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  1. Pangolin

    Proposed Crohn's model and treatment approach

    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...
  2. Pangolin

    Proposed Crohn's model and treatment approach

    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.
  3. Pangolin

    Proposed Crohn's model and treatment approach

    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...
  4. Pangolin

    Proposed Crohn's model and treatment approach

    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...
  5. Pangolin

    MR Enterography last night, felt awful for 12 hours after

    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.
  6. Pangolin

    New to hyrimoz (biosimilar to humira)

    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...
  7. Pangolin

    Stelara is working

    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...
  8. Pangolin

    Stelara is working

    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...
  9. Pangolin

    Covid vaccine booster

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

    Heard from Doc today

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

    Irritable bowel syndrome in inflammatory bowel disease: Distinct, intertwined, or unhelpful? Views and experiences of patients

    IBS is not well understood at all. At least Crohn's has some characteristic objective changes, like terminal ileum ulceration. In contrast, IBS is what they call a broad class of digestive issues when they have no idea what's going on. Since IBS is partially defined by a lack of inflammation...
  12. Pangolin

    Antibiotics for Crohn's?

    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...
  13. Pangolin

    Low Calprotectin and Remicade

    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.
  14. Pangolin

    Low Calprotectin and Remicade

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

    Low Calprotectin and Remicade

    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...
  16. Pangolin

    Vagus nerve stimulation!

    I've read a little about this before, but I never pursued it further. Sounds interesting though.
  17. Pangolin

    Interesting research/articles/videos etc.

    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.
  18. Pangolin

    Sibling being evaluated

    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.
  19. Pangolin

    Sibling being evaluated

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