Just had a sigmoidoscopy and like the last one 2 years ago, there was definitely pouchitis and some inflammation "higher up" that led the doctor to think I could possibly also have Chron's (which I had been aware happens to "lucky" j-ouchers sometimes). Since the Cipro and Flagyl have worked whenever I've had the flares, the Chron's has not been definitively diagnosed. 

Was wondering if anyone has had a similar experience, and if a 5-ASA drugs worked in helping you keep in remission from the pouchitis/possible Chron's flares? For the past year I've had the pouchitis become more frequent and more frequent (whereas in years previous since the surgery in 2005 in was pretty infrequent) til now where I have to take the course of antibitoics with a few weeks of getting off the last course. 

Original Post

I followed the same pattern of inflammation being discovered in the ileum just above the J Pouch many years after I got the J Pouch. I have an indeterminate diagnosis and whether it’s Crohn’s or pouchitis does not really matter. What matters is if it responds to treatment or not. Inflammation of the Ileum just above the J Pouch is actually quite common because of backsplash stool into the ileum (the J Pouch has no backsplash valve whereas your colon did) and also because people tend to get strictured at the J Pouch inlet. These factors create a backsplash and inflammation situation above the pouch and an indeterminate diagnosis. 

I had success using long term rotating antibiotics (continuously) and, eventually, Remicade/Methotrexate to treat it and chronic inflammation in the J Pouch.  Inflammation in the ileum can be more resistant to treatment and if so this could be further evidence of Crohn’s.  Your treatment is probably headed in the same direction.  You have to treat the inflammation or it will get worse. Good luck.

5 ASA is Pentasa and it’s unlikely to work alone but try it. It’s typically helpful in combination with antibiotics or biologics but as a stand-alone treatment it’s not likely to resolve the situation.

Last edited by CTBarrister

If the “higher up” inflammation is immediately before the J-pouch then I think it’s more likely to be backwash ileitis than Crohn’s. There’s no valve preventing pouch contents from backing up into the neoterminal ileum, and this can cause some inflammation. If the higher up inflammation is elsewhere in the intestine then Crohn’s becomes much more likely.

You may simply be developing antibiotic-dependent chronic pouchitis, and might require continuous antibiotics now or in the future. If so, it’s best to find several different antibiotics that work for you and rotate between them periodically (perhaps every 10 days or so). I wasn’t able to find multiple antibiotics that worked in my case, but Cipro (and later Cipro + Flagyl) have worked great for me for about 11 years.

Some people have had success with very low carbohydrate diets. You might consider giving that a try, if you can stand it. It includes *all* carbohydrates, though, not just some imaginary list of “bad” ones.

Good luck!

Thanks for the responses. Gonna look into the different antibiotics and rotating them. Gonna also try the pentasa when the doc gets back to me and gives me a prescription hopefully. I have the notion that if the pentasa worked it could be used as a maintenance medicine and would keep me in a remission and not keep having to do the antibiotics.. But sounds like it is  bit of long shot on that working like that.

Pentasa is an extended release form of mesalamine, and might not give you the intended result without a colon. In any case, mesalamine hasn’t been shown to do much for pouchitis.

So just saw the doc on Friday and we've decided to go ahead and try out some of the Chron's meds for the the inflammation that was seen on the last two sigmoidoscopies beyond the j-pouch and in the small intesteine (although the cipro has seemed to manage it). Going with Uceris rectal foam (2mg budesonide) first. The pentasa was gonna cost $175 a month after insurance. The Uceris is expensive but I found this manufactuer discount (the pentasa manufactuer doesnt offer a discount).  I've read conflicting things on whether you are supposed to use it long term or not.. I suppose if the side effects do occur I will not want to stay on it.. When I was on prednisone in high school I had the terrible acne, moonface, mood swings, huge appetite, etc. I'm hoping the budesonide lacks of systemic absorption and taking it in enenma form will limit the side effects. Guess I'll see.

BB,

I used the rectal foam years ago and had no side effects but it was also ineffective. Oral budesonide called Entocort capsules was more effective. In any event I think you are eventually headed towards biologics. That may be your ultimate endgame but hope the foam works for you. Good luck.

Last edited by CTBarrister

I am sorta scared to reply because I have been in this war a long time and it sounds like you are where I was right before I had my colon removed! I was diagnosed with UC and after 10 years, my scopes showed wall to wall polips! No cancer! They told me that keeping my colon after 10 years made my risk for cancer go really high! Last time I got really sick was being highly allergic to Pentasa, so I pleaded for my colon removal! Then I found I had chronic pouchitis! They said "{Opps, we have been wrong and you must have Chrohn's} I have constantly had pouchitis and went from Entyvio to Stelara to Remicade! I have never been blessed with remission nor with anything other but water stools! I wish there was an easy fix all for all of us walking in this daily hell, but few stumble across it! God gives us grace as we look to and trust Him! This gives us empathy for others who live with a life always in the war zone! No place to hide! We just get back up, live thankful, and put one step forward!

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