I rotated antibiotics for 20 plus years, and still do.  I find that it treats the symptoms but not the inflammation.  My inflammation remained mild to moderate for many years, but worsened a year ago.  So starting in November 2015, I was started on Remicade, and now Methotrexate as of a few weeks ago.  The Remicade has made a difference and completely abated the inflammation in the J Pouch within 3 months, based on a scope I had in late February.  However, I still have inflammation above the J Pouch in the neoterminal ileum.  So it seems as though I may be dealing with Crohn's Disease.

I have had the J Pouch since 1992 but inflammation above the J Pouch was only observed starting in 2007 or so.  So it seems that I am dealing with a manifestation of autoimmune disorder that occurred long after my original surgery for UC in 1992.  Because the inflammation is somewhat concentrated directly above the J Pouch inlet, there was a theory that bacterial overgrowth in the J pouch and "backwash stool" into the ileum created this inflammation.  However the inflammation is in irregular swaths, not necessarily consistent with a pure bacterial overgrowth situation.  So your analysis that there could be two causes is correct and may also apply to me.  In my case rotating antibiotics are treating the symptoms (urgency, cramping) while the biologics are treating the inflammation which is being caused to some extent by autoimmune disorder.

Due to the effectiveness of Remicade in abating the pouch inflammation but the persistence of the ileal inflammation, my Remicade dosage was increased from 400 mg to 900 mg.

Actually, pouchitis is seldom due to a bacterial infection. It is felt to be an inflammatory response to the presence of normal gut bacteria. This is why pouchitis is almost exclusive to those with IBD. The reason that antibiotics work is because they reduce the amount of bacteria in the stool, not because they treat an infection. At least that is what I have gleaned from the journal articles I have read.

Jan

I definitely think my latest bout of pouchitis feels more autoimmune than bacterial. The pouchitis was accompanied by arthritic symptoms -- something that I don't recall happening in the past. So, I felt like there was a general inflammatory process going on in my whole body. This is further supported by the fact that the pouchitis did not seem to respond to antibiotics as it has in the past.

While I have had good success taking antibiotics to clear up pouchitis, I also believe that antibiotics that I used to take prior to dental work (for a heart murmur) would bring on a bout of pouchitis. I suspect in those cases I was killing off the good bacteria as opposed to taking antibiotics to kill the bad bacteria. I guess that demonstrates the importance of taking pro-biotics and why VCA#3 seems to be working for some people.

Cheers,

I experienced a similar situation as you.  I had a flu bug about a month ago that ended it in a awful case of Pouchitis (in my case I had all the symptoms).  I tried CIpro (it works sometimes, other ones not) with no luck, then my doctor put me on Flagyl (made me too sick).  Finally after feeling terrible for weeks, the doctor put me on 40 mg, Prednisone (which I know is not a good way to treat Pouchitis, but I was desperate) and I started to feel better, my inflammation reduced substantially.  Now I'm on 15 mg of Pred and still experiencing improvement.  

I'm scheduled for a pouchoscopy in May and hope we will find out what's going on on my JPouch.  Hope don't have chronic Pouchitis, but we will see.

Good luck and feel well to all the poucher's club. 

Laurita

We are successfully treating my chronic, retractable pouchitis with a 2-prong approach-I rotate antibiotics every 2 weeks (Levoquin & Xifaxin) AND I take Immuran to suppress immune response. These antibiotics alone were NOT cutting it, but after being on the 2 prong treatment for over a year I stopped the antibiotics for awhile as I was trying to fight off what I thought was thrush (turns out it wasn't). Lo and behold, pouchitis symptoms started to creep up, so I need both but when on the combo to both lower my overall immune response and reduce presence of the trigger, I am extremely well managed. 

Hello, I haven't been on this forum for quite a while. I have had pouchitis twice since my surgery in 2001.  Perhaps I had it more often but it was subclinical. I think I am having it now.  I have multiple other problems as well. I was diagnosed with CLL - chronic lymphocytic leukemia and SLL -small cell lymphocytic lymphoma which may have to be treated because of a SBO I had recently which may be related to the proliferation of enlarged lymph nodes in my belly. I also have a MAC bacterial infection in my lung which is treated with multiple antibiotics for 12 months. I  am dreading this scenario and I already have PI. I have not taken VSL-3 in a long time and just ordered some. Does anyone have ideas or experience with PI in cases similar to mine? Thanks so much.