I have Crohn's, an incurable digestive disease, and built Crohnology • Hacker News Board

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#11

Post by zerohp » Tue, Sep 13, 2011, 11:58 PM UTC

mynameishere wrote: post #8

How is it I've heard of all kinds of largely non-existent (today) diseases like Cholera, Typhus, Typhoid, Scrofula, Gout, etc, but as soon as I got on the internet, everyone seems to have Crohn's, which I had never heard of pre-internet?

People don't talk about it. I have two friends with it, and I knew both of them for years before they told me.

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#12

Post by kefs » Wed, Sep 14, 2011, 12:01 AM UTC

This is great! As a sufferer of bowel problems for many years, I developed PoopLog for Android to track my bowel habits using the Bristol Stool Scale [1]. Software like ours really do help everyday people, and the daily emails I receive from my users make everything worth it. Good luck!

For the curious, my next update is a rather large one including many more logging options, charts, and trends.

[1] https://secure.wikimedia.org/wikipedia/en/wiki/Bristol_Stool...

edit.. link to my app: http://market.android.com/details?id=com.kefsco.pooplog2

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#13

Post by malbs » Wed, Sep 14, 2011, 12:02 AM UTC

I was diagnosed with Ulcerative Colitis 4 years ago, and over that time I have basically stumbled across other people who have either colitis or crohns (they're similar diseases), so it's nice to see that Chronology is for sufferer's of either disease.

What I was going to say was - it's difficult to find other sufferers because people tend to shy away from talking about it - it's only when you mention the disease first that others seem to be willing to admit that they also have it. Comments I've received in the past have been "I can't believe you're so open about it" etc

I'll talk to anyone about it, because you never know when someone elses point of view will give you some new piece of information you didn't have (ala Alan Kay's "point of view is worth 80 iq points" quote)

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#14

Post by kevin_morrill » Wed, Sep 14, 2011, 12:07 AM UTC

Congratulations on the launch Sean! I hope more folks from the HN and Startup communities will think about getting involved in healthcare. It's 20% of the economy right now, and there's so much opportunity for innovation.

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#15

Post by Klonoar » Wed, Sep 14, 2011, 12:08 AM UTC

I have a younger brother with Crohn's, and just wanted to say major props on you for building something so useful. It's easy to get caught up in the typical glam/tabloid-esque nature of the industry that's largely here on HN, so going against the grain like this really deserves respect points IMO.

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#16

Post by jsarch » Wed, Sep 14, 2011, 12:09 AM UTC

I admire and applaud your endeavor and hope that we see more disease-specific communities sprout in the near future.

I attended the Consumer Genetics Conference last year (http://www.consumergeneticsshow.com/CGC2010.html) and heard Rolf Benirschke speak. His short speech was inspiring and further encouraged me to pursue my startup.

Ping me offline archuleta(at)seqcentral and I'd be happy to further discuss how I can help and who I might be able to get you in touch with.

(FWIW: I recently became an advisor for a cystic fibrosis non-profit with a similar e-community to the one you are pursuing.)

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#17

Post by waterside81 » Wed, Sep 14, 2011, 12:13 AM UTC

I never heard of this disease until Mike McCready, guitarist for Pearl Jam, came public with his long battle with the disease. He talked about how he had to leave the stage, sometimes in mid song, because of complications arising due to Crohn's. Really raised the profile of the disease (at least amongst PJ fans!)

Here's the link to his interview:

http://www.everydayhealth.com/crohns-disease/pearl-jams-mike...

Apologies for the site it's hosted on, tons of ads and the interview is broken up into 10 pages.

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#18

Post by herbivore » Wed, Sep 14, 2011, 12:14 AM UTC

I would really like to know how many of the commenters who have or know someone who has Crohn's have cut dairy out of their diet.

My brother and a friend of mine both have Crohn's and have been doing much better ever since I suggested they stop consuming any dairy products. In fact, one of them has gone Vegan and hasn't had a flare up since.

When I meet other people with Crohn's I am always amazed to hear how their doctors instruct them to not bother making significant dietary changes. Based on my research and experience with those who have various bowel-related diseases, and despite what many doctors say, I have little doubt dairy and to some extent animal protein in general is the cause of Crohn's and other bowel complications.

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#19

Post by jerf » Wed, Sep 14, 2011, 12:27 AM UTC

mynameishere wrote: post #8

How is it I've heard of all kinds of largely non-existent (today) diseases like Cholera, Typhus, Typhoid, Scrofula, Gout, etc, but as soon as I got on the internet, everyone seems to have Crohn's, which I had never heard of pre-internet?

In addition to zerohp's point, other possibilities include improving detection ability and it being a "disease of civilization": http://en.wikipedia.org/wiki/Lifestyle_diseases

Re: I have Crohn's, an incurable digestive disease, and built Crohnology

#20

Post by seanahrens » Wed, Sep 14, 2011, 12:27 AM UTC

zerohp wrote: post #11

mynameishere wrote: post #8

How is it I've heard of all kinds of largely non-existent (today) diseases like Cholera, Typhus, Typhoid, Scrofula, Gout, etc, but as soon as I got on the internet, everyone seems to have Crohn's, which I had never heard of pre-internet?

People don't talk about it. I have two friends with it, and I knew both of them for years before they told me.

Zerohp is right. They don't. It is estimated there are 1.4 million people with Crohn's & Colitis in the United States. But because most people who have it don't talk about it, people go on suffering in silence.

One reason people don't talk about it is because it's not "dinner table conversation".