Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

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

blog.crohnology.com

Post reply on HN
Print view View original

61–70 of 79 posts

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

#61

Post by tomfakes »

spenrose wrote: post #50
seanahrens wrote: post #22

Earlier quoted context omitted.

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 benevolen…

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!

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

#62

Post by enjo »

briggsbio wrote: post #54

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 kn…

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

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

#63

Post by tomfakes »

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.

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

#64

Post by kefs »

briggsbio wrote: post #55
CWuestefeld wrote: post #40

Earlier quoted context omitted.

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 dat…

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.

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

#65

Post by 0x12 »

seanahrens wrote: post #27
malbs wrote: post #13

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 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 prob…

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.

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

#66

Post by roel_v »

0x12 wrote: post #65
seanahrens wrote: post #27

Earlier quoted context omitted.

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 prob…

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'.

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

#67

Post by malux85 »

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.

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

#68

Post by bpp198 »

malux85 wrote: post #67

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 m…

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

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

#69

Post by petdog »

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…

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.

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

#70

Post by trebor »

enjo wrote: post #62
briggsbio wrote: post #54

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 kn…

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.
Post reply on HN