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Comment by malbs | Hacker News Reader

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)

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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.

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'.

Soooo... how about adding IBS to the list?

It is much more than that. On a good day the only thing you have to worry about is the sprinting. Then there is the very loud gurgling noise…almost like your hungry but 100x louder and disruptive. Try sitting in a meeting when that kicks up. Then there is the 10-12x trips to the bathroom and the issues with rawness that comes with it. Don’t forget about the constant, and I mean constant, pressure associated with having to go. It becomes very hard to translate the pressure vs the real thing. This is one reason “they” recommend carrying a backup set of clothes just in case. These are just some of the side issues the real issues are the pain and cramping. During a flare you basically shed the inner lining of your intestine. Painful, irritating and interesting to pass. Your intestines are inflamed and you feel bloated in a weird way. You feel full and eating is the last thing you want to do. Your diet shifts to low residue foods which equates to nothing fibrous and could pass through a straw. You get very tired as it is physically and emotionally draining. You don’t eat because it hurts, you don’t sleep because you are getting up 2-3x a night to go … or try to go. I could go on and on. In the end it’s unlike any other disease. It has a huge impact on a very core function required to sustain life. It is difficult to describe and convey to a healthy person. There is no cure other than removal of the colon and the medications to get you by are very expensive($850+ a month) and come with their own set of issues

For other's information: jpmc must be describing Ulcerative Colitis here, not Crohn's disease. So little is known about the underlying cause of UC and Crohn's that it's not clear that they are two distinct diseases; there appear to be cases that border between the two, although there is definitely a bi-modal clustering of symptoms. But, to my understanding, the characteristic of UC that most clearly distinguishes it from Crohn's is that UC is confined to the colon (large intestines), while Crohn's may effect the entire digestive tract. So, removal of the colon is a life-altering but effective cure for UC. On the other hand, removing the colon may be medically necessary for a patient suffering from Crohn's, but it's certainly no cure.

The ex-wife has UC. IBD is an awful condition and I wouldn't wish it on my worst enemy. Besides the embarrassing physical symptoms described by others (basically uncontrollable explosive bloody diarrhea) it takes a huge toll mentally and emotionally. It is a big embarrassing secret. Add in the why me questions, depression, self-esteem issues and your life becomes an unending roller coaster. Autoimmune conditions are weird. They flare and go away with no rhyme or reason. You can be fine one day and in the hospital the next. No Dr. knows what causes it and no Dr can fix it. The only treatment is trying different chemicals to find one where the treatment is not worse than the disease. Her current treatment of a once a month infusion costs her medical insurance $14k a month?! She is imprisoned by her medical insurance and worries about losing it every day. It is something little understood by healthy non chronic illness people. You need to work to have insurance, but when you are most sick, and sick a lot - you can't work. So fundamentally having health insurance attached to ability to work is just wrong. Someone can talk about their heart attack, or cancer, or diabetes and everyone gets it. Talk about IBD you get a blank look. Talk about the details and no one will ever bring it up again. If you try to stay general and say I have an autoimmune condition people also don't understand and think you have HIV/AIDS. It is tragic because a huge growing number of people suffer from a large spectrum of autoimmune disorders (prob caused by genetic predisposition and long term exposure to low level chemicals in plastic, herbicides, pesticides, etc...) that are prob related in some way but because of how the med establishment treats them separately, they never gain the traction or interest of the medical research community. So that equals no dollars and money mostly flowing towards newsworthy cause such as popular cancers, heart, diabetes etc. No one wants to find the cure for explosive bloody diarrhea. They want to save lives. Tragi-comic stuff. Very sad. On that uplifting note Kudos and thank you for creating something that can help. It is much needed since the disease symptoms and treatment are basically different for every person that suffers from it.

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