6 ms·

Likewise on the welcoming of any bit of research! I ended up in the hospital about a year ago and found out it was the result of Crohn’s (34 years old). Anothe

Likewise on the welcoming of any bit of research! I ended up in the hospital about a year ago and found out it was the result of Crohn’s (34 years old). Another hospitalization, countless diet attempts, medications, and biologics, finally found something that worked, other than prednisone. If there is one thing I realized, it is that the effectiveness of treatments really is dependent on each individual’s biology. Possible foods that trigger me were completely fine for others I had spoken with, and vice versa. It’s encouraging to see as much research as there is and makes me hopeful not just for myself, but for others with the same condition (many who have it far worse than me).

jcrben 5y ago
I got Crohn's about the same age (34). 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/ https://pubmed.ncbi.nlm.nih.gov/32412598/
- bladegash 5y ago
  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!
- nikkwong 5y ago
  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?
  - jcrben 5y ago
    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. Decreasing microbes is posited as one of the possible mechanisms of action IIRC. See the CD-TREAT diet https://pubmed.ncbi.nlm.nih.gov/30550821/ https://pubmed.ncbi.nlm.nih.gov/30550821/
    - nikkwong 5y ago
      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?
      - jcrben 5y ago
        I think it helped a lot and I did a bit of a mini crossover trial where I did the enteral nutrition for a few weeks and then not. And yeah the elemental formula I tried is https://www.integrativepro.com/products/physicians-elemental-diet https://www.integrativepro.com/products/physicians-elemental... but it's super expensive, tastes terrible, and studies don't show that it has better results than polymeric formula. 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.
    - girvo 5y ago
      > Ensure Plus chocolate with no added fiber This is entirely unimportant, but I always really liked the taste of that one.
- pjbk 5y ago
  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 https://en.wikipedia.org/wiki/Durvillaea_antarctica. It seems to have some nutrients similar to mucilagen that acts like a buffer in his case.
fnord77 5y ago
just curious what your triggers are... for me, it is grapes (but not things like blueberries), caffeine and cashews I suspect w/ the grapes, there's maybe some microbes or fungi on the skins
- laurent92 5y ago
  Caffeine? How did you isolate this cause? Do you think Nespresso’s alu capsules are involved? Since I drink Nespresso I have strange bowel movements, extreme tiredness and getting fat.
  - fnord77 5y ago
    coffee, tea, coke, diet coke, energy drinks all set me off. decaf coffee and tea do not. So I am assuming caffeine is the problem. Caffeine does increase intestinal motility. Of course it could be something in those drinks, but I'm fairly certain it is the caffeine.
    - hollerith 5y ago
      Most (all?) so-called "decaffinated" coffee has a decent amount of caffeine.
      - fnord77 5y ago
        maybe like 1/10th or less. not enough to trigger me
- bladegash 5y ago
  Grains are a big one for me. Red/fatty meat also seems to be one as well. I will say it’s been difficult to pinpoint exact triggers and far easier to pinpoint things that don’t trigger me though. I know rice/chicken are two things that I tolerate well. Dairy seems to be fairly well tolerated too. Bland crackers like saltines and even Nilla wafers are usually fine as well. Oddly, one thing that really triggers me is things that are fruit snacks/similar items. Not sure if it is gelatin or what, but something in them sets me off.

jcrben 5y ago

I got Crohn's about the same age (34). 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/ https://pubmed.ncbi.nlm.nih.gov/32412598/

bladegash 5y ago
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!
nikkwong 5y ago
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?
- jcrben 5y ago
  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. Decreasing microbes is posited as one of the possible mechanisms of action IIRC. See the CD-TREAT diet https://pubmed.ncbi.nlm.nih.gov/30550821/ https://pubmed.ncbi.nlm.nih.gov/30550821/
  - nikkwong 5y ago
    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?
    - jcrben 5y ago
      I think it helped a lot and I did a bit of a mini crossover trial where I did the enteral nutrition for a few weeks and then not. And yeah the elemental formula I tried is https://www.integrativepro.com/products/physicians-elemental-diet https://www.integrativepro.com/products/physicians-elemental... but it's super expensive, tastes terrible, and studies don't show that it has better results than polymeric formula. 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.
  - girvo 5y ago
    > Ensure Plus chocolate with no added fiber This is entirely unimportant, but I always really liked the taste of that one.
pjbk 5y ago
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 https://en.wikipedia.org/wiki/Durvillaea_antarctica. It seems to have some nutrients similar to mucilagen that acts like a buffer in his case.

fnord77 5y ago

just curious what your triggers are... for me, it is grapes (but not things like blueberries), caffeine and cashews I suspect w/ the grapes, there's maybe some microbes or fungi on the skins

laurent92 5y ago
Caffeine? How did you isolate this cause? Do you think Nespresso’s alu capsules are involved? Since I drink Nespresso I have strange bowel movements, extreme tiredness and getting fat.
- fnord77 5y ago
  coffee, tea, coke, diet coke, energy drinks all set me off. decaf coffee and tea do not. So I am assuming caffeine is the problem. Caffeine does increase intestinal motility. Of course it could be something in those drinks, but I'm fairly certain it is the caffeine.
  - hollerith 5y ago
    Most (all?) so-called "decaffinated" coffee has a decent amount of caffeine.
    - fnord77 5y ago
      maybe like 1/10th or less. not enough to trigger me
bladegash 5y ago
Grains are a big one for me. Red/fatty meat also seems to be one as well. I will say it’s been difficult to pinpoint exact triggers and far easier to pinpoint things that don’t trigger me though. I know rice/chicken are two things that I tolerate well. Dairy seems to be fairly well tolerated too. Bland crackers like saltines and even Nilla wafers are usually fine as well. Oddly, one thing that really triggers me is things that are fruit snacks/similar items. Not sure if it is gelatin or what, but something in them sets me off.