Is it ok to not treat pouchitis?

I would keep going with what you're doing but I think you are pushing your luck a bit with the diet.  And you should know and I presume you do that you don't feel the consequences of such a diet immediately over the short term but rather over the long term as the bacterial counts change.  And you are now taking nada to counteract the bad bacterial counts that are building up and backwashing into your ileum over time.

In the past when I went off antibiotics there was a steady deterioration to intolerable and not something I could "push through".  It may be that your baseline pouchitis isn't all that bad and need only be treated sporadically with antibiotics.

I have chronic pouchitis and do what you are doing often (have gone on and off antibiotics for the last four years)). Last round I lasted several months with an occasional cipro here and there if I was starting to feel pouchitis acting up. I got hit really, really bad over the last few weeks and it has now taken a bit longer to get the pouchitis tamed down (and still not fully under control) since restarting meds. I personally hate cipro and being on it chronically (severe muscle aches and joint pain), but nasty pouchitis where you are running to the bathroom every hour with severe cramps and feeling like your bottom is going to drop out of you is so much worse. I would be cautious and would definitely resume the antibiotics at the first hint of things turning south. Dr. Bo Shen has indicated untreated pouchitis can cause a stiff pouch.

clz, I'm delighted that your pouchitis symptoms went away. Presumably your bacterial balance was able to restore itself after the antibiotics were stopped for long enough. I don't don't think most GIs would advocate treating asymptomatic, mild, "scope-only" pouchitis with antibiotics. I have mixed feelings about CT's dire warnings, too. While some people do much better on a low carb diet, it sounds like you're lucky enough to do fine on a more liberal (more enjoyable) diet. 

You might want to try VSL #3 DS as a way to reduce any simmering pouchitis (or possible flares). Its best use is to prevent pouchitis flares. It's expensive, though, if your insurance won't cover it. 

CLZ,

You can fight your insurance company to cover the  VSL. I did and my husband's company now covers it less my deductible.

I also got my insurance company to cover it, but it took a year and several appeals through my state insurance regulators.

I think it is fine to treat based on symptoms, particularly since you say it is only mild pouchitis. ALL pouches have some minor level of inflammation, so I would not get too worked up about it. Sure, try to limit your carb intake the best you can, but don't beat yourself up about it. We are all individuals with individual tolerances. 

That said, knowing your past struggles with chronic pouchitis, I would hope you'd be alert to pouchitis creeping back into a more active state, and try to at least limit sugars if that were the case. 

But, how wonderful that your function has improved so well! 

Jan

I've been on antibiotics all this year as my pouch was so inflamed they needed to do a balloon dilation February 9th. I then changed what I was doing and stopped taking VSL#3DS twice daily while taking antibiotics.  I had it all spaced out so I took it 3-4 hours in-between antibiotic doses.  They also changed my antibiotics and I dropped Flagyl and started taking Xifaxin.  It's very expensive at $1,056 for a 30 day supply of 60! Good thing I past my deductible for the year after just paying that full price once.  I alternate it with Augmentin as I can't take Cipro.  Cipro caused c.diff when I still had my colon and I've had c.diff with my j-pouch. Flagyl was making my periferal neuropathy worse plus was generally nasty for me.  I think the thousand dollar antibiotic is probably worth the cost. In hindsight I probably didn't take antibiotics like I should have as I hated Flagyl.

I'm just finishing a week of no antibiotics and have taken 3-4 doses of VSL#3DS daily during the break. I am still eating most of my meals as protein/fruit/veggie smoothies once to twice a day.  I can tell the pouch doesn't need dilating again now but a few weeks ago I almost emailed Mayo again.  I've been giving myself mini enemas by using a function of my bidet's that sprays water into my j-pouch.  I been afraid of going anywhere overnight and away from my bidet.  The last time I did so I had to send my husband to buy me some fleets enemas.  

I'm like you and wondering if I should stay off the antibiotics and just stay on the VSL#3DS longer.  I got into trouble, as my j-pouch got too inflamed and needed dilating, because I wasn't using antibiotics most of the time.  After reading everyone's advice above, I will go back to the rotation of 2 weeks Xifaxin and 2 weeks Augmentin and squeeze in a week of heavy VSL#3DS here and there.

Prior to the dilation I'd been taking VSL#3DS with my antibiotics.  I think it wasn't working as my pouchitis was getting worse. One of the NP's at Mayo suggested I quit taking it when on the antibiotics.  I have been taking s.boulardii twice a day to keep c.diff away. I will do that forever as I have not had a recurrence of c.diff since starting it.  I eat Greek yogurt, that has a bit of probiotics in it, several times a day while on antibiotics too.

I  understand why you are considering staying off of them.  My GI at Mayo's told me I didn't need to come back for a pouchoscopy for 2-3 years after the one I had in July.  I was back there 6-7 months later having one including the dilation.  No fun....

Good Luck!