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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by LegWarmers on January 26, 2006, at 22:50:07
Im curious how people cope with being diagnosed with a lifetime progressive disease. How do you cope with the unknown? Or not so unknown, how do you cope with knowing that things are to come without panicking?
Posted by James K on January 28, 2006, at 11:44:10
In reply to Diagnosed, posted by LegWarmers on January 26, 2006, at 22:50:07
> Im curious how people cope with being diagnosed with a lifetime progressive disease. How do you cope with the unknown? Or not so unknown, how do you cope with knowing that things are to come without panicking?
---My diagnosis was Ulcerative Colitis around 4 years ago. I didn't cope very well, so this may be more negatative example than positive advice, but it does turn out okay.
I read everything there was to know about my disease. And tried to accept a lifetime of pain and embarrasement ending with colon cancer or a colostomy bag. Added to the stress of months of not being diagnosed, my own problems, and a bigger health crisis with my wife, I fell apart. I began to think about mortality, about disability, etc.
Now, I take 6 pills spread through the day and am essentially symptom free. I think it is important to understand the statistics and put yourself in the 90 percent that do well, not the 10 percent that don't. And we can cope. Some of us have been coping with the unknown much of our lives. A concrete diagnosis is something understandable and fightable. It can be a wake up call as well. To me it was just to take better care of the physical body. Some talk about getting their life right.
My wife had breast cancer. (totally cured with surgery). We just did what we had to. It was scary.
I hope any of this is helpful, and I hope your concern and/or diagnosis is not too bad.
James K
Posted by gardenergirl on January 28, 2006, at 17:45:47
In reply to Re: Diagnosed » LegWarmers, posted by James K on January 28, 2006, at 11:44:10
> ---My diagnosis was Ulcerative Colitis around 4 years ago.
Hi James,
I just wonder what you take. My husband has UC, and he is on immunosuppressants in order to control it. Any of the ASA-based (do I have that right?) meds made him worse. And he couldn't stay on Prednisone, obviously.gg
Posted by James K on January 28, 2006, at 23:10:24
In reply to Ulcerative colitis--tangent from Legwarmers sorry » James K, posted by gardenergirl on January 28, 2006, at 17:45:47
I take Asacol (that name makes me kind of mad) it's a 5 asa or something. I used to take sulfasalazine, which kind of worked a little better, but the sulfa part caused side effects.
These meds have done the trick for me. I haven't had to go to prednisone yet. Nasty drug.
I also take probiotics acidophilus, and Nitroplex a whey protein powder with glutamine and long chain amino acids and digestive enzymes and crap.
That's really for chronic fatigue syndrome, but it helps (in my opinon) my general health. I have an appointment in May with a big time local rheumatologist to check if both conditions aren't part of the same underlying disorder. My mother has rhem. arthritis.Has your husband had the prometheus blood test? Its the best test if there is any doubt between Chrohns and UC. The treatments can be different. Basically, I've been lucky on this. I wish your husband well.
James K
Posted by LegWarmers on January 29, 2006, at 0:08:11
In reply to Re: Diagnosed » LegWarmers, posted by James K on January 28, 2006, at 11:44:10
> ---My diagnosis was Ulcerative Colitis around 4 years ago. I didn't cope very well, so this may be more negatative example than positive advice, but it does turn out okay.
>
> I read everything there was to know about my disease. And tried to accept a lifetime of pain and embarrasement ending with colon cancer or a colostomy bag. Added to the stress of months of not being diagnosed, my own problems, and a bigger health crisis with my wife, I fell apart. I began to think about mortality, about disability, etc.
>
> Now, I take 6 pills spread through the day and am essentially symptom free. I think it is important to understand the statistics and put yourself in the 90 percent that do well, not the 10 percent that don't. And we can cope. Some of us have been coping with the unknown much of our lives. A concrete diagnosis is something understandable and fightable. It can be a wake up call as well. To me it was just to take better care of the physical body. Some talk about getting their life right.
>
> My wife had breast cancer. (totally cured with surgery). We just did what we had to. It was scary.
>
> I hope any of this is helpful, and I hope your concern and/or diagnosis is not too bad.
>
> James KThat sound like a lot to go through, Im so happy to hear about your wife and that you are doing better.
Mine's not great, it is something Im terrified of and I am young to have it, I dunno, just scared I guess.
Thanks for responding, I appreciate it, I was feeling really alone.
Posted by gardenergirl on January 29, 2006, at 14:52:32
In reply to Re: Diagnosed » James K, posted by LegWarmers on January 29, 2006, at 0:08:11
We're here for you however you need us.
gg
Posted by gardenergirl on January 29, 2006, at 14:56:33
In reply to Re: Ulcerative colitis--tangent from Legwarmers sorry » gardenergirl, posted by James K on January 28, 2006, at 23:10:24
> I take Asacol (that name makes me kind of mad) it's a 5 asa or something.
That's it! It's those 5 asa drugs that made him so much worse. And of course he had to try all the various iterations of them before they could figure that out. He lost a ton of weight during that time and was pretty miserable. Glad they work for you.
>
> I also take probiotics acidophilus, and Nitroplex a whey protein powder with glutamine and long chain amino acids and digestive enzymes and crap.I'll pass this along to him and see what he thinks. Thanks for sharing your routine.
>
> That's really for chronic fatigue syndrome, but it helps (in my opinon) my general health. I have an appointment in May with a big time local rheumatologist to check if both conditions aren't part of the same underlying disorder. My mother has rhem. arthritis.My husband's family has a number of significant autoimmune system diseases among them. I'm convinced that there is a general process to all of these disesases that must be heritable in some way. I hope your appt. goes well.
>
> Has your husband had the prometheus blood test? Its the best test if there is any doubt between Chrohns and UC. The treatments can be different. Basically, I've been lucky on this. I wish your husband well.He doesn't recall the Prometheus test, but his dx was determined based on his colonoscopy, and it seems correct. He's been very stable for a few years now, although I worry about the immunosuppressants. He used to never be sick with a cold or flu for more than a day and never missed work. Now he has a hard time kicking a cold. It scares me.
Thanks.
gg
Posted by ed_uk on January 29, 2006, at 15:07:30
In reply to (((((LegWarmers))))), posted by gardenergirl on January 29, 2006, at 14:52:32
Azathioprine and mercaptopurine are used to treat ulcerative colitis. Does your husband take one of these?
Ed
Posted by gardenergirl on January 29, 2006, at 20:24:53
In reply to Re: (((((LegWarmers))))) » gardenergirl, posted by ed_uk on January 29, 2006, at 15:07:30
> mercaptopurine
I think he takes this one. I'm not allowed to handle it at all, since I'm of childbearing age.
gg
Posted by LegWarmers on January 30, 2006, at 8:36:06
In reply to (((((LegWarmers))))), posted by gardenergirl on January 29, 2006, at 14:52:32
Posted by ed_uk on February 1, 2006, at 14:25:17
In reply to treating UC » ed_uk, posted by gardenergirl on January 29, 2006, at 20:24:53
Hi GG
The brand name for mercaptopurine is Puri-Nethol. Is that the one he takes?
Ed x
Posted by gardenergirl on February 1, 2006, at 17:22:16
In reply to Re: treating UC » gardenergirl, posted by ed_uk on February 1, 2006, at 14:25:17
Yep, but I believe he takes the generic version.
gg
This is the end of the thread.
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