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Psychiatric explanations for the appetite/swallowing issues are probably wrong. He has problems with his digestion, and that's probably causing all of this. Sending the poor boy to psychotherapy rather than figuring out the underlying problem sounds all too common for our medical system. When...

My son was on strict EEN when he started Stelara, and we very slowly started to add food back in after we were sure the Stelara was really working, by the way.

It's too soon to say anything about that. But I think adding something like EEN or antibiotics here could be very helpful. Edit: generally it sounds like the Stelara is helping, and it's going to take some more time to see if he's going to need more frequent dosing. The Stelara may need a...

I'm concerned about the high sed rate. That's saying something significant I think.

I'm not very familiar with celiac diagnosis, but I can tell you that many people with Crohn's have very subtle symptoms. If you're continuing to have symptoms, you may want to try the Skyrizi and see if it helps. You don't have to stay on the drug forever if you don't want to.

Did you have a colonoscopy? Calprotectin alone won't be sufficient to diagnose Crohn's, but all of those elevated calprotectin numbers are consistent with Crohn's.

In my son's experience, Pediasure with fiber was equally as effective as Pediasure without fiber, and both were not quite as effective as Pediasure Peptide.

Notice also that with a damaged gut and an immune response to many foods, it shouldn't be a surprise that it would result in inflammation, which might prevent the gut barrier from healing. So EEN can help by reducing the antigen content of food, including the bacterial content, resulting in...

The big thing I see here is that Crohn's patients are having immune responses to *many* foods. This could mean two things: 1. Crohn's patients' immune systems are *responding* much more to everything, and/or 2. Crohn's patients' immune systems are *exposed* much more to everything #1 doesn't...

The elemental or semi-elemental EEN suggestion is a good one. We noticed a substantial improvement when we switched from polymeric to semi-elemental formula.

This sounds familiar. My son was on EEN for a really long time because every time we tried food the symptoms got a lot worse. We tried Remicade and Entyvio, and inflammation persisted despite those plus EEN. Eventually he had a resection of the terminal ileum and got on Stelara, and things are...

The really serious but effective dietary intervention is Exclusive Enteral Nutrition (EEN)--an all-formula diet. It's commonly used for kids but can also work for adults. Regarding medications, you may want to look into biologics such as Stelara.

One thing about Crohn's that I think is pretty clear but not well understood is the idea of downstream effects. I'm pretty sure that somehow areas of inflammation in the small intestine often cause inflammation in the large intestine, because one thing that's been observed is that small...

I have noticed a positive correlation between inflammation and abdominal bloating, given equal food intake. This is one of many indicators you may begin to notice of how sick or healthy he is. Obviously eating more also takes up more space in there, too. I think there's a good chance MRI will...

I don't really have any suggestions on nausea or what the cause might be, but odds are good that this isn't Crohn's. Classic Crohn's symptoms would include abdominal pain and diarrhea 3+ times per day persisting for a long time, and labs would usually show low hemoglobin and signs of...

No reactions though, that's great so far. I think your son is only the first or second person I've seen on here starting Skyrizi, so I guess it's too early to see any trends from patient reports.

Technically he was told he could have a normal diet almost immediately after surgery, but we quickly discovered independently that EEN really helped at that time. I think it was a mistake for that not to be recommended by the doctors. The exact timeline was something like: EEN for about 6 weeks...

Ok here's my son's experience with surgery: He had a stricture at the end of his small intestine. It was there for years, and the biologics weren't able to touch it--if anything, it was slowly getting worse. So he had a surgery and had that short section of intestine removed, something like 6...

In general you want to preserve as much intestine as possible, and surgery after surgery removing more and more is definitely a problem. However, some people have a small region that's just not responding to any medicine, and there's just nothing that can be done about it except to take it out...

Some people say their Crohn's gets better when pregnant, and others say it gets worse. Active Crohn's would surely make pregnancy riskier, but some people do it. Maybe you could find a way to quickly get the Crohn's more under control? If none of those medicines are working, you still have some...