
I have Crohn's, an incurable digestive disease, and built Crohnology - seanahrens
http://blog.crohnology.com/im-going-to-be-demoing-at-medicine-20-at-stan
======
kefs
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...](https://secure.wikimedia.org/wikipedia/en/wiki/Bristol_Stool_Scale)

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

~~~
jevinskie
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!

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

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

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

------
malbs
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)

~~~
seanahrens
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
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.

~~~
roel_v
One of the primary symptoms (in the people I know that have it, I don't know
all that much about it) is that it causes heavy cramps that require immediate
(as in, _right now_ ) sprints to the bathroom. I can imagine that it's not all
that comfortable talking to people about issues that require quite explicit
references to, eh, let's call it 'primary body functions'.

~~~
jpmc
It is much more than that. On a good day the only thing you have to worry
about is the sprinting. Then there is the very loud gurgling noise…almost like
your hungry but 100x louder and disruptive. Try sitting in a meeting when that
kicks up. Then there is the 10-12x trips to the bathroom and the issues with
rawness that comes with it. Don’t forget about the constant, and I mean
constant, pressure associated with having to go. It becomes very hard to
translate the pressure vs the real thing. This is one reason “they” recommend
carrying a backup set of clothes just in case. These are just some of the side
issues the real issues are the pain and cramping. During a flare you basically
shed the inner lining of your intestine. Painful, irritating and interesting
to pass. Your intestines are inflamed and you feel bloated in a weird way. You
feel full and eating is the last thing you want to do. Your diet shifts to low
residue foods which equates to nothing fibrous and could pass through a straw.
You get very tired as it is physically and emotionally draining. You don’t eat
because it hurts, you don’t sleep because you are getting up 2-3x a night to
go … or try to go. I could go on and on. In the end it’s unlike any other
disease. It has a huge impact on a very core function required to sustain
life. It is difficult to describe and convey to a healthy person. There is no
cure other than removal of the colon and the medications to get you by are
very expensive($850+ a month) and come with their own set of issues

~~~
jessriedel
For other's information: jpmc must be describing Ulcerative Colitis here, not
Crohn's disease. So little is known about the underlying cause of UC and
Crohn's that it's not clear that they are two distinct diseases; there appear
to be cases that border between the two, although there is definitely a bi-
modal clustering of symptoms. But, to my understanding, the characteristic of
UC that most clearly distinguishes it from Crohn's is that UC is confined to
the colon (large intestines), while Crohn's may effect the entire digestive
tract. So, removal of the colon is a life-altering but effective cure for UC.
On the other hand, removing the colon may be medically necessary for a patient
suffering from Crohn's, but it's certainly no cure.

------
malux85
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
That sounds like the kind of thing you should be posting on Crohnology.

------
throwaway_314
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.

------
waterside81
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...](http://www.everydayhealth.com/crohns-disease/pearl-jams-mike-
mccready-on-the-road-with-crohns/mike-mccreadys-life-with-
crohns.aspx#continue)

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

~~~
mossity
As always, the trick is to pretend you want to print it:
[http://www.everydayhealth.com/printview.aspx?puid=EB6220D4-B...](http://www.everydayhealth.com/printview.aspx?puid=EB6220D4-B40A-463C-B7AD-B2131BBFD9E2)

------
herbivore
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.

~~~
seanahrens
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.

~~~
spenrose
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.

~~~
tomfakes
I have been diagnosed with an auto-immune issue that has a single obvious
symptom and a bunch of long term, harder to track ones.

Several months ago, I was on a very low carb diet to lose some weight (which
worked!) and my obvious symptom went away after 10 days on this diet. Wow! Now
it's time to experiment to see what's up.

Here's what I've found - if I eat something 'bad', in 2 days time, my symptom
comes back. In 3 days it peaks, and it tails off over the next 4 days. This
makes it really tricky to isolate the specific food that is causing my primary
symptom.

So far, I've found the outer edges of my problem foods, but I need to find the
inner edges - is it sugar, or potatoes, or rice, or wheat, or beans, or beer,
or all of the above? This part is harder to test specifically, as there are
other things going on in my life at the same time, and I like eating out,
which can sabotage any in-progress test.

Overall though, this is a much better place to be than taking the $2000 per
month biologic injections that I've been prescribed for the rest of my life -
and it helps that the ultra-low carb solution provides better symptom relief
too!

~~~
spenrose
That's awesome -- and not an example of the thinking I find problematic.

------
imperialWicket
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.

------
tomfakes
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.

------
ethank
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.

~~~
lylejohnson
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!

~~~
hvs
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.

~~~
ethank
Actually it's my sister that has Crohn's. My wife's brother doesn't have it
and neither do I.

------
cowkingdeluxe
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.

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

~~~
cowkingdeluxe
[http://blog.crohnology.com/im-going-to-be-demoing-at-
medicin...](http://blog.crohnology.com/im-going-to-be-demoing-at-
medicine-20-at-stan)

~~~
seanahrens
hm, working from San Francisco. I'll keep my eye on it though. Thanks for
letting me know.

~~~
whakojacko
not working for me either (Also SF). From here, blog.crohnology.com CNAMEs to
sfibd.posterous.com, but that doesn't work for reason's unknown to me (IP
returned is 184.106.20.99)

------
lunchbox
Similar concept to PatientsLikeMe: <http://www.patientslikeme.com/>

------
zzzeek
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.

------
Mz
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.

------
initself
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...](http://www.amazon.com/Enzyme-Factor-Hiromi-Shinya-
MD/dp/0982290039/ref=sr_1_1?ie=UTF8&qid=1315957313&sr=8-1)

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

------
jsarch
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.)

------
rmb177
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.

------
UncleOxidant
Did the parasitic worms work?

~~~
seanahrens
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.

------
elliottcarlson
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
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.

~~~
elliottcarlson
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.

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

------
robchez
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.

------
Klonoar
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.

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

------
postscapes1
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.

------
dmix
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.

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

~~~
seanahrens
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".

------
kevin_morrill
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.

------
whakojacko
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.

~~~
seanahrens
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.

------
jastuk
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.

------
ensignavenger
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!

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

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

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

------
ridave
Thank you for building this.

