Devin

#IBD patient looking to help #propelacure in whatever small way I can. How can we bridge the gap between researchers, HCPs, and patients.

[Devin @devin_ibd]

@IldikoMe One day I want to have 10% of your clarity, ferocity and impact. You are indeed aptly named, Ildiko. Thank you for your work 🙏

[Devin @devin_ibd]

Kind of crazy that it's been 7 years since we've had alternatives to humira but we're still beholden to abbvie. What is going on? https://t.co/OIuBjSOumQ

[Devin @devin_ibd]

@CrohnsVaccine Status?

[Devin @devin_ibd]

What happened with @CrohnsVaccine? Seems like a dead end but curious why. The MAP infection has no causal relationship Crohn's or vaccinating against it was too little too late perhaps?

[Devin @devin_ibd]

Now that turmeric is thrown out I wonder if ginger will be recommended more and if it will be worthwhile for helping with auto-immune https://t.co/eepy234QF3

[Devin @devin_ibd]

@openmind1929 @charlie_lees I myself tried SCD for a few months this year and found it underwhelming especially given the social costs. I will likely try it again because I want to really test its efficacy for my disease but it doesn't seem like the silver bullet for everyone.

[Devin @devin_ibd]

@openmind1929 @charlie_lees Probably because we don't have the data to support it and it's incredibly restrictive. In his recent talk "Is Diet the Cause of IBD" Dr. Lees indicated he'd recommend Mediterranean diet if anything at all. https://t.co/ySvdVeKeff

[Devin @devin_ibd]

@charlie_lees Where can I find a standards or protocol for discriminating between mild, moderate, severe, high risk to classify my disease?

[Devin @devin_ibd]

@RishikaChughMD After talking to your office it sounds like you can only accept residents of CA. Thank you for doing this much-needed work nonetheless.

[Devin @devin_ibd]

@dani_s_writes Sorry you're dealing with that. Shot in the dark but hypnotherapy?

[Devin @devin_ibd]

@DrMikeDolinger @DrPhil_Gu @IldikoMe @BowelUltrasound @IBDCedarsSinai @ChildrensLA @malloc_doc @UCSFMedicine @RishikaChughMD Fantastic! Anything developing in Denver, Phoenix, Las Vegas, Salt Lake City to your knowledge? Would love to track those developments.

[Devin @devin_ibd]

Hey @DrMikeDolinger thank you for your work and advocacy. How can patients like me find clinics/centers that are using IUS in the US? I know the list may be short but I'd like to see if I can't swing my way over to one.

[Devin @devin_ibd]

Two weeks ago I re-introduced animal products back into my life after nearly 10 years of being vegan! It was very difficult mentally and physically but I knew I wanted to give SCD a try and I have basically lived on now "illegal" carbs and soy.

[Devin @devin_ibd]

Starting the Simple Carbohydrate Diet today! Wish me luck.

[Devin @devin_ibd]

I also wonder about L. casei because that's in the commercial yogurt I'm probably going to use for starter. I hope I can be successful with yogurt quickly. I know it can be finicky.

[Devin @devin_ibd]

I see that Elaine Gottschall recommends against bifidus (Bifidobacterium) in yogurt starters with SCD. However, after reading a piece by @Sherry_CL on recent research, I wonder if the bacteria should be recommended. https://t.co/B61OaU2vBI

[Devin @devin_ibd]

@propelacure These are shocking percentages. From where are they sourced?

[Devin @devin_ibd]

@propelacure @TheXavierLab @broadinstitute @MassachusettsG2 "Crohn’s patients [have] certain gene expression signatures even when their tissues didn’t look inflamed." This seems promising for earlier diagnosis and disease monitoring.

[Devin @devin_ibd]

@LGodny @IldikoMe @ShomronH @D_ECCO_IBD I had no idea this was so nuanced. Perhaps it makes sense to localize dieticians as well? I've never been recommended a dietitian or any diet protocol which always struck me as strange. Maybe it's something I'll consider as I am exploring SCD in a few weeks.

[Devin @devin_ibd]

@bottomlineibd I relate as a relatively new IBD patient. Obviously I'm motivated to move the needle for my own well-being but hearing about these children having their lives disrupted is a sobering thought.