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I think there are some huge epistemological and definitional problems in Crohn's, and defining remission is one of them. "Clinical remission" may be too low a bar to stop Remicade if it helped get you there.

Here's a related video, a little old but still good:

This is very interesting. I've wondered before if dilation or stricturotomy would reduce inflammation, and I even asked a surgeon about it. I was told that the procedures reduce symptoms but do not really reduce inflammation, but your case indicates that at least some of the time it actually...

Guselkumab sounds really promising. Note that it's already approved for psoriasis and could be prescribed off-label for some patients. Same goes for Risankizumab.

I don't think it's going to work because she's already had a significant dose increase, and yet her calprotectin has gone up substantially since. Not good! I wonder how the inflammation is looking on the inside.

Yikes. I doubt this is going to get under control with a dose increase. What would be the plan next?

That's not true. Kids can gain a lot of weight on EEN, especially if a tube is used. Getting inflammation down is the most important thing, though.

Bacteria is getting in through the gut lesions and getting spread to other parts of the body, so my guess is that some of the extraintestinal manifestations are related to that.

The two gold standard tests for monitoring Crohn's are: MRE, to monitor intestinal thickening, strictures, fistulas, and abscesses Colonoscopy or capsule endoscopy to monitor the mucosal lining, to see ulceration or inflammation. Next there are some less direct measures of inflammation: CRP...

Rice has been a particularly safe food in our experience.

Looking back at this thread, we were in a totally different place then. I was annoyed that people are told they *should* stop EEN after 8 weeks--there's an idea out there that it only works for that long. Really it just hasn't been studied for longer periods of time. In the papers, EEN is often...

There's been some comparison testing of different formulas for EEN. I've looked into this before and seen the comparisons. In general, all of the formulas worked about equally well. There was no particular ingredient that stood out as a no-no. I don't know if Kate Farms was part of any of those...

If Kate Farms tastes better, I see no reason not to use that for EEN.

I know you're just speaking in general, but in my son's case it was 100% Remicade-induced, without any doubt. Fortunately it did go away shortly after stopping Remicade.

Sounds concerning, good luck.

Is O on only tofacitinib now, plus some formula? When were the last doses of Humira and Entyvio?

The only one my son has liked enough is Pediasure, and the semi-elemental version Pediasure Peptide. The semi-elemental version produced better results.

Elevated fecal calprotectin plus terminal ileum ulcers is very likely to be Crohn's. At least some of your symptoms are likely to be related to that. If you need an official diagnosis, push for a colonoscopy. An MRI might give more information about the extent of the problem as well.

A well-run trial of a promising drug can definitely be worth it. However, that study is for 18+ only, and I don't know anything about Ozanimod and Crohn's.

We've tried Remicade, Entyvio, and then Stelara. Humira is similar to Remicade in that they're both biologics that block TNF. Entyvio blocks a different pathway, and Stelara blocks yet another. We noticed the best results with Stelara, and no noticeable side effects so far. Entyvio had low side...