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Well, Crappy Dad, I have a story for you. Very condensed version: Son had perianal abscess and inflammation/thickening at the terminal ileum. Tried Remicade and EEN, inflammation got better. While still on Remicade, ate more food. Inflammation exploded. Back to EEN. Inflammation goes back down...

If the biologics aren't working, your only real non-drug options are EEN and surgery. EEN is great for getting inflammation down fast, and I think it's a good first step for anyone trying to reduce inflammation while they figure things out. Surgery is sometimes a better option than trying...

In general, the insurance requirement is that you must have tried and failed Humira or Remicade (or biosimilar) before trying Stelara. Usually they do not require patients to try both Humira and Remicade before moving to Stelara if their doctor is prescribing Stelara. Usually there is also no...

Remicade does occasionally cause liver damage, but those numbers might go down by themselves. The elevated calprotectin indicates that Remicade is not doing what you need it to do. Maybe it's time for a switch.

You should be able to appeal and win by giving them evidence that you tried Humira and that it failed. You may also need to point out that Remicade and Humira both have the same mechanism of action.

The major current choices of biologics after Remicade are: Humira (same mechanism of action as Remicade) Entyvio Stelara and you might be able to access some newer ones such as Skyrizi, with some effort/insurance appeals. Personally, if I were you I'd try to get either Skyrizi or Stelara...

Tangentially related: although high bilirubin levels are the usual clinical focus, low bilirubin levels are associated with higher inflammation in Crohn's patients.

The low calprotectin is great, but the MRI does indicate some small bowel thickening and some "reactive" lymph nodes. That likely means there's still some immune response going on, so I wouldn't say the Crohn's is totally in remission. It sounds like things are going in the right direction, but...

The microplastics-IBD relationship is very likely to not be causative but rather related to some other factors that are causative. eg foods that contain microplastics are also more processed and harder on the guts in general for other reasons. This difficulty of interpretation is a problem that...

Note that the dominant mouse model of Crohn's involves having the mice drink water laced with dextran sodium sulfate (DSS), after which the mice have long-term intestinal inflammation. I wonder if there are some components of modern human diets that act similarly.

I don't think there will be a single cure found in the same way as there is no cure for a cut on your arm. However, if you do the right things you may find that it's no longer a problem. Some people do get the right treatments and have remission for the rest of their lives, sometimes even after...

Crohn's is characterized by inflammation in the intestines. The immune system is responding to some antigen in the region, and, since no autoimmunity has been discovered, it is probably the result of foreign material reaching areas that expose it to the immune response. Theories of causation...

Breeza is really not so bad and generally doesn't cause nausea. It's kind of like flat sprite with a bit more of an artificial flavor. Pretty tolerable overall, but it does generally cause some loose stool later.

A sedimentation rate of 80 implies a lot of inflammation or a serious infection. My son had a sed rate near that when he had an abscess. I'd ask the doctor about metronidazole and amoxicillin to see if it helps. If your son can't tolerate Modulen by mouth, you could try a feeding tube. An...

Yes that's right, normal FCP for a long time. For anyone just reading this, here's what worked/helped: EEN as necessary to keep things mostly under control while everything was figured out. EEN was not sufficient by itself in his case, but food at the wrong times would have put him into the...

Alright it's time for an update. My son has been on Stelara for a bit over a year now. He was also on EEN for a long time, and we have slowly been tapering the formula and adding more food. Currently his diet is mostly ordinary food of his choice, avoiding certain things that were more of a...

If you had a horrible time with the first three, you should absolutely not get the fourth.

Wow what a change. Diverting away from the very severe area and trying upadacitinib actually sounds like a really good plan to me.

Metronidazole was very effective along with EEN when my son was diagnosed. Metronidazole isn't a great medicine to stay on for very long, though, and when we tried it again at a later date it didn't seem to do much. I think amoxicillin has also helped my son's Crohn’s at times, although the...

Very interesting, thanks