Hi Sean! We met in Neu Odessa bar in Berlin earlier this year. I was the "nearly-YC" guy from Scotland. Glad to see you are getting this out there now. Good luck with it!
A Social Network for Crohn’s Disease – Crohnology (YC S12)
11–20 of 23 posts
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#12I'm am concerned by this. Specifically with this linked site, Crohns and Colitis are not the same diseases and have different treatments, yet the data is lumped together, this is irresponsible. Secondly the masses are now always right, this can easily fall into a movement of bad advice and skewed product ratings without oversight by the maintainers, actual doctors, and research with peer review. For the record I've d…
While I agree that the data should not be lumped together, the treatment options for Colitis and Crohns are almost entirely the same, at least in terms of biologics, steroids, and NSAIDs. My doctor isn't 100% sure whether I have Crohns or Colitis (biopsies say colitis, but inflammation characteristic of crohns).
Secondly, I must say that I find diet is extremely important when you have IBD. Now, I'm not about to go off of all my medication and grab some Vitamin B tablets, but I, like most patients, have trigger foods that will almost certainly cause me pain.
Additionally, past studies have shown enteral feeding to be extremely effective (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378894/), suggesting that diet is a major factor. Again, fecal transplants are widely successful (http://journals.lww.com/jcge/Abstract/2003/07000/Treatment_o...) and the FDA is reviewing fecal transplants as a viable treatment option. Again, if fecal transplants do work, then a necessary cause of crohns/colitis could be an imbalance of gut bacteria, caused by poor diet/antibiotics/preservatives
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#13I'm am concerned by this. Specifically with this linked site, Crohns and Colitis are not the same diseases and have different treatments, yet the data is lumped together, this is irresponsible. Secondly the masses are now always right, this can easily fall into a movement of bad advice and skewed product ratings without oversight by the maintainers, actual doctors, and research with peer review. For the record I've d…
It's an iterative and building process for us to get where we want to go with Crohnology. The start is less scientific, but as we build better software, with larger N, and bring on the involvement (and attract the attention of) more researchers and doctors, things will build their rigor. If you believe in the vision, of gathering patients together to collect and learn from more real-world data points, in concert with…
In medicine we lump UC and Crohn's because they are both inflammatory bowel diseases. I think it's entirely reasonable if you do the same (at least / especially initially).
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#14Sean! I love you!
My sister, 14 next month, was diagnosed ~18 months ago with UC. Everything has been such a roller coaster for her, it's been unbearable. On and off this and that medication, etc, etc - after reading through crohnology.com/testimonials, it seems like you guys really get it. :)
Do you have any tips on how best to introduce her to the site? You and your team, I glean from your Stanford talk, have made a real commitment to making the site as friendly as possible (not in the usual "even dumb users will get it" guruspeak sense, but actually friendly - you know, in the "friend" sense). So let me lean on you.
Right now, this month and last, is/has been such a critical time for her, medically and, due to the nature of the illness, personally. She's inherently super shy, so it took her a long time to open up with her first doctor and start moving forward-- but he moved recently, and the new doc, well, just ain't working out... But the thing is - and this is why I'm so fucking happy you've made Crohnology! :) - she's also a very bright girl who knows the ins and outs of the treatments she's going through. (And she does the social thing online, has 50 apps on her phone, yada yada - picking up functionality will be a non-issue.) So you see how, shy girl + a personal medical issue + C.com = 8 birds with one stone for her.
My single (hopefully ignorant) worry is that my sister, being 13 and shy, will come on the site and think, 'This isn't my crowd.' Or something to that effect. Please, please, please, tell me I'm being a big, dumb idiot and why, or just point me somewhere that might be a good first link for her to visit, or... anything! I know from your vids you've thought about this stuff in and out!
Eternally Grateful,
Mike
P.S. - Commented here rather than on your site because I wasn't sure what the policy on the undiagnosed barging in on the community was. Given the personal nature of things, there's definitely an advantage to keeping things "members only." That said, if you feel this discussion is better had in say, the comments section of a post on C.com/blog, I'm happy to sign up and repost over there. :)
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#15This looks awesome, I'm forwarding it to my mother who has Crohn's! Thanks :)
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#16Earlier quoted context omitted.
It's an iterative and building process for us to get where we want to go with Crohnology. The start is less scientific, but as we build better software, with larger N, and bring on the involvement (and attract the attention of) more researchers and doctors, things will build their rigor. If you believe in the vision, of gathering patients together to collect and learn from more real-world data points, in concert with…
In medicine we lump UC and Crohn's because they are both inflammatory bowel diseases. I think it's entirely reasonable if you do the same (at least / especially initially).
I've been diagnosed with UC 10 years ago, only recently doctors changed their diagnosis to Crohn's disease (btw it's called Leśniewski-Crohn disease here). Apparently it's hard to distinguish, and I think it's good to keep them together.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#17This reminds me of a Ted Talk I saw a while back that really stuck with me. The guy's brother was diagnosed with something and he created a site for others to post and track their treatments and also review others' treatments and outcomes. I tried searching for it but can't find it.
Love the idea! It's nice to see that YC gives these niche greater good startups a chance.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#18Nice picture!
4:15a "I was in pain level 8"
12:30p "I ate hamburger and fries"
Seriously, is it really a disease or a sucker game?
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#19Seems like a good place to shoot the shit.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#20Nice concept; I'm lucky that I've (knock on wood) been in remission for the past few years, but I nearly died of the damned thing thanks to a series of misdiagnoses. Luckily, my (then-future) father-in-law has UC, so my wife was able to recognize my symptoms as an autoimmune condition and prompt me to get more effective help.
Though more info is out there now, at the time everything I learned about Crohn's/UC came from medical textbooks and journals, which is not exactly a scalable way to find out about your life-threatening illness. Something like this definitely has the potential to bring a lot of value to people who are suffering. Thanks for bringing it to life!