Could this be Crohn’s Disease?

Ah, ok, I see. I'm in California too but not on Kaiser. My girlfriend is though, so I kind of know how they work in house. You might be able to get the test done and work with Prometheus to pay your own cost out of pocket. I think they'll do that for a couple of hundred, if that's something you can afford and would be interested in. If not, of course, I understand.

Good luck and let us know if anything comes up again.

Interesting. I'd say this is more evidence to suspect Crohn's disease, to get an indictment, and even enough to put it on trial, but is it enough to convict? Hard to say. A biopsy of that area would be ideal to help seal the diagnosis, but it just isn't realistic.

I wouldn't be too scared about what you read. Yes, it's true that finding crohn's activity up high is associated with more severe disease, but remember this: You've already had colonoscopies and MRIs that show your disease (assuming it's Crohn's) is not at all severe in other locations and is, in fact, quite mild so far. And those findings from the scope and MRI are more significant in assessing your current situation and future than any association studies.

Remember, I have it in the small bowel, stomach, duodenum, colon, etc, and having it in the stomach and duodenum is associated with more severe disease courses. But I've had it for 35+ years and it has practically never been severe (other than two hospitalizations in 2006, and even then it wasn't endoscopically severe, just very symptomatic).

As for whether it's harder to treat, it's tough to say because most all of the drug trials are focused on healing the colon and/or terminal ileum and assessing that healing based on coloscopies. So not as much is known about whether the meds work the same in the more proximal bowel. It's kind of assumed they do and will but it's not known in terms of having mounds of supporting data.

But with the mild levels of inflammation seen for you, treatment may not even be necessary. You could wait and see how symptoms manifest over the coming months and years, all while getting periodic scopes and MRIs, and only go on meds when needed if there's a clear worsening of test results or symptoms.

I hate to push it again (it almost makes it sound like I work there), but I do think this case is a perfect example of a situation where the Prometheus Labs IBD serology would be worthwhile. If it comes back predicting Crohn's, I think that would just about seal the diagnosis. If it comes back saying Crohn's not predicted, then you could continue to pursue all possibilities (and not rule out Crohn's entirely, because it's not a perfect test, but it's probably right 90% of the time).

I find it unusual that the radiologist used the words "proximal small bowel". Does it refer to duodenum or jejunum? In my case, the inflammation was located in proximal ileum. So it is quite specific.

Pretty often on here I've found on here that I disagree with a GI's treatment plan or something the GI says.

But in this case I pretty much agree with your GI's assessment and plan. I think this is likely Crohn's, and likely right now mild Crohn's, and that mild Crohn's doesn't need biologics or heavy-duty therapy at least for the time being - as long as it stays mild.

How long will it stay mild? Impossible to know. Could be just months before it gets worse. Could be twenty years. Or it might never get worse. Maybe 20-30% of people with Crohn's have it mild and never develop strictures or fistulas and can go with only occasional treatment interventions.

I think it's completely reasonable NOT to start top-down treatment for mild Crohn's, because top-down treatment is very expensive and also has risks of significant side effects. Granted, those risks are low and unlikely, but they are possible. The less time one is immunosuppressed, the better. If you *need* them, use them. If you can avoid them, avoid them.

I say all this with one important caveat: You must be a good patient and get good follow-up care. That means getting a colonoscopy or MR enterography every year or two (or alternating, colonoscopy one year, MRI the next, colonoscopy the next, MRI the next), etc. That way you keep a good eye on the disease and are ready to change treatment course if you see any worsening. If you don't see worsening, continue med free and watching it closely. I did that for a couple decades before deciding it was worth trying a biologic when scope findings were a bit worse than they had been before.

You don't want to be the patient that goes ten years with no testing only to end up really sick with a blockage/stricture. That does happen.

But if you stay on top of periodic testing, chances are very good you can head that off.

And of course if your symptoms worsen in the coming months/years, be ready for a more tests and possible treatment changes.

The budesonide won't do any good long term in changing your disease course, but it can help with symptoms in the short to mid-term (a few weeks to a couple months), without having many of the side effect risks of prednisone. So if you're having problems with symptoms, it's reasonable to take a course of budesonide. If you're not having many or any symptoms, it won't do much of any good.