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.
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!
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.
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.
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.
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.
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!)
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.
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.
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 [email protected], 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!
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.
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.
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.
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.
[+] [-] kefs|14 years ago|reply
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
[+] [-] jevinskie|14 years ago|reply
[+] [-] CWuestefeld|14 years ago|reply
[+] [-] chopsueyar|14 years ago|reply
[+] [-] briggsbio|14 years ago|reply
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|14 years ago|reply
[+] [-] malbs|14 years ago|reply
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|14 years ago|reply
[+] [-] malux85|14 years ago|reply
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|14 years ago|reply
[+] [-] throwaway_314|14 years ago|reply
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|14 years ago|reply
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|14 years ago|reply
[+] [-] herbivore|14 years ago|reply
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|14 years ago|reply
[+] [-] petdog|14 years ago|reply
[+] [-] imperialWicket|14 years ago|reply
Congratulations on the launch, I'll be passing the link to a few people I know who battle Crohn's. Great work.
[+] [-] tomfakes|14 years ago|reply
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|14 years ago|reply
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.
[+] [-] seanahrens|14 years ago|reply
[+] [-] lylejohnson|14 years ago|reply
As for me, diagnosed with Crohn's in 1987 (when I was seventeen). Symptoms currently under control, thankfully!
[+] [-] cowkingdeluxe|14 years ago|reply
[+] [-] seanahrens|14 years ago|reply
[+] [-] lunchbox|14 years ago|reply
[+] [-] zzzeek|14 years ago|reply
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|14 years ago|reply
[+] [-] initself|14 years ago|reply
http://www.amazon.com/Enzyme-Factor-Hiromi-Shinya-MD/dp/0982...
His advice consists mainly of radical dietary changes and drinking Kangen water. FWIW.
[+] [-] jsarch|14 years ago|reply
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|14 years ago|reply
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|14 years ago|reply
[+] [-] seanahrens|14 years ago|reply
[+] [-] elliottcarlson|14 years ago|reply
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|14 years ago|reply
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.
[+] [-] Ihaveibd|14 years ago|reply