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

blog.crohnology.com

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

#41

Post by danudey »

elliottcarlson wrote: post #29

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…

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.

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

#42

Post by 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.

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

#43

Post by lylejohnson »

ethank wrote: post #6

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…

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!

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

#44

Post by 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.

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

#45

Post by elliottcarlson »

danudey wrote: post #41
elliottcarlson wrote: post #29

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…

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 f…

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.

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

#47

Post by jevinskie »

chopsueyar wrote: post #26
kefs wrote: post #12

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.wi…

Perhaps a social media element with picture sharing?

It integrates with other social apps on your phone!

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

#48

Post by seanahrens »

UncleOxidant wrote: post #46

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.

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

#49

Post by jevinskie »

kefs wrote: post #12

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.wi…

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!

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

#50

Post by spenrose »

seanahrens wrote: post #22
herbivore wrote: post #18

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 d…

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,…

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.
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