A couple years later at 36 I'm now on better health than I've ever been. I responded well to a biologic (vedolizumab aka Entyvio). But I also did exclusive enteral nutrition for months concurrently to help push me the edge. These days I eat a lot of sweet potatoes and chicken, with relatively little processed food.
Hah, funny enough Entyvio was my first biologic and I didn’t respond to it! I’ve been on a biosimilar of Remicade for about 2 months now and for the first time in over a year, am completely off prednisone and in remission!
Congrats on finding something that worked and hoping for the best for your continued remission!
My dad was diagnosed with CD around 20 years ago. Besides going through the usual cortisone treatments to control his flares and monoclonal antibodies starting with Remicade, then a couple of other ones that were less effective and now Humira, he has discovered that eating a cup of boiled Durvillaea kelp every day helps with his symptoms: https://en.wikipedia.org/wiki/Durvillaea_antarctica. It seems to have some nutrients similar to mucilagen that acts like a buffer in his case.
How did you conduct your enteral nutrition? As far as I know, it's not common practice to begin a course of enteral feeding for anything other than a few specific circumstances. I've also heard that it decreases the number of bacterial species that the gut houses from thousands to just several hundred; which can have health impacts that we don't yet fully understand. Can you talk more about this?
I used Ensure Plus chocolate with no added fiber. Regular Ensure in the cans has some prebiotic added fiber which was tough on me
EEN is a well-described and effective therapy for Crohn's. Used less in adults, and much less common in North America for whatever reason (awareness is probably kinda low). The trials establishing it happened back in the 1980s IIRC.
Ah; so that was a sort of elemental diet (if you've heard of them) for you. How much credit would you assign to those courses in helping overcome your disease?
Ultimately ideally you only go through the bad phase once. If you can get into remission earlier you have a better chance of durable deep remission where your gut is totally repaired and your chance of the negative flywheel of wound -> bacteria leaking into bloodstream -> tnf inflammation -> bigger wound is minimal.
A couple years later at 36 I'm now on better health than I've ever been. I responded well to a biologic (vedolizumab aka Entyvio). But I also did exclusive enteral nutrition for months concurrently to help push me the edge. These days I eat a lot of sweet potatoes and chicken, with relatively little processed food.
I also feel like theracurmin helps me https://pubmed.ncbi.nlm.nih.gov/32412598/