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.
I have Crohn's, an incurable digestive disease, and built Crohnology
21–30 of 79 posts
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#22I 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, on their own. But this diet really helps. It's similar to the Paleo Diet, if you've heard of that.
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#23Looks 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.
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#24This 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.
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#25Oh, 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.
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#26This 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?
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#27I 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 fir…
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.
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#28Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#29While 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.
Re: I have Crohn's, an incurable digestive disease, and built Crohnology
#30I 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.