I have Crohn's, an incurable digestive disease, and built Crohnology | Hacker News Reader

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

blog.crohnology.com

331 pointsseanahrens75 comments

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

Perhaps a social media element with picture sharing?

It integrates with other social apps on your phone!

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.

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.

This is correct, and PoopLog doesn't attempt to diagnose or interpret anything through the data. It simply acts as a way to conveniently track your bowel movements with the ability to export to a readable, and sharable, text-file allowing for easy analysis by a health practitioner. I do include links to helpful online resources within my help file though.

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!

Thanks :)

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

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.

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

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

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)

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.

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.

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'.

Soooo... how about adding IBS to the list?

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

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.

The ex-wife has UC. IBD is an awful condition and I wouldn't wish it on my worst enemy. Besides the embarrassing physical symptoms described by others (basically uncontrollable explosive bloody diarrhea) it takes a huge toll mentally and emotionally. It is a big embarrassing secret. Add in the why me questions, depression, self-esteem issues and your life becomes an unending roller coaster. Autoimmune conditions are weird. They flare and go away with no rhyme or reason. You can be fine one day and in the hospital the next. No Dr. knows what causes it and no Dr can fix it. The only treatment is trying different chemicals to find one where the treatment is not worse than the disease. Her current treatment of a once a month infusion costs her medical insurance $14k a month?! She is imprisoned by her medical insurance and worries about losing it every day. It is something little understood by healthy non chronic illness people. You need to work to have insurance, but when you are most sick, and sick a lot - you can't work. So fundamentally having health insurance attached to ability to work is just wrong. Someone can talk about their heart attack, or cancer, or diabetes and everyone gets it. Talk about IBD you get a blank look. Talk about the details and no one will ever bring it up again. If you try to stay general and say I have an autoimmune condition people also don't understand and think you have HIV/AIDS. It is tragic because a huge growing number of people suffer from a large spectrum of autoimmune disorders (prob caused by genetic predisposition and long term exposure to low level chemicals in plastic, herbicides, pesticides, etc...) that are prob related in some way but because of how the med establishment treats them separately, they never gain the traction or interest of the medical research community. So that equals no dollars and money mostly flowing towards newsworthy cause such as popular cancers, heart, diabetes etc. No one wants to find the cure for explosive bloody diarrhea. They want to save lives. Tragi-comic stuff. Very sad. On that uplifting note Kudos and thank you for creating something that can help. It is much needed since the disease symptoms and treatment are basically different for every person that suffers from it.

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.

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

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.

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.

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

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.

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.

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.

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!

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

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.

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.

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.

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.

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.

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!

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...

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.

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

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.

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

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

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

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)

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

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.

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.

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.

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.)

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.

Did the parasitic worms work?

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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".

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

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.

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.

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.

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.

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 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 =]

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

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

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

Thank you for building this.

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