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Anyone else sometimes feel like they're keeping us sick?

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Posted 12/23/2011 8:32 AM (GMT 0)
quincy: this is a little off topic, but I noticed from your signature that you've got the same type of UC as me and have been maintaining remission with just the 5-ASAs. Is there any way I can talk to you about my flareup? This forum hasn't got private messaging so I don't know how to do this.
Posted 12/23/2011 8:42 AM (GMT 0)
You can start a separate thread specifically to me.

q
Posted 12/23/2011 12:16 PM (GMT 0)
As someone who had surgery, I do not consider it a cure because of the drastic nature of it (removing a major organ) HOWEVER I do consider myself cured of UC because it is completely gone now. Period. No colon-No UC.
Posted 12/23/2011 12:49 PM (GMT 0)

Malkavian said...
Perchance I'm bitter because people in my profession are constantly treated like supervillians?

It's not the researchers we're mad it - It's the Rx companies and doctors who seem to only care about lining their pockets, hence hindering development of any real treatments that might cure this disease.
Posted 12/23/2011 12:58 PM (GMT 0)
I don't get angry at the doctors nor the researchers. The doctors, in my opinion, are the middle man. They get the brunt of the dissatisfaction. Sure there are greedy docs but not all are the same. I truly believe that many doctors really want their patients to get well. Researchers are underpaid grunts. They are stuck in the middle of battle with lots of pressure to find the cure with very little money allocated for the purpose.

Who I do get angry at are the pharmaceutical companies. The sheer greed is what gets me. What they charge for these medicines are outrageous! I was in dire need of them early in my diagnosis, but I had no insurance and could not afford them. I really had to make a choice...meds for me for a month or food on the table for my kids...a no brainer.

In the USA, they charge crazy prices for these meds...I believe I read somewhere that there was a 150% mark up on most meds.
Posted 12/23/2011 1:04 PM (GMT 0)
Malkavian,

IMO, People in your profession are supervillains! They are NOT interested in truly helping those with IBD with a cure because that wouldn't serve their profit motive, so what do they do? They come up with expensive drugs (that come with LOTS of side effects BTW that sometimes require other drugs to treat) or find "new purpose" for other designer drugs they say help? Give me a break! Big pharma controls the doctors and it's a vicious cycle. Sickness and keeping us all sick is big business, big $$ profits - and it starts from the control of the food chain with mega-agriculture with GMO and pestiside foods, the grains they feed animals in the feed lots, the vaccines and hormones they give them to make them fatter and healthier (but which makes US very sick), and then how convenient that some of the same mega-corporations have a sister corporation that is a drug company so they can push drugs to "help" with diseases they've actually caused.

Why do you think they haven't found a cure for cancer? Because cancer is too profitable. Sad but true. And the same is true for all major, chronic diseases, including IBD.

As far as your statement that surgery is a cure for UC - that's beyond ridiculous!

Posted 12/23/2011 1:07 PM (GMT 0)
Wingzero,

I understand your frustration and anger at the system, a system that rewards sickness with big profits $$$, while we all continue to suffer.

ANd I quite agree with everything you've said.

Posted 12/23/2011 1:23 PM (GMT 0)
I love my doctor & my meds- I think the posters who have had bad experiences with doctors just haven't found one they can connect with, or work with, for whatever reasons. Shop around, maybe???? I agree with quincy- no one is making anyone take/buy prescription drugs. If one truly feels it's simply a way to get $$$ out of "us", then stop paying into "their" system. I can't stand this "us" versus "them" mentality either- honestly, some of the posts I read here... a lot of them sound crazy, no offense intended. But come on- the title of this thread?? Are you serious?!?!??!?!?! Funny too, so many of those who put down pharmacy companies are probably shelling out hundreds a month on "natural" supplements (according to sigs)- how are those companies any different than Pfizer, or any other big drug company? You think "they", the Jordan Rubins of the world really CARE about you & want YOU to feel well??? ha! What a laugh.
Posted 12/23/2011 2:30 PM (GMT 0)
     I haven't read all these posts, so forgive me if I am not on topic.  I disagree with the main heading....Do I feel like my doctor was keeping me sick?  Well, no I don't believe my doctor was "keeping me sick" to line his pockets, but, he did push Remicade for two years before I actually agreed to try it.  I know they get a kick back from the drug company because my neighbor works for the company that manufactures Remicade.  When I confronted her about the kick backs, she merely smiled...that was enough.  However, you have to trust your doctor enough to believe he is acting on your behalf.  Let's face it though, GI doctors make their money on treating the disease.  If we all decided to go out and get our colons removed they would be out of business.  Only after Remicade failed did my GI doctor mention surgery, but, with tongue in cheek.  I threw him for a loop when I said.."ok, I am ready."  However, he wasn't, so I did try Humira...that failed.  In his defense, he did his best with what he had to work with.  When push came to shove...when I made up my mind for surgery...he was extremely upset and said he felt like he failed me.  Oh well..

      I had to find a colorectal surgeon on my own and I have never returned to my former GI doctor.

Posted 12/23/2011 2:52 PM (GMT 0)

wingzero said...
I'm extremely jaded about doctors in general and I know my thoughts are a bit ridiculous, but in my 13 years of having UC I've never once felt like anybody gave a darn about truly helping me to feel better


Perhaps you would feel much better about your condition if you found a new GI with a good bedside manner and is more compassionate.

I would rather first prosecute the banksters in the financial system like Goldman Sachs who created the financial mess of 2008. Where is the Justice Dept? At least their transgressions are easily documented and once they are in jail perhaps that would be a good warning message to other businesses including Big Pharma.
Posted 12/23/2011 3:07 PM (GMT 0)
I think the bottom line here is that there just is no money to be made for a cure for this or any other disease. Granted an individual or a corporation may get an award or recognition for their break through and contribution to humanity, but that doesn't pay the research bills and expenses for finding a cure. It's the classic kunnundrum, who is going to take-on the expense of finding and developing a cure when there is no profit per-say to develop a cure. After all most of us choose to educate ourselves and pursue a line of work to enhance ourselves financially, and that is the incentive for most people, the financial reward, take away the reward and most people won't have the time to dedicate to the cause because they will need to provide financially for themselves and their families. In a capitalistic society, that's just kinda the way it is.

But there is always hope that there may be a maverick out there that will come to the rescue of humanity, it's happened before, though rare.
Posted 12/23/2011 3:08 PM (GMT 0)
No. I've never felt that way. I've also never felt that it's my fault, and if I just punished myself by giving up enough things it would go away. Sometimes things just happen. The universe aligns in a certain way, and stuff happens. I spend much more time being thankful that I don't have something worse and being happy about what I can do than trying to blame anyone or anything.
Posted 12/23/2011 3:44 PM (GMT 0)
I like your comment Judy, it's very zen about everything. I'd like to think that way as well but some days (like yesterday) just knock me down. It's difficult living with this disease when you don't feel like there is an end to everything in sight and doctors don't seem to care. It's hard for me not to get angry sometimes, especially when I feel like I'm just a profit for the Rx corps and such.
Posted 12/23/2011 3:46 PM (GMT 0)
I agree with what Sherry said. It isn't the fault of the researchers or the doctors, it is the pharmaceutical companies that are gouging people. I know my doctor would love to see me "cured", if she could cure me, she would. I have no doubt in my mind that she offers me everything she feels would be helpful (not to say she knows everything - she won't consider LDN).

I also think in some ways the government is responsible because they allow companies to gouge and they don't desire to help the people, they only desire to make a buck and they make it so difficult for medication to get approval. I understand it is unsafe to approve medication without thorough testing but some medicines should be available here, especially if similar formulations have been used for YEARS and years. I am currently taking a birth control pill that is not available in the USA and it makes absolutely no sense because it is the same medication that is available under a different name in the US minus one ingredient. It makes me so angry that I have to order from outside the country. Then again, it is cheaper to order without insurance from outside the country than it is to buy from the pharmacy in the US.

The insurance companies are also awful! I forgot to mention them in my list of evils.

Posted 12/23/2011 3:51 PM (GMT 0)

Eva Lou said...
Funny too, so many of those who put down pharmacy companies are probably shelling out hundreds a month on "natural" supplements (according to sigs)- how are those companies any different than Pfizer, or any other big drug company? You think "they", the Jordan Rubins of the world really CARE about you & want YOU to feel well??? ha! What a laugh.

I shell out maybe an extra $75 every 6 months for my supplements. I pay $800/mo for my Lialda. That to me is completely unreasonable.
Posted 12/23/2011 4:11 PM (GMT 0)
it's all about profit, everyone knows it, there is no way to defend pharma companies per se....You can't tell me that making Lialda is anymore diffucult to make than a bottle if Advil, and if I didn't have insurance it would be $874 a month for a bottle of Lialda (this is proven with generics)....I'm not saying they are keeping everyone sick, just there is no rush.
Posted 12/23/2011 4:15 PM (GMT 0)
My Asacol alone is $600 a month. In what universe is that a reasonable cost for something I have no choice in taking?
My GI has been great about samples, but I had him over-prescribe (something we all do -if your smart) just to make the drugs more affordable.
Sometimes I feel like a cash cow for these companies, but I do agree the doctors are just the middle men, the "big-pharma" are the real bad guys in this scenario.
I don't believe it's a vast conspiracy , but there is definitely something wrong when a patient is paying more for drugs than his mortgage and when I ask how long I'll need these drugs -the answer is always "for the rest of your life".
Posted 12/23/2011 4:38 PM (GMT 0)
There's a lot of anger here. All of you who gripe about pharmaceutical companies just being out there to rip you off should note that in the US (where I assume most of you live) a company is in business to make money. That's what they do. The researchers on their staff are not motivated by $$, they are scientists and chemists who love to solve problems and think about cool things to do with molecules and genetic engineering etc. etc. But the parent company is a profit motivated machine. What is your alternative? Would you like your tax dollars to provide more funding to the CDC or the NIH so that they could get into the business of designing, testing, manufacturing and distributing drugs? If you regret how much $$ your meds cost then buy some pharmaceutical stocks so you can participate in the profiteering. You can also modify your lifestyle to reduce the amount of meds you have to take (diet, exercise, rest, supplements etc.), switch to generics if possible or even consider surgery as a solution.

The idea of a cure, a scientific solution to our problem, is intriguing. The amount of science that would have to go into discovering that cure is large. LARGE. Think many years and $$$$$. That would be your taxes. The NIH and CDC are focused (appropriatly IMO) on solving big ticket problems like deadly viruses (vaccines for the mumps, measles, DTP, tetanus, etc. plus the flu) and widespread health issues (cancer, heart disease, AIDS) etc. Even though we suffer greatly, we are still only 1% or 2% of the general population. And yes, there are societal costs to our illness and perhaps we'll get to a better medical solution one day, but I don't see it happening soon.

If you would like to see more scientific research into nutritional solutions, or supplements, etc. then start a fundraising organization, get $$$ and put out a Request for Proposals for scientists to submit their research ideas to you for funding. That's how it works.
Posted 12/23/2011 4:42 PM (GMT 0)
I don't understand how people are paying 600 or 800 for 5ASAs. I would never pay that. I would order generic from Canada before paying that. I would also look into PAP programs. That's almost as much as some people's rent!
Posted 12/23/2011 4:44 PM (GMT 0)
I for one can't tolerate the generic for some reason. Ordering from Canada isn't much cheaper for Lialda, either. :\
Posted 12/23/2011 4:49 PM (GMT 0)

kazbern said...
There's a lot of anger here. All of you who gripe about pharmaceutical companies just being out there to rip you off should note that in the US (where I assume most of you live) a company is in business to make money. That's what they do. The researchers on their staff are not motivated by $$, they are scientists and chemists who love to solve problems and think about cool things to do with molecules and genetic engineering etc. etc. But the parent company is a profit motivated machine. What is your alternative? Would you like your tax dollars to provide more funding to the CDC or the NIH so that they could get into the business of designing, testing, manufacturing and distributing drugs? If you regret how much $$ your meds cost then buy some pharmaceutical stocks so you can participate in the profiteering. You can also modify your lifestyle to reduce the amount of meds you have to take (diet, exercise, rest, supplements etc.), switch to generics if possible or even consider surgery as a solution.

The idea of a cure, a scientific solution to our problem, is intriguing. The amount of science that would have to go into discovering that cure is large. LARGE. Think many years and $$$$$. That would be your taxes. The NIH and CDC are focused (appropriatly IMO) on solving big ticket problems like deadly viruses (vaccines for the mumps, measles, DTP, tetanus, etc. plus the flu) and widespread health issues (cancer, heart disease, AIDS) etc. Even though we suffer greatly, we are still only 1% or 2% of the general population. And yes, there are societal costs to our illness and perhaps we'll get to a better medical solution one day, but I don't see it happening soon.

If you would like to see more scientific research into nutritional solutions, or supplements, etc. then start a fundraising organization, get $$$ and put out a Request for Proposals for scientists to submit their research ideas to you for funding. That's how it works.

Yes, but there is a fine line between making money and exploiting people, this is such a political capitalistic argument and one of the problems why we have such a gap in American economic system

Also, Cancer and Heart Disease are the two biggest diseases in America, with the biggest ticket prices for their medicine. They find cures, pharma loses big money. They will never cure either of these diseases!

Post Edited (nightside of eden) : 12/23/2011 9:55:55 AM (GMT-7)

Posted 12/23/2011 4:59 PM (GMT 0)
I agree, nightside, that what we have in the US is a large gap between rich and poor. Even if our political system shifted to the left and tried to close that gap (which I fervently hope will happen in 2012!) the fact is that our economy is still capitalist and that means that there must be a profit predicted before any commercial enterprise will invest in potential solutions. If you were a researcher or manager of researchers you could not just ask your team to work for less pay because it was "good for the people." Everyone has to make a living. Do I think that pharmaceutical executives should make 142 times more than their workers? No. Will closing that gap make a difference for IBD patients? Probably not, because there's just not that many of us out there to make it worthwhile.

Cures for heart disease don't have to be expensive.  The solution starts by eating well from childhood, staying active and not smoking.  Those are cheap solutions.  It's hard to do that in the US because we are bombarded by cheap, unhealthy foods and we have work that keeps us sedentary.  Changes in our food have nothing to do with big pharma and everything to do with how we subsidize commodity crops and the oil business.

Cancer?  The research that's been done over the last 50 years has been astounding and tremendously beneficial to millions of people.  Is treatment expensive?  Yes.  Is it because big pharma is trying to exploit you?  I think not.

Posted 12/23/2011 5:33 PM (GMT 0)
Someone brought up the cost of using supplements (in comparrison to RX)....I spend 220.00 max, sometimes a little less for a year supply of the supplements and vitamins I have listed which works out to 18.33 a month....I get good deals and good quality supplements online at puritans....when you buy 2 and get 3 free, you can't go wrong. The majority of what I use it simple vitamins, the bee propolis and Omegas 369 ar the only supplements the rest is vitamins A,B,C, and D.

I don't kow what the motive really is with researchers, for the most part I believe they (and their team) want to find cures for diseases since that would be a huge reward for them professionally as well as personally I'm sure (and I'm not talking about money = reward, I'm talking the satisfaction of figuring out something that has been baffeling other researchers for years and years) I do think the big pharma companies are dirty though.

I've always kinda figured that even if they do find a cure for IBD, I'd expect it to have a pretty heafty price tag to it and a huge profit would still be made and afterall, with the genetic component attatched to IBD, the future of IBD will be plentiful and there will always be new patients that will need to drop big bucks to be cured of their IBD once it's been triggered for them. So it's not like finding a cure will end up making anyone broke (besides the patient LOL) in the pharma industry.

It's good to have a positive attitude living with a disease like this but in all honestly I don't believe anyone here has ever not been angry at some point and to some degree over getting sick with this horrid disease...and there's nothing wrong with admitting anger/bitterness towards the disease because it's human to have those feelings.
Posted 12/23/2011 5:37 PM (GMT 0)
Well said pb4.
Posted 12/23/2011 5:54 PM (GMT 0)

kazbern said...
There's a lot of anger here. All of you who gripe about pharmaceutical companies just being out there to rip you off should note that in the US (where I assume most of you live) a company is in business to make money. That's what they do. The researchers on their staff are not motivated by $$, they are scientists and chemists who love to solve problems and think about cool things to do with molecules and genetic engineering etc. etc. But the parent company is a profit motivated machine. What is your alternative? Would you like your tax dollars to provide more funding to the CDC or the NIH so that they could get into the business of designing, testing, manufacturing and distributing drugs? If you regret how much $$ your meds cost then buy some pharmaceutical stocks so you can participate in the profiteering. You can also modify your lifestyle to reduce the amount of meds you have to take (diet, exercise, rest, supplements etc.), switch to generics if possible or even consider surgery as a solution.

The idea of a cure, a scientific solution to our problem, is intriguing. The amount of science that would have to go into discovering that cure is large. LARGE. Think many years and $$$$$. That would be your taxes. The NIH and CDC are focused (appropriatly IMO) on solving big ticket problems like deadly viruses (vaccines for the mumps, measles, DTP, tetanus, etc. plus the flu) and widespread health issues (cancer, heart disease, AIDS) etc. Even though we suffer greatly, we are still only 1% or 2% of the general population. And yes, there are societal costs to our illness and perhaps we'll get to a better medical solution one day, but I don't see it happening soon.

If you would like to see more scientific research into nutritional solutions, or supplements, etc. then start a fundraising organization, get $$$ and put out a Request for Proposals for scientists to submit their research ideas to you for funding. That's how it works.

Honesty I think the anger is justified. Just because this is how America works doesn't mean it's right by any means. Getting angry and vocal about it in large numbers is the only way things will change, and it *needs* to change. Not just for IBD, but for all diseases - There needs to be less involvement by the Rx companies and more money going into funding research for the cure, not just into creating new meds. Yes meds buy us time and yes they have their place but I don't think it's unreasonable as a sick person to just want to feel whole again. We're all just crossing our fingers hoping that someday we'll get our "miracle" and not have to live with this embarrassing, depressing, and debilitating disease anymore.
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