For the curious, my next update is a rather large one including many more logging options, charts, and trends.
edit.. link to my app: http://market.android.com/details?id=com.kefsco.pooplog2
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.
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.
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)
I looked at the wikipedia page and I can't tie the disease to anything that you as a sufferer should be ashamed of.
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.
I applaud the effort, though. Crohn's is a terrible disease and it's great to see people taking proactive steps towards treating it.
Here's the link to his interview:
Apologies for the site it's hosted on, tons of ads and the interview is broken up into 10 pages.
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.
- 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
Step 1: observe one data point
Step 2: publish conclusion based on data point as definitive fact
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!
Congratulations on the launch, I'll be passing the link to a few people I know who battle Crohn's. Great work.
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 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.
As for me, diagnosed with Crohn's in 1987 (when I was seventeen). Symptoms currently under control, thankfully!
See here as a jumping off point for that: http://en.wikipedia.org/wiki/Medical_genetics_of_Jewish_peop...
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.
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.
His advice consists mainly of radical dietary changes and drinking Kangen water. FWIW.
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 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.
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.
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.
But I ended up joining another startup and no longer have time.
I'm happy to see someone doing something similar.
One reason people don't talk about it is because it's not "dinner table conversation".
I was thinking about building a similar site, and now I might not have to, so thanks! I'll tell my wife about it!