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Reply to "Chronic pouchitis for 16 years"

Hey there Steve, I hope you are feeling better!  Our pouch stories pretty much mirror each other.  I thought I’d throw my two cents in to see if maybe it could help you. How are you doing with the cholestyramine?


I too struggle with chronic pouchitis, the only abx that helps me is metronidazole (or tinidazole) but I prefer metronidazole as luckily, I have little side effects from it and it always works for me (knock on wood!).


I pulse metronidazole one day a week (2000 mg/ 500mg q.i.d).  I used to only take it when things stared flaring but now I just do this one day a week and will stretch to once every two weeks if doing really well. Your doctors suggestion of pulsing 5 days a month might work really well for you!  I then use Allimax Pro (allicin from garlic) 450mg q.d. the rest of the week. Pretty much any anti-SIBO herbal helps me but not enough to knock things down to a low enough level.


I also rinse my pouch with clean water every night with a 100 ml syringe (rinse twice). I swear this helps flush bacteria out but since we are dealing with microscopic bacterial luminal type stuff with immune system wonk thrown on top, a water flush isn’t going to eradicate but it allows me to sleep through the night (I also take 4mg loperamide nightly).

I find great benefit using metronidazole topically IN the pouch (40mg gel compounded q.d. at night after rinsing) which works great. I only do this 2x a week to keep the “bacteria” down and I hope to only use topical eventually. I did have “weird white growths” on the sides my pouch (saw via scope). It was not c diff but probably some sort of yeast overgrowth from using topical too frequently. Taking saccromeyces b. has seems to make them disappear and I’m sure using it less helped that too.


I have tried bile acid sequestrants (cholestyramine). Similarly, psyllium and guggul help too. Although the resin sequestrants work well, I feel they don’t address the root cause, which seems to be the overgrowth of bacteria; "SIBO" of sorts in our pouches. The overgrowth inflames the pouch which prevents the re-absorption of the bile acids in our ileum (pouch) and battery acid butt burn ensues and then the bile acids add to the inflammation, etc…etc…it’s a vicious cycle.


I agree, sequestering the bile acids does help but when I take them I feel like I swallowed a beach ball and I already have enough issue with hindered digestion and not absorbing fat soluble nutrients.  For me, keeping the bacteria down seems to be the better option.  But they might work really well for you!


I see my western-come-functional doc regularly for my IBD (my gastro is pretty useless but I do need scopes) so this is my ad-hoc treatment protocol.  What seems to work for one doesn't always work for another. As all of us with pouches know, this will surely ebb and flow as we live life.

Onward!!! 

Some great reads:
“Interaction of Gut Microbiota with Bile Acid Metabolism and its Influence on Disease States”  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5203956/

(There is mention here of treatment with ursodeoxycholic acid to increase secondary bile acids for prevention of pouchitis but I have not tried this … yet.)

“Topical metronidazole treatment in pouchitis”  https://pubmed.ncbi.nlm.nih.gov/8036463/ 

 

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