance? I, like many here took it for a few years trying to control things, obviously it didn't work completely back then. My dad on the other hand at 87 was always able to control his Ulcerative Colitis just fine with Asacol.

Thanks Again

Rob

Some of us can get the prescription-only VSL #3 DS (double strength) packets covered by insurance. 

Yes Scott, I knew some were able to get a prescription for this, that's great! My Dr didn't seem to thrilled about writing me one, his reasoning is simple there is no scientific evidence that shows probiotics to be beneficial. Obviously they work for some, you for one, but perhaps not for everyone.

Do you mind me asking who your insurer is?

Your doctor is incorrect.  VSL, at least, has been studied a fair amount and shown to have value. This thread

https://www.j-pouch.org/topic/v...9#534844559045006809

has plenty of details. My insurer is CareFirst Blue Cross. I battled them for a very long time. I must have tired them out, or convinced them, or something, because they've written and adopted a favorable policy covering VSL. Your doctor should read it. It's at:
http://notesnet.carefirst.com/...04EE6AE?OpenDocument

Thank you Scott, this should be quite helpful.

Rob

I wonder if PB8 can improve life with my j-pouch?  Years ago I tried VSL3 and noticed no difference at all while using it. 

If you're looking for a super frugal way to get just as much (and more!) probiotics, I recommend trying your hand at making home made kefir (storebought isn't fermented enough to make a difference). It's super easy to make and you make it just with milk and kefir grains (but online or from a friend). I've found that it has helped me feel much better!

Thank you Mrs. H, I'll give it a shot.

"Natural " sources of probiotics tend to have bacterial strains that are largely killed by the acidity of the stomach. "Manufactured" probiotics tend to select strains more likely to survive the journey to the pouch. Or so I've read.

CareFirst BlueCross has moved the location for their policy statement supporting the coverage of VSL #3 DS in the maintenance of an ileal pouch. It looks like it’s now best approached from this link:

https://provider.carefirst.com.../medical-policy.page

Click on the “Medical Policies” button and search for “Probiotics,” and select the Probiotics document from the list (of two). I think the site really wants you to agree to the disclaimer that sometimes shows up.

Insurance companies aren’t bound by the medical policy statements written by other insurance companies, but such policies can be influential, especially to suggest to a state insurance bureau that an insurance company is being unreasonable.

I take VSL #3 on a prn basis. My gastroenterologist frequently has samples that he generously gives me when i need them. It is terribly expensive, but is the best solution in my experience to calm a cranky j-pouch and get it back to "normal". Don't be afraid to ask for samples!