I had chronic moderate inflammation up to 30 or 40 cm for 16 years after takedown. The pouch was less inflammed than the terminal ileum. It was always diagnosed as colitis-like. Nothing really helped against that chronic inflammation except antibiotics (Cipro & Flagyl).

For the last 3 years I have taken antibiotics chronically. Inflammation has reduced largely to some cm pre-pouch.

I don't think you need to worry about losing the pouch. There are means to treat inflammation. Did you already have an MRI scan with fluid to check for strictures? It is a little unusual that there is local inflammation at the former stoma site, perhaps there is a narrowing or scar tissue there? Did the pouchoscopy report say something about that?

@SteveG posted:

I had chronic moderate inflammation up to 30 or 40 cm for 16 years after takedown. The pouch was less inflammed than the terminal ileum. It was always diagnosed as colitis-like. Nothing really helped against that chronic inflammation except antibiotics (Cipro & Flagyl).

For the last 3 years I have taken antibiotics chronically. Inflammation has reduced largely to some cm pre-pouch.

I don't think you need to worry about losing the pouch. There are means to treat inflammation. Did you already have an MRI scan with fluid to check for strictures? It is a little unusual that there is local inflammation at the former stoma site, perhaps there is a narrowing or scar tissue there? Did the pouchoscopy report say something about that?

Thanks for sharing, Steve. It's so helpful to hear about your experience as it provides some much needed perspective.

I asked my doctor why we weren't starting with antibiotics and she said that she thought the steroid would help more with some of the inflammation above the pouch. I am still interested in at least trying antibiotics before I consider stronger immune suppressing meds.

During the pouchoscopy they were on the lookout for any narrowing at the former stoma site as that is where I had previously had some obstruction pain and just found the ulcer and inflammation - no obvious narrowing or scare tissue.

@mrwolf88 posted:

Hi all - I just had my first pouchoscopy 8 months after takedown and was surprised and disappointed to find mild inflammation both in and above my pouch.

In addition to the pouch being inflamed, an ulcer was found at my prior ileostomy site along with inflammation running 5-10cm in that part of the terminal ileum. The 5-10cm of the pouch inlet between this spot and the pouch were in the clear. The fact that there was inflammation happening above the pouch seemed to indicate this was "autoimmune" in nature and not run-of-the-mill pouchitis. Pathology showed "mild active nonspecific" inflammation for the inflamed parts.

I've been put on a trial on budesonide to see how I fare, though to be honest I've hardly had any noticeable symptoms besides some very vague abdominal pain. I've had a couple of suspected partial obstructions the past few months, so I am also curious if this inflammation could be a contributing cause.

I've only been able to speak to my doctor briefly and am awaiting a follow-up, but needless to say I'm terrified that this is going to end up leading to a rediagnosis of Crohn's disease and ultimately pouch failure. I had UC for 14 years prior to my surgery and it always consistently presented as UC.

Any thoughts or advice any of you might have is very much appreciated as I try to navigate these possibilities. I'd especially love to hear from anyone that has had similar pouchoscopy results.

Thank you!

These findings are very common and virtually the same as mine (like Steve I am less inflamed in the pouch than in the neoterminal ileum and inlet), although usually not so soon after takedown. Usually more like 10 years or more. And throwing a Crohn's label on it really doesn't help matters, because the labels no longer matter. It's inflammation of the bowel, it has to be treated, and either you will respond to the treatment or not. And guess what? All the treatments are the same regardless of what you call the inflammation in your inlet and neoterminal ileum. So what you call it is totally irrelevant.

I have had inflammation above my J Pouch for over 16 years and I have treated it. It's not capable of being definitively diagnosed and not worth further efforts to do so. It's inflammation. Frankly, it's most likely due to backsplash stool, which is why it sometimes develops many years after takedown and is quite common in older Pouches. The Pouch, unlike the colon, has no backsplash valve, so that when the pouch is emptied, it doesn't all go down. Some goes up and back into the neoterminal ileum, hence the term "backsplash stool." This is an anatomical fact that everyone should know about their pouches. Hence the J Pouch inlet is and has been a problem area for many years, for me and many others. This is due to stool pooling and resultant bacterial overgrowth in this area.

Your "terror" of a rediagnosis of Crohn's is one you should shelve immediately, because all diagnostic testing is notoriously unreliable and you shouldn't spend a penny on it- you would be better off flushing thousands of dollars down the toilet than wasting your time on these procedures, which accomplish nothing. Focus your time and money on proper treatment. You have inflammation in the same areas I do and your concern should be treating it, and if you treat it you can then call it treatable Crohn's, or treatable X disease or whatever other pet name you would like. Which would be better than untreatable pouchitis, right?

Budesonide should help, but it's probably not a great strategy long term. My treatment has been biologics, occasional antibiotics when I flare, and occasional budesonide when I have really flared, which hasn't happened too much. I have largely been under control the past 10 years. It's possible you can manage it with chronic antibiotics, but you will need to scope annually to make sure that's keeping things at a baseline. In my case antibiotics alone worked for around 20 years, but the last 8 years I needed biologics, sometimes supplemented with antibiotics and budesonide as noted above.

You will also need to watch your sugar intake and use fiber supplements judiciously. In a situation where you are pooling at the inlet, high sugar intakes will only fuel SIBO.

If you are lucky, inflammation is not yet chronic and you can get rid of it with budesonide or antibiotics.

I started with budesonide 10 years ago. It calms down inflammation a bit, but it can not heal my chronic pouchitis / ileitis. Nevertheless I am using it since then at a reduced dose, at the moment only half a capsule of Entocort (1.5 mg) before dinner. If I try to stop it, I feel inflammation (cufftitis I guess) after about 3 days.