Search results

I regard this as somewhat similar to my son's situation, and I believe Remicade was at the root of the problems.

When it became clear to me that Remicade wasn't the right thing for my son, we noticed that toward the end of the infusion cycle he would get a sore throat and feel some nausea. A couple of cycles later when he finally stopped Remicade, he developed a fever and could barely keep anything down...

Humira may be covered by your insurance, but you could also try other medicines such as Stelara. If you currently have inflammation in your intestines (which is something you may need some testing to determine), it's important to do something to reduce that inflammation.

I know this is slightly off topic, but if the inflammation is focused on one particular area or if there's some narrowing/stricturing, surgery can be very helpful.

I've always understood the idea of a "beneficial" microbiome not so much the idea that we gain any benefits per se from "good" bacteria as the idea that some bacteria are worse than others, and certain "good" bacteria can benefit us simply by outcompeting any pathogenic bacteria while not...

I'm skeptical of MTX and the reports of "brain fog" I've read, even at low doses. My son was prescribed MTX at first but we ended up refusing it (correctly, in my opinion).

How's the ESR and CRP looking? Any symptoms? ESR over about 12 combined with the elevated calprotectin would definitely be a concern. I haven't seen a lot of success here with Remicade dose increases.

Anti-TNFs can have some paradoxical effects, especially after a dose increase. Sometimes I think the body fights even harder against the Anti-TNFs to increase inflammation. I would strongly recommend ending the Anti-TNF and switching to a different treatment. I would check for any area that...

I'd be very concerned about the ESR and calprotectin. Ask about getting an MRI.

I don't think I've seen a single case on here in which someone had an anti-tnf dose escalation and then they went into long-term remission.

Assuming he's on no treatment at all right now after the resection, he should start thinking about trying some things considering his persistently elevated fecal calprotectin. He doesn't want to let that go too long because it would result in further damage to the intestine. Maybe he'd like to...

I would not expect the various options mentioned in the OP to help. Crohn's is very hard to deal with. I will say that the only non-pharmaceutical option likely to work is a consistent diet of only formula (EEN). A few people have great success with that alone and stay on it long-term, while...

I don't remember exactly. Maybe 4 or 5 days? We probably stayed a day or so longer than he really needed to, but fortunately they weren't really pushing him out fast.

I think the larger incision at the bellybutton is pretty standard. Not sure about 3-6 inches, but that's definitely where the portion of intestine came out for my son. It's healed up pretty well, not too noticeable. Recovery was better than I expected, overall not too awful. Surprisingly little...

Those are concerning numbers, and you do need to focus on getting them down even if symptoms aren't bad. I recommend Stelara over Humira or Remicade.

I'd say you have confirmation now that the Modulen diet helped and that he still needs treatment. What about going back to EEN while also pushing for something like Stelara?

Crohn's, and typically there was no blood, but occasionally there was some.

Shortly after my son started Remicade, when it was becoming obvious that it wasn't working very well, we switched his diet to EEN (all formula). I think that was the only thing that prevented a serious downward spiral and hospitalization until we eventually figured out other options. (what we...

Have there been further investigations of the formerly strictured part? Does it look ok on colonoscopy/pillcam and MRI? It may be that the area continues to be a problem even if inflammatory numbers are low.

So, when my son was diagnosed with Crohn’s and an abscess, he was immediately put on flagyl (metronidazole) and given a feeding tube, and by the next day there was already a huge improvement (abdominal pain nearly gone). This led me to be very positively inclined toward antibiotics for...