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I got pouchitis shortly after  my takedown. Antibiotics have helped but as I have tried to come off of them it has flared up again. I did another round and am going to try another taper having recovered again but I am not positive that it will work. Tonight I had some blood in my stool even though all the normal symptoms haven't returned. I am also taking VSL#3 (4 capsules a day), Good belly straight shot drink, and oregano oil capsules to try and fight it off. 

I am just really concerned that it will not go away. I am only 6 weeks out, but other than this pouchitis I am doing fairly well. 

Tags: pouchitis

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Well, it depends. Chronic pouchitis is a tough one. Some people get away with intermittant courses of antibiotics. Others need continuous treatment. Mine evolved to needing continuous treatment and I rotated three different antibiotics. Still, my GI was not happy with full time antibiotics and wound up recommending azathioprine (oral) and Remicade infusions. I've been on it for over six months and doing OK and off antibiotics. But, I did get a few other infections that required antibiotics anyway. 

So, we'll see if it is a long term solution for me.

Jan

Jan Dollar

I had pouchitis  right after my takedown  that developed into chronic pouchitis requiring  antibiotics on and off for  a long time ( more on than off).  Although my biopsies still indicate I have chronic  pouchitis, I am able to manage off antibiotics over 90% of the time.  With me, it just seemed over time my pouch somehow has adapted and even w the chronic pouchitis as indicated by biopsy, I am usually symptom free. I will do a quick pulse of antibiotics when symptoms reappear. Also,  in my case, I have a recurrent stricture that is the cause of my pouchitis.  

It may take a bit longer on antibiotics or possibly a few more rounds of the same antibiotic or a different one while your pouch is still adapting to get the pouchitis at bay. Personally I found vsl3  Ds to be a waste of money for preventing  pouchitis.  Cutting  sugar and carbs also helps.  I would not lose hope yet. 

J

Avery, it's much too soon to tell if you'll need antibiotics (or any other treatment) continuously. In any case, for many of us long term antibiotic treatment is no big deal. The trick is finding effective antibiotics without unacceptable side effects.

I was able to delay antibiotics for a couple of years with VSL, but at a much higher dose than you're taking. Perhaps your insurance would cover the prescription-strength VSL #3 DS. 

Good luck!

Scott F

No, bleeding is not required for a diagnosis of pouchitis, and is not a common symptom. It is associated more with cuffitis (inflammation of the rectal cuff) and antibiotics are not the first line treatment for that. Topical mesalamine or hydrocortisone is (in suppository form). If this is a frequent issue, you need to be scoped to get a proper diagnosis.

Jan

Jan Dollar

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