L
Locke
Guest
does it get worse?
I was first diagnosed with chrons over a year ago. After a few months on meds, my only symptom (bleeding) stopped. At the 1 year colonoscopy, the doc said my intestines look beautiful and there is no trace of the ulcers. It has been a year with no symptoms. I assumed that this meant I had a minor form of the disease and it won't affect my life at all, other than having to take some meds if it ever acts up again. I went on with my life as before.
But, I just met this guy on the net (a totally unrelated board) who says he had the same experience as I had initially, but after a few years he was trying to kill himself to end the pain. He says the drugs he is taking for the disease cost $30k/year and he has needed several surgeries and opiates for pain. He also said everyone else he knows with the disease has it even worse!
Suddenly I am questioning my assumption that this is no big deal. Actually, that's an understatement. Right now I'm terrified and wondering if I should stop investing in my 401k and instead buy a ferarri and live it up now, because if it gets that bad I won't be able to hold down a job (to keep insurance), and Medicaid apparently requires you to liquidate all your retirement investments and possessions before it will pay for your care. Since college I've been investing a third of my rather high income in hopes of a very early retirement and life of leisure, but I now fear this disease will completely destroy my dreams. Perhaps I should get traveling and try to live a lifetime in the next few years so that I won't have any regrets by the time the disease makes my life no longer worth living...
So my question to the members of this board is: What are the chances of this disease remaining no more than an annoyance? What are the chances I am unemployable and suicidal from pain by age 30 like the guy I met is?
I can't find any data along the lines of "30% of patients lead normal lives with lengthy remissions and only minor flare-ups, while 70% of patients eventually need surgery and die young due to complications or suicide." I just want some kind of statistic so I can financially plan on either living a long, good life, or living fast and wild while life is still worth living.
And if nobody knows of a study on the subject, anything could help, such as "my doctor said..." or "most of my friends with this disease aren't really bothered by it..." etc.. I ask this question realizing that a board like this will be biased toward attracting people with worse-than-average outcomes, because people with no symptoms (like I have been) usually wouldn't bother finding message boards about the disease.
Thanks for any info. If only the medical world were required to publish detailed records like the investment world does, there would be less mystery about these disease, and finding the answer to my question would be as easy as looking at a company's balance sheet!
I was first diagnosed with chrons over a year ago. After a few months on meds, my only symptom (bleeding) stopped. At the 1 year colonoscopy, the doc said my intestines look beautiful and there is no trace of the ulcers. It has been a year with no symptoms. I assumed that this meant I had a minor form of the disease and it won't affect my life at all, other than having to take some meds if it ever acts up again. I went on with my life as before.
But, I just met this guy on the net (a totally unrelated board) who says he had the same experience as I had initially, but after a few years he was trying to kill himself to end the pain. He says the drugs he is taking for the disease cost $30k/year and he has needed several surgeries and opiates for pain. He also said everyone else he knows with the disease has it even worse!
Suddenly I am questioning my assumption that this is no big deal. Actually, that's an understatement. Right now I'm terrified and wondering if I should stop investing in my 401k and instead buy a ferarri and live it up now, because if it gets that bad I won't be able to hold down a job (to keep insurance), and Medicaid apparently requires you to liquidate all your retirement investments and possessions before it will pay for your care. Since college I've been investing a third of my rather high income in hopes of a very early retirement and life of leisure, but I now fear this disease will completely destroy my dreams. Perhaps I should get traveling and try to live a lifetime in the next few years so that I won't have any regrets by the time the disease makes my life no longer worth living...
So my question to the members of this board is: What are the chances of this disease remaining no more than an annoyance? What are the chances I am unemployable and suicidal from pain by age 30 like the guy I met is?
I can't find any data along the lines of "30% of patients lead normal lives with lengthy remissions and only minor flare-ups, while 70% of patients eventually need surgery and die young due to complications or suicide." I just want some kind of statistic so I can financially plan on either living a long, good life, or living fast and wild while life is still worth living.
And if nobody knows of a study on the subject, anything could help, such as "my doctor said..." or "most of my friends with this disease aren't really bothered by it..." etc.. I ask this question realizing that a board like this will be biased toward attracting people with worse-than-average outcomes, because people with no symptoms (like I have been) usually wouldn't bother finding message boards about the disease.
Thanks for any info. If only the medical world were required to publish detailed records like the investment world does, there would be less mystery about these disease, and finding the answer to my question would be as easy as looking at a company's balance sheet!