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.

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.

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!

I still follow this forum but don't post much.  Resurrecting this old thread from the dead I had started.   For the last couple years, my journey has continued with chronic pouchitis. I've had to continue using cipro and now also flagyl to keep the pouchitis at bay, with my pouchitis still indeterminately possibly having Chron's mixed in as well. To CTbarrister' s point from a while back the most important things is controlling the inflammation whatever it is. I never did the antibiotic rotation thing yet, as I kinda preferrred the Cipro but now it seems that Flagyl is the most effective as this last week I've felt the best in awhile after flaring a little bit even while on the Cipro, so switching to flagyl per doc's recommendation.  I tried humira for a year, then Stelara, and I'm about to switch from that and give Skyrizi the next try. Humira and Stelara were just not able to keep me from needing the antibiotics on a perpetual basis. On the good side the Humira and Stelara have gotten rid of my psoriasis, which is why I am preferring to try Skyrizi over something like entyvio which probably wouldn't be effective for that. The Uceris foam did not do much for me before starting the biologics in 2020.  Nothing so far has exacerbated the PSC that I have also which thankfully has been asymptomatic (the liver being a consideration when electing to try new drugs). So next adventure is giving Skyrizi the try. Thankfully the new doctor is amenable to me trying this new route.

Let us know how the Skyrizi goes. I think a few other posters are taking it and it's the latest rage, and it's marketed as aggressively or more so than Humira. I am rather fortunate that since starting Remicade 9 years ago, my pouch has been maintained rather well, with my persistent issue being at the J Pouch inlet and in the neoterminal ileum above it. I also fall into the "indeterminate Crohn's category", and have for the last 18 years since they first notice inflammation in my neoterminal ileum. But it's likely the result of backsplash stool, and that's why it's indeterminate in almost every case of a J Pouch where inflammation develops in the ileum after surgery. They just don't know and never will, in just about all cases, so it's utterly pointless to worry about, especially if treatment is working. In my case I do believe, based on how my J Pouch responded to Remicade, that it's almost certain my problems are due to backsplash stool and pooling of stool above the inlet. The empirical evidence is that Remicade cleared up the pouch inflammation but merely keeps the inlet and neoterminal ileum inflammation in check.

Thanks for the feedback. I'm interested in knowing more about where my doctor saw the inflammation from my sigmoidscopy they did few days ago after hearing the level of detail you know about yours. I'll have to ask the doctor where he saw the ulcerations he found confirming inflammation, if it was in the neoterminal ileum or somewhere else besides the pouch. Feel good about Skyrizi as the next treatment regardless. Hope that I can start that soon, though they told me to take my last Stelara dose coming up while they get the pre-approvals, and that is an every 8 week drug, so seems like it could be awhile if you have to get the one out of your system before trying another.

I had a similar inflammation pattern with little inflammation in the pouch and some more in the neoterminal ileum, up to 40 cm, getting weaker upward.

After trying some biologicals which did not help, my GI doc agreed to prescribe me antibiotics and so i took Flagyl and Cipro over three years, reducing the dose so that the effect was still sufficient. My inflammation was much better, only some cm above the pouch left.

As my doctors were not feeling comfortable with my chronic antibiotics use, they recommended that new med Skyrizi, which I started last December. I was asked to stop antibiotics at once and have a prednisone treatment till the new med would take effect, tapering the dose over three months.

While the first three Skyrizi treatments were infusions in 4 week intervals, now I have to use an applicator (a kind of motor driven pen, releasing the sc. fluid over several minutes) only every 8 weeks. I am feeling ok, even a little more stable than before with antibiotics. A pouchoscopy will probably be done end of the year.

Glad you have had success so far with Skyrizi ,and it's good effects have lasted even as it sounds you have tapered off the prednisone.   I feel good about it being my next try for getting off antibiotics. Right now I just finished the 2 week course of Flagyl and it has got me feeling normal, best in awhile, since finishing the course a few days ago.  I had used it before in tandem with Cipro and honestly thought that it wasn't as potent as the Cipro, and so was using Cipro solely as a maintenance while trying the different biologics. Interesting hearing they they had you do the Prednisone while starting the Skyrizi.  Makes sense.

Yes, that initial course of prednisone really made sense. I was also recovering from a Covid infection and needed some additional weight.

I hope that Skyrizi will help you too.

I had my first infusion of skyrizi yesterday. Hoping this one works better than the humira and stelara.

I just finished my third loading dose. I was much happier on Entyvio. 10 years till it just stopped working.