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

http://blog.crohnology.com/im-going-to-be-demoing-at-medicine-20-at-stan

by seanahrens • 15 years ago

331 75 15 years ago

blog.crohnology.com

Awesome site. My wife has Crohn's and I've been thinking how nice it would be to have a site like this. We'll try it out. Also the link in the title is busted, but just going to the domain works.

seanahrens9• 15 years ago

Many thanks! I'm happy to have, help, and learn from her. Which link are you referring to?

cowkingdeluxe2• 15 years ago

http://blog.crohnology.com/im-going-to-be-demoing-at-medicin...

throwaway_314• 15 years ago

As a Crohn's sufferer, It's rare that I come to HN and see something so closely targeted to me! One thing that makes me a bit nervous, though, is the social nature of the site. I tend to be pretty private about my illness, and only my closest friends know I have it. Have you considered the privacy implications of the site? I'd be worried that information about me and my condition might leak onto the internet, and the homepage doesn't really mention it.

I applaud the effort, though. Crohn's is a terrible disease and it's great to see people taking proactive steps towards treating it.

ethank3• 15 years ago

My wife, sister, dad and aunt have Crohn's. This will be great for them. My wife when she was first diagnosed at 19 was desperate to find information online about the disease. In fact, we were setup on a blind date and these posts are what I first found during my requisite Google :)

My aunt is dying of complications related to the disease while my dad, wife and sister have it under control.

I'll be sending it to all of them.

seanahrens9• 15 years ago

Thank you so much. I'm sorry to hear about how pervasively this disease has affected your family. But I'm glad to be working to produce something that may help. Email me at beta@crohnology.com, and I'd love to have them a part.

lylejohnson• 15 years ago

I've never heard of a situation like yours where so many family members are affected. If I may ask, is the aunt you refer to your Dad's sister or your Mom's?

As for me, diagnosed with Crohn's in 1987 (when I was seventeen). Symptoms currently under control, thankfully!

ethank3• 15 years ago

It's my dad's sister. Crohn's can be genetic and it seems to be more common in Eastern Europe (Ashkenazi) descendent Jews.

See here as a jumping off point for that: http://en.wikipedia.org/wiki/Medical_genetics_of_Jewish_peop...

hvs• 15 years ago

Crohn's is a bit odd genetically. While having a parent with Crohn's increases your chances by 2-3x's, having a sibling with Crohn's increases your chances 20-30x's. So, it's not surprising that your wife and her sister as well as your dad and his sister have it. There's a strong correlation in siblings. There are so many genes associated with Crohn's, though, it's hard to pin it down.

I was diagnosed with Crohn's seven years ago at the age of 28 and both of my siblings have started to develop similar symptoms over the past couple of years.

initself• 15 years ago

Hiromi Shinya, the inventor of colonoscopy, has had success with Crohn's patients throughout his career:

http://www.amazon.com/Enzyme-Factor-Hiromi-Shinya-MD/dp/0982...

His advice consists mainly of radical dietary changes and drinking Kangen water. FWIW.

mynameishere• 15 years ago

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?

zerohp• 15 years ago

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

seanahrens9• 15 years ago

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".

jerf• 15 years ago

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

kefs3• 15 years ago

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

chopsueyar• 15 years ago

Perhaps a social media element with picture sharing?

jevinskie2• 15 years ago

It integrates with other social apps on your phone!

CWuestefeld• 15 years ago

I've had Crohn's since I was 12, and have often contemplated creating a tool to help others track their diet and activity, to look for correlations. I've not done so because I was afraid of either (a) FDA interfering, since it's medical-related; or (b) liability in case there was a bug.

briggsbio2• 15 years ago

CW, there's nothing wrong with an app that collects and tracks diet, activity, or other information (until you get into data from instrumentation devices and more complex data inputs). Diet exercise are fine. Symptoms are fine. Even reporting them are fine (analytics). The issue becomes the key word: correlating. The FDA's (currently incompletely addressed) stance is that as long as you don't DO anything with the data, you're golden. "observe and report," so to speak.

Once you actually try to interpret (read: do anything interesting with) the data, you hit a regulatory wall. Well, regulatory hurdles, but not inconsequential (21 CFR part 11 compliance, quality systems, documentation well beyond anything the average developer is used to, etc.). Hurdles, but not complete roadblocks. So excite for some of the stuff in the works. Particularly looking forward to massiveHealth, but haven't seen anything since the funding a while back and details were nonexistent. I had some preliminary work on a great product and even a trial designed and ready to roll, and all the regulatory work (my bailiwick) lined out. But didn't get the grants funded. Sadly, I shelved it.

jevinskie2• 15 years ago

I just want you to know that PoopLog is one of the finest apps I've encountered on Android. Seriously, it has a great look n feel! You really can polish a turd!

kefs3• 15 years ago

Thanks :)

petenixey• 15 years ago

@Trevor - NB that gilded turd may not always be a bad thing..

malbs• 15 years ago

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)

seanahrens9• 15 years ago

Malbs, as you allude to, it can be a hard leap to start openly telling people you have Crohn's or Colitis. It's not easy to lash your personal identity to the disease. Believe it or not, I've gone through a personal struggle with this myself. For Crohnology to work, it was required for me to wear the badge really clearly, so to speak. What I think is that telling people unabashedly that you have the condition is probably almost like coming out (just a guess). It's incredibly empowering and allows you to leave lots of personal shame and suffering behind, and join a whole new community of like people. It's really uplifting.

0x12• 15 years ago

Why is this? Sufferers of other diseases have no such problems, what is it about Crohns' disease that makes people shy to talk about it?

I looked at the wikipedia page and I can't tie the disease to anything that you as a sufferer should be ashamed of.

kevin_morrill• 15 years ago

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.

Klonoar• 15 years ago

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.

seanahrens9• 15 years ago

I really appreciate that. It wasn't easy choosing this path for sure, for exactly the reasons you mention.

jsarch• 15 years ago

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.)

waterside81• 15 years ago

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.

mossity• 15 years ago

As always, the trick is to pretend you want to print it: http://www.everydayhealth.com/printview.aspx?puid=EB6220D4-B...

herbivore• 15 years ago

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.

seanahrens9• 15 years ago

herbivore, I don't consume any liquid dairy (as a part of the Specific Carbohydrate Diet). And it certainly helps. I could possibly imagine that my health could improve even more if I avoided all dairy, but there are so many things out of my diet as is. The main things I have eliminated from my diet are grains and refined sugars. I eat none of those. These two restrictions eliminate about 80% of most grocery stores, on their own. But this diet really helps. It's similar to the Paleo Diet, if you've heard of that.

spenrose2• 15 years ago

I know a U.C. sufferer who is doing much better after making ... no dietary changes at all. Please don't take this the wrong way, but intermittent chronic diseases (such as auto-immune disorders like Crohn's and U.C.) might as well be designed to take advantage of the broadly recognized weaknesses of the human mind:

    - the perception of pattern where none exists
    - a preference for causal narratives involving benevolent and malevolent agents
    - a preference for simple certainty over complex uncertainty
    - broadly, a sense that you are in control

I am not saying anything about the two of you as individuals or as patients, or about the content of your posts here. But the standard of evidence and reasoning that I have encountered elsewhere trying to get a grasp on U.C. is ... not high. There are many "qualified" people (lifelong UC sufferer with an MS in nursing, etc.) who stopped eating gluten when they were 14, saw their symptoms shortly thereafter, and now push checklists asserting that every fellow patient should stop eating gluten.

    Step 1: observe one data point
    Step 2: publish conclusion based on data point as definitive fact

Ambiguity and uncertainty are unpleasant and, when the stakes are high, scary. But false certainty in the face of high stakes appeals to me not at all.

petdog• 15 years ago

Well, I can tell you that eating beans (pretty much required for a vegan?) and cabbage hurts like hell. In fact anything that is a little too gassy. Eating a lot less tomatoes helps too. Milk is annoying, but not cheese, and especially not yogurt. I think yogurt actually helps you. I have no problem with meat, except when it's too bloody.

whakojacko2• 15 years ago

Looks like a great site. I'm very fortunate that my Crohn's is doing well enough that I'm not particularly looking for more information, but I'm very happy to help others.

seanahrens9• 15 years ago

Thank you so much. I think there are two sides of the spectrum: patients that are in dire need of help and information, and patients that are 'veteran' and have a lot more information to give. I think these two sides of the spectrum actually work really well in concert. Experienced patients helping new and sick ones. I think both of these groups get a lot out of that interaction. It's really empowering to help others, especially when they really need it.

robchez• 15 years ago

This is great. My uncle had horrible chrons disease and is managaing it well with his diet (no grains/legumes and plenty of probiotics from Kefir)

Really great.

jastuk• 15 years ago

Oh, wow. Didn't really expect to see something like this here. I have crohn's, so I'm very much interested in such projects. I'll definitely be giving it a try.

elliottcarlson2• 15 years ago

While I don't know anyone with Crohn's, it's great to see resources becoming available to patients made by people who understand what they are going through.

To slightly "thread-jack" - a former co-worker of mine recently launched ihadcancer.com and made it with her personal experience with cancer as her motivator. I hope sites like yours and hers can help plenty of people out there deal with their situation and find support and advice from others.

danudey• 15 years ago

Honestly, I'd be careful saying something like that. Given that it's a disease involving the intestines, most people don't want to hear about it, and thus most people with the disease don't typically talk about it unless asked - and so a lot of people who have it don't mention it at all. It wasn't until I was diagnosed with the disease that I ever found out the people that I know who had it (and, in turn, my mother found out her friends who had it, or their sons, etc.).

Likewise, I don't generally tell people - it's not usually relevant to discussions, and no one really wants to hear about it. Chances are you know people who have it, but they've just never said so.

elliottcarlson2• 15 years ago

I can completely understand that - I guess I should have said that I am unaware of anyone with Crohn's; just as I am unaware of other conditions people might have. You are right that it would be foolish to assume you know someone based on their exterior alone and it's probably better to be sensitive to that possibility at all times.

imperialWicket• 15 years ago

It is so nice to see someone using technology to create something genuinely productive. You have a somewhat small target audience, but they have (as you rightly point out) very few alternatives when it comes to finding information about the disease and options for trying to aid in controlling it.

Congratulations on the launch, I'll be passing the link to a few people I know who battle Crohn's. Great work.

ridave• 15 years ago

Thank you for building this.

mathattack• 15 years ago

Wow - what a great use of talent! Turning lemOns onto lemonade is very cliche, but it applies here.

alexknight• 15 years ago

This sounds like an amazing project. My grandfather had Crohn's. I wish he was still alive today to see this.

lunchbox• 15 years ago

Similar concept to PatientsLikeMe: http://www.patientslikeme.com/

dmix• 15 years ago

I was diagnosed with ulcerative colitis earlier this year and was building something similar to this a few months ago. It was focused on the sharing the optimal medication treatments.

But I ended up joining another startup and no longer have time.

I'm happy to see someone doing something similar.

Mz• 15 years ago

Congratulations. I hope this is wildly successful. I have a different condition which significantly impacts the gut (cystic fibrosis). On the one hand, I got a lot of good info from people I met online and from one online community in particular which helped me figure out how to get myself well. On the other hand, the online CF community has been rather unwelcoming of me. I wish you continued good reviews and warm welcomes wherever you go.

postscapes1• 15 years ago

Thanks for building this, and good luck with the launch! My wife just got diagnosed with UC and the other web resources on line (mainly forums) have been good but obviously lack any kind of consistency and ability to quickly scan treatments, etc like your site can.

UncleOxidant• 15 years ago

Did the parasitic worms work?

seanahrens9• 15 years ago

Maybe. I tracked my symptoms for a year, starting when taking the worms. My symptoms got really rough after taking the worms, but I don't have a lot of baseline data for how rough my symptoms were prior to taking them. I gave a presentation on this experiment at the Quantified Self Conference 2011 in Mountain View. A blog post is certainly due.

rmb177• 15 years ago

I just signed up and am really looking forward to checking it out. Thanks for creating the site!

I was diagnosed with Crohn's in 1998 when I was a junior in college. I had surgery about 8 years ago and my life has been great ever since. I went from pretty serious flare-ups every 3-4 months, to one relatively minor flare-up since the surgery. I find that stress is a pretty large trigger so I try to be aware of when I need to take a step back and relax. Since the surgery, I've been able to eat pretty much whatever I want, but have been recently experimenting with a Paleo diet for both Crohn's and general health benefits.

zzzeek• 15 years ago

Curious, the platform the site is constructed upon could be repurposed to work for other disease communities as well? There's hundreds of other conditions (a few of which I have) which seem like they'd fit just fine within this layout.

Perhaps there are widgets here that are specific to crohns, though a plugin-oriented architecture could allow other disease specific sites to have their own widgets. Certainly "meet people near you with XYZ" and "Current treatents/diet" widgets are of general use.

briggsbio2• 15 years ago

From someone working at a tiny venture-backed biopharma startup focused on developing treatments for inflammatory bowel disease (IBD = UC + Crohn's), amazing to see something like this. Exciting. Even cooler to see it hit HN!

I've always looked at IBD and thought something that looked almost like PatientsLikeMe but had a specific focus geared towards IBD (and features that the other lacked) would be amazing. But I knew despite being "close to the problem," I could never build a product that IBD patients would want. I may be close to the research, the treatments, the literature, our lab, and clinicians (and have family with the disease), and even some patients, it wouldn't be enough. It took YOU, Sean. Successful entrepreneurs (and pundits) always talk about "scratching your own itch," and "feeling your customers pain." But just speaking to potential customers won't cut it. You can never understand war from reading books or talking to vets - you have to have seen battle to truly understand. That's easy if you're developing some apps, many meet a need someone has had. But an app like this?

For a product like this to be realized, quite possibly even an experienced clinician would have a perspective and solution that would theoretically be feasible and valuable, but not click with users. No one, for better and worse, in this case, is closer to the problem than you are, more motivated to fill that need, or better positioned to see through the multifaceted but singular perspective as a Crohn's patient.

Best of luck in building and growing Crohnology.

enjo• 15 years ago

God bless you. As a sufferer, some end to this madness would be really huge:)

trebor• 15 years ago

I and several family members have had success with http://www.gaps.me/ which is a variation of the Specific Carbohydrate Diet.

ricefield• 15 years ago

I was in this guy's UI design class when he was working on this project. Really glad to see him step onto the big stage =]

skcin7• 15 years ago

Congrats, sir. That is awesome. I also have Crohn's, and am still developing feverishly as well. More power to ya.

Ihaveibd• 15 years ago

http://www.crohnsforum.com has been around since like 2006 and is pretty dominant in this vertical.

tomfakes2• 15 years ago

In 1985 I was diagnosed with 'crohn's disease' and spent most of that summer in and out of hospital - I watched Live Aid on a hospital TV!

After a bunch of stuff failed, they eventually opened me up and whipped out 2 feet of intestine that turned out to be malformed - so probably no crohn's disease at all.

This does cause a number of interesting day-to-day issues even now!

It seems that there are a bunch of other problems that can occur with intestine problems. I currently have been diagnosed with Ankylosing Spondilitis that I am able to control with my diet (which may indicate that it's something else)

The connection between intestinal disorders and auto-immune issues seems to be growing stronger. Maybe something to watch out for.

malux85• 15 years ago

Sort of related: I was incorrectly diagnosed with Chrones disease about a year ago, but I was reading online and something just didn't seem right (not a 1:1 match of symptoms etc) but there was always a 'gut feel' (forgive me) is wasn't Chrones.

I bleeted and bleeted and bleeted until they also ran a SeHCAT test, and found out my body was not re-absorbing bile salts like it should be ... the bile was making it into my large intestine and causing it to cramp, which was the pain I was experiencing ... I now take 6 pills in the evening (Cholestagel) and I am almost cured. I think everyone that is suspected of having IBD/IBS/Chrones should get the SeHCAT test done just in case ... turns out my sisters diagnoses of IBS was also bile salt malabsorption .. mis-diagnosed (the same as me) on the other side of the planet.

bpp198• 15 years ago

That sounds like the kind of thing you should be posting on Crohnology.

ensignavenger• 15 years ago

This is awesome. My wife has Ulcerative Colitis.

I was thinking about building a similar site, and now I might not have to, so thanks! I'll tell my wife about it!

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

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