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I had my pouch scope and I was told “I have severe inflammation of the pouch and some inflammation above the pouch.” For some context I was told a year and few months ago I had inflammation of pouch and above the pouch. I have done a lot of antibiotic and tried diet and honestlY have felt better. I just had a scope done this morning and I went into it optimistic because I have felt better. Well after the doctor came in and said I have severe inflammation of the pouch and some inflammation above the pouch. Has anyone had this happen to them because I feel hopeless at this point.  I should say, I don’t mind having a bag, I really don’t. That isn’t my concern. My concern is more inflammation above pouch. Has anyone had this scenario happen to them and what were they diagnosed with? Could inflammation above pouch be because my pouch is severely inflamed? Is it actually crohns? Crohn’s disease of the pouch? I’m just concerned about my longevity life wise to be honest as I have a young daughter.  I was on entyvio the past year and guess that did not help. I have been on a lot of meds in the past before my jpouch surgeries and nothing ever helped so I’m worried nothing will help me.

Some experiences, thoughts, anything is helpful as I feel very hopeless right now.

thank you.

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That inflammation above the pouch is caused by stool jamming back there, allowing bacteria to spread and pressure to build up when the stool can't be pushed forward any more.

If the mucosal barrier is weakened, then 'unwanted' stuff can pass through. Our body reacts with an increased immune reaction (inflammation), which also increases the bowels wall thickness in the long term at that place.

I had the same kind of inflammation. I could reduce it largely when I took antibiotics for almost 3 years. I had tried several biologicals before, but none of them helped against inflammation.

Now last year my doctors recommended Skyrizi, so I'm off antibiotics since November and started that therapy. Maybe it helps, but I still need to get off cortisone completely before I know (a cortisone treatment was started right before Skyrizi to keep inflammation in check without antibiotics).

I would recommend to try another biological if Entyvio does not work. There are some more options.


thank you for your reply. So weird thing for me is last year I had cuffitis, inflammation of pouch and above the pouch. Somehow entyvio helped with the cuffitis as I have no issue now with that but didn’t do anything for the other two. I don’t get how that’s possible if they are from the “same thing” you know? I’m assuming they will just say I have Crohns but I don’t get why, if that’s true, the cuffitis solved but the other two items didn’t.

Cuffitis and pouchitis really are different. Although they both end up with inflammation, it’s very common for a person to have one but not both. Even though we don’t fully understand the mechanisms we know that they aren’t the same, so it’s not surprising that they can respond differently to a medication.

The nature of Crohn’s-like disease of the pouch is still an area of research, and even the terminology is in flux. I don’t think you have to assume it, though, to explain inflammation of the cuff, pouch, and pre-pouch ileum.

The wording is not so important unless it helps to get a therapy approved. My inflammation is called "colitis indeterminata" for now. As long as there are no fistulas or other Crohn's associated complications I wouldn't care how they call it.

I had neary every scope without sedation and so I could see how the pouch and the ileum looked on a screen myself. Usually the pouch was less inflammed than the end of the small intestine. Maybe that helps to avoid cuffitis.

Taking antibiotics once a month (as you said in another post) for some day was how I started in 2020. Then I switches to daily use and reduced the dose. But your GI doc needs to support such a treatment and not each of them is happy with it.

Have you already tried alternative biologicals like Remicade, Stelara, ...?

No they started me with entyvio and that was it. I did a few rounds here and there of antibiotics but last one was 4 months ago. And for me it is important to figure out if it is pouchitis or crohns/crohns of pouch because if I ever need to get the jpouch removed, that can determine if problem is gone since it’s just pouchitis or if it’s crohns it’s still around. Treatments right now it may not matter really, but, if jpouch os removed, that distinction will really matter.

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