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I’ve had pouch for 23 or so years. Pouchitis a couple times a year. Recent scope showed some inflammation at the pouch inlet. I’ve heard this is common and could be backwash ileitis or just pouchitis. Obviously my concern is that it’s Chrohns, but I seem to do fine on antibiotics and then ok when I’m off antibiotics. The GI doc I see is not super experienced and said I might need a MRI to rule out Chrohns. Anyone have inflammation or ulcers in their pouch inlet and do ok? I definitely do not want to go on biologics. I’ve read a good amount and have seen info that Dr. Shen would not call it Chrohns, so I’m hopeful.

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@Scott F the GI doc who did the scope does not have much experience with J pouches. He was thinking Crohns and even mentioned biologics, but I’ve seen these young docs jump to conclusions. The last scope I had a year ago did not show any of this lesion in the inlet. I respond well to antibiotics. If I didn’t, would biologics really be the next step? I’ve had the pouch for 23 years and never once has Crohns been mentioned. It’s kind of anxiety inducing and I am really trying to not worry. Thanks for all your support on here.

@DJJ2019 posted:

Obviously my concern is that it’s Chrohns

Why? It doesn't make a difference what label you slap on it, it's inflammation and needs to be treated regardless. And all the treatments are the same regardless of what label you choose, so it makes no meaningful difference. I also have inflammation at the J Pouch inlet, first seen at the 15 year mark of my pouch which is now 30 years old. Inflammation is common in this area because of backwash stool as you mentioned, and it tends to be more resistant to treatment. When I went on Remicade in 2015 it mostly cleared me up, except for the J pouch inlet and the neoterminal ileum just above the pouch. It's mostly just simmering in a few discreet areas, but it's resistant to treatment.

I wouldn't lose too much sleep over it but you do need to stay on top of treating it, especially if you have symptoms of pouchitis.

Last edited by CTBarrister

@CTBarrister thanks for the input on the inlet and the backwash. I’m hoping it’s that and that nothing extends into the rest of the small intestine. The issue I have is that if the military docs do label it Crohns, they can push me to take biologics, which ends my career. So if it’s something that can be treated conservatively at first until I can retire in a few years, I’d want that. Hopefully it does not come to a head, but if it does, I can try to get a private doc to give an opinion. But if conservative treatment does not work (it has for years) then I’ll take my health over my career and use the biologics.

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