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Hi All

Had my colon removed in 1999, pretty much all was ok, had another surgery in 2009 to remove a fistular, all ok as well, my problem is i have had poucitis for the last year or so, its really taking its toll, ive been on Cipro for the last 6 months or so, i cannot do the flagyl, makes me to sick. Still no end in sight for the pouchitis, i had a pouch scope last week and it was confirmed pouchitis, which i knew already, my doctor says stay on Cipro (500 mg twice daily)

Any ideas medicine, diet or anything else, reaching out so maybe some great ideas for me

Thanks

Original Post

Rotate antibiotics (try augmentin, tinidazole, and xifaxin, rotate every 2 weeks), take Pepto Bismol at least 2 hours before or after antibiotic dosages, reduce sugar/carbs in your diet, and try that for a while.  If you are not progressing with antibiotics, biologics is the next level of treatment.  I was on rotating antibiotics to treat pouchitis for over 20 years, and the pouchitis was kept in a "simmering" state.  But eventually it progressed over time, and I had to go on Remicade.  I am doing better on Remicade than I ever was on antibiotics, and I am now off antibiotics completely.  Good luck.

Last edited by CTBarrister

If you have made it since 1999 without major problems, then that should be a good sign.  I got my pouch in 1999 and get pouchitis maybe once a year, sometimes more, sometimes less.  Cipro did not work for me (I only tried it once, so it might work).  My go to is Levaquin and Flagyl.  Levaquin has some known side effects, but all I get is muscle pulls.  I hate Flagyl, but it works.  I've tried the Pepto and the probiotic stuff for pouchitis, but I feel like by now if I have pouchitis, I need antibiotics.  Once it clears up I go back to the probiotics.

Levaquin will get some bad press, but it may be worth trying it.  It has worked for me for 20 years. 

I take Levaquin 500mg once a day and Flagyl 500mg three times a day.  The shortest I've been on these is 7 days, the longest is 30, but I think around 10-14 days is probably good.  Definitely watch your sugar intake to head off pouchitis.  I find stress does not help, or change in routine.  I'm dealing with pouchitis now, probably due to the change in routine due to COVID and all the sugar I have eaten as snacks.

I hope you get better soon.  It may be worth dealing with the Flagyl for a week.  

 

Hello,

Had my J-Pouch surgeries in 2014 and had been on a similar forum for UC years prior to my surgery.  Just joined this site yesterday.  I’m 51 years old and for the most part have been managing well with pouch life for the last 6 years.  However, I think I’m now experiencing Pouchitis and chocked up prior symptoms of it to just some poor food intake on occasion.  This difference that drew me to seek some input from my Dr was the excruciating pain while having a BM and major increase  in BM to the tune of about 20 times yesterday, thought I was back to my old UC days.  Typically 6 to 8 times per day is my routine with the pouch.  Add in some abdominal pain and substantial gas buildup, I felt this was definitely a new experience not to mention major allergies at the moment.  I have been prescribed Ciprofloxacin 500mg / 2x per day.  My biggest concern after readIng many of the posts is the amount and length of time antibiotics are being used.  Taking Lomotil daily as well as Metamucil have been a major part of my routine, not looking forward to adding an antibiotic for extended periods and hope this batch will get me back on track.  I am definitely looking forward to reading more and applying some of the remedies that I others are having some success with.

r/

John

Antibiotic rotation works for me,  Xifaxan, Augmentin and Cipro. Two week rotation. For maintenance, I take one a day. When pouchitis starts flaring, I go up to two a day. I was put on Humira about a year ago as well. It worked wonders until recently.

I hope you find what works. We've go to keep these butts in line.

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