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Would you be gutted if there was a cure, but it was too late for you?

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Posted 9/27/2015 12:47 PM (GMT 0)
Surely you must have not worded that the best. If they were to look for and find the root cause of IBD, more than likely they would have to produce or develop a "new drug" to cure us. I think autoimmune diseases are just so far over the heads of even the most knowledgeable that they concentrate more on what the do understand - the inflammatory process.
Posted 9/27/2015 1:09 PM (GMT 0)

garylouisville said...
Surely you must have not worded that the best. If they were to look for and find the root cause of IBD, more than likely they would have to produce or develop a "new drug" to cure us. I think autoimmune diseases are just so far over the heads of even the most knowledgeable that they concentrate more on what the do understand - the inflammatory process.

I worded it exactly how I meant to.
Posted 9/27/2015 2:11 PM (GMT 0)
Don't want to start a war but how exactly do you expect them to find a real cure without developing a new drug, unless you either think the cure is an existing drug or no drug at all? If the cure was an existing drug then more than likely we would already be cured and I don't see how they are ever going to find a cure without developing a drug. Maybe you're thinking that genetic engineering or manipulation is the cure and maybe you wouldn't need a drug for that. You don't seem to be the extremist type that believes in the natural and living your life in a protected bubble ideology, which hasn't stopped some of those from developing IBD anyway. I don't think you believe surgery is the cure, which is available now anyway. Scratching my head a little and I can't afford to lose any more hair.
Posted 9/27/2015 2:26 PM (GMT 0)
I would be thrilled they found a cure no matter when. I am not a person who looks over her shoulder and thinks "I wish things had been different". I think people that do that are setting themselves up for many regrets and little happiness.

There will always be people who have it better than me and many more who have it worse, no matter whether it's IBD or having a better/worse life due to choices they made or didn't make. Bloom where you are planted, this is the only life we have.

Happiness has nothing to do with how much you have (proven many times with studies) it is due entirely your point of view. I think one's POV may be genetic and reinforced by personal events so I don't blame those who point out the negative, that's valuable too. I don't want to socialize with "downers" but they have value as lawyers, accountants, insurance sellers, etc.

Regret and envy are basic human emotions. But they don't make for a happy life when they take precedence over contentment and happiness.
Posted 9/27/2015 2:38 PM (GMT 0)
I said the pharmaceutical companies aren't looking for root causes, not cures. The two things are different. Understanding the root causes may provide the knowledge which finally leads towards a cure; conversely, a cure may be found by pure trial and error without knowing why it works.

As it so happens, I don't think the pharmaceutical companies are motivated to find a cure for IBD either. Their main concern is to develop new and profitable drugs. It may be that one of these as of yet undeveloped drugs end up being the cure for IBD (or some types of IBD, since IBD is a pretty broad category), but if they do, that will be by pure chance and not design.

Edit: That was to Gary.
Posted 9/27/2015 2:41 PM (GMT 0)

imagardener2 said...
Regret and envy are basic human emotions. But they don't make for a happy life when they take precedence over contentment and happiness.

The trouble is, there's never any advice for dealing with 'bad' human emotions, other than stuff along the lines of 'well, don't feel them', 'choose happiness instead', etc. If I could do all that, I would have done it years ago. Just sayin'.
Posted 9/27/2015 3:19 PM (GMT 0)
NCOT
I think one's POV may be genetic and reinforced by personal events so I don't blame those who point out the negative, that's valuable too.

I get that you are someone in the negative POV spectrum, which may be part of your character and exacerbated by your health issues. I would never say "don't feel them", that is said by stupid people. My spouse is slightly on the negative side and his POV is a valuable balance to my "sunshine and rainbows". Neither of us is 100% positive/negative but in my case I know it's genetic to be optimistic even in the face of a really bad situation but I'm also a realist when push comes to shove.

I've read many of your posts and you are highly intelligent. I know many highly intelligent people who cannot change the way they see the world. You are aware that other people have an easier road mentally (even leaving UC out of it). Life is not fair. You say Life's a b**ch and then you die. I say Life's a beach and then you die. We're both right.
Posted 9/27/2015 3:20 PM (GMT 0)
I am a horrible, horrible person! Because there are a few people that I would wish to share this disease with, it would serve them right! See, i am a horrible person!

Iamcurious, i am so sorry about your brother. So sorry!

I think at the rate that people are getting it there might be a cure sooner than you think! They cured Hep C (@ 100k a pop) and that disease mutates!!!!

Stay positive, keep yourselves intact as long as you can have some quality! Its right around the corner.

Another thought is if you take out your colon your immune system will find something else to attack that may be harder to treat!
Posted 9/27/2015 4:24 PM (GMT 0)

ki-wi said...
Everything certainly is relative. But comparing ones own suffering to that of others is pointless, as your own suffering is only relative to your own life experience and no-one elses. Telling stories about how it "could be worse" isn't helpful at all and I'm surprised that someone with UC is giving another person with UC this kind of advice.



These are pretty much my words as well. I say them often to those who are well meaning and lack specific empathy.

Yes...things could be worse, but it doesn't mean the person feeling anguish cannot see others' situations or feel empathy. When do we ever reach that measurement or state of acceptance to gain understanding / empathy or does the measuring stick to others keep getting longer?

It's a matter of individual, subjective perspective...... a difficult place to be.

q
Posted 9/27/2015 4:38 PM (GMT 0)
ima - I get it from my dad. He's the only person I know who is even more pessimistic than I am. He not only jumps to the worst conclusion straight away, he spends ages thinking about things that might conceivably go wrong which no one else would give any thought to. At any rate, although it may not seem like it on here, I do really try to fight my own negativity. It's just that it's a constant struggle and poor quality sleep, dodgy stomach, stressful appointment, etc. can all set me back for the rest of the day :-/

Thanks for your compliment as well!

DMC2011 - There's a few people I have wished this disease on, just so they knew what it felt like. Not permanently - but long enough it actually makes an impact, i.e. a few days wouldn't do it.

I'm not convinced the Hep C cure has any bearing on IBD, but it's a great discovery all the same. Just hope it eventually comes down to an affordable price for everyone.

As for the immune system finding something else to attack, that does occasionally happen: people with IBD are already more prone to other autoimmune conditions as it is. (IB4 IBD isn't an autoimmine disease.) But if anything goes wrong after surgery, it's usually with the j-pouch itself. That's the weak spot, if you like. It's even been theorised that chronic pouchitis may be a type of IBD that isn't UC or Crohn's.

Edit: Quincy - agreed.
Posted 9/27/2015 4:53 PM (GMT 0)

IamCurious said...
I do actually feel like my life has been ruined.

Everything is relative.

The 40 year old lady who lived down the street from me was backing out of her driveway. Her only daughter was just learning how to walk and wanted to show mommy. Her husband screamed, she panicked and drove forward thereby running over her daughter twice. I have no idea how she will ever get over her daughter's death.

Or my younger brother. Just graduated from college with honors on track to a high-powered career when he was diagnosed with an inoperable brain tumor. Med torture and chemo for 10 years before he died. Several times he confided to me that he wanted to off himself save that he knew it would devastate our mother.

So there are worse things out there besides UC.

Wow...

Thank god you aren't a suicide lifeline volunteer.

I can imagine the conversion going something like this:

"I'm thinking of ending it all... help me."

"There are people more miserable than you are."

*click*

Suffering is suffering. It's not relative. It's universal, and everyone suffers the same way. My sense of empathy or compassion does not differentiate between a person who has ALS and a person who has IBD. It's like saying to that army vet it's okay that his legs got blown off because he isn't a quadriplegic.
Posted 9/27/2015 5:14 PM (GMT 0)
NCOT said:
He not only jumps to the worst conclusion straight away, he spends ages thinking about things that might conceivably go wrong which no one else would give any thought to.

I have someone in my life like this. He would give anything not to be that way and has tried but it's the way his brain is wired. I will assume that is the way your brain works too. There is a place for negative thinking. I want any surgeon I ever need to be like this, looking out for all possible problems and always wanting 100% success. But they would be very hard to live with.
Posted 9/27/2015 6:48 PM (GMT 0)

DMC2011 said...
Another thought is if you take out your colon your immune system will find something else to attack that may be harder to treat!

What?? That's a really broad statement and pretty misleading. I have no colon and nothing else is being attacked. I'm so much more healthy now than with my diseased colon in me. I speak for thousands of colonless people.

Sorry NCOT...don't want to interrupt your thread but I had to comment on this inaccuracy.
Posted 9/27/2015 8:26 PM (GMT 0)
I read it here on healing well, did u notice the question mark? But just because u didnt have that problem does not make it not true. The immune system is the problem.
Posted 9/27/2015 8:54 PM (GMT 0)
I think I would only be upset if somehow it turned out that the cure had been available to me but I didn't know about it or didn't investigate it at the time. If a cure is discovered in the future and it's a novel compound, I'll be happy that it's available for other people but I don't think it would bother me very much. What's done is done and I made the best decision I could have at the time.

That said, I think there are people in this thread and on this board who would benefit from a reminder that a huge amount of the research that goes into drug development is performed at non-profit institutions (e.g. universities) with non-profit research grants (e.g. NIH grants). The university wants prestige, Nobel laureates, better students, alumni donations, etc. Nothing about that leads to stifling of potential cures or an unwillingness to put effort toward curing disease. Even if you believe it's just "good business" that a pharmaceutical company wouldn't pursue a cure, there's a HUGE industry of non-profit researchers who want nothing more than to cure diseases (and if you can't believe it's based on altruism, you can at least believe it's because they want the fame and adulation of their field).
Posted 9/27/2015 9:11 PM (GMT 0)
DMC: I think part of the communication problem is that it wasn't a question mark, it was an exclamation point. This leads the reader to believe that it happens all the time whereas a question mark would make the reader question whether the statement was true or not.

While it isn't uncommon for a person with an autoimmune disease to develop another one (surgery or not), it's not really common either. With an autoimmune disease your immune system is making attacking antibodies to something specific, such as certain gut bacteria in our colons. If you were to take the colon out it is about impossible that these same antibodies would start attacking something that they were not programmed to attack in the first place.

This doesn't mean that at some point your immune system won't attack something else but it doesn't mean that it ever will either. The chances are actually relatively small. It would be an injustice to scare someone considering surgery when this is actually a pretty remote possibility. The chances of developing pouchitis would be infinitely greater than your immune system attacking something else.
Posted 9/27/2015 9:36 PM (GMT 0)
Yes it was supposed to be a question mark! Thank you!
Posted 9/27/2015 9:52 PM (GMT 0)

imagardener2 said...
I have someone in my life like this. He would give anything not to be that way and has tried but it's the way his brain is wired. I will assume that is the way your brain works too. There is a place for negative thinking. I want any surgeon I ever need to be like this, looking out for all possible problems and always wanting 100% success. But they would be very hard to live with.

It is, unfortunately. It's also too late in life for me to become a surgeon :-(

Pluot said...
That said, I think there are people in this thread and on this board who would benefit from a reminder that a huge amount of the research that goes into drug development is performed at non-profit institutions (e.g. universities) with non-profit research grants (e.g. NIH grants). The university wants prestige, Nobel laureates, better students, alumni donations, etc. Nothing about that leads to stifling of potential cures or an unwillingness to put effort toward curing disease. Even if you believe it's just "good business" that a pharmaceutical company wouldn't pursue a cure, there's a HUGE industry of non-profit researchers who want nothing more than to cure diseases (and if you can't believe it's based on altruism, you can at least believe it's because they want the fame and adulation of their field).

Well, this is where I don't really have the knowledge to answer you. You're probably right, but I'd have to research it and I'm not doing that at 11pm with my stomach in ruins. I'm interested enough I will see if I can find further info on it, though.
Posted 9/27/2015 10:08 PM (GMT 0)

Pluot said...
I think I would only be upset if somehow it turned out that the cure had been available to me but I didn't know about it or didn't investigate it at the time. If a cure is discovered in the future and it's a novel compound, I'll be happy that it's available for other people but I don't think it would bother me very much. What's done is done and I made the best decision I could have at the time.

That said, I think there are people in this thread and on this board who would benefit from a reminder that a huge amount of the research that goes into drug development is performed at non-profit institutions (e.g. universities) with non-profit research grants (e.g. NIH grants). The university wants prestige, Nobel laureates, better students, alumni donations, etc. Nothing about that leads to stifling of potential cures or an unwillingness to put effort toward curing disease. Even if you believe it's just "good business" that a pharmaceutical company wouldn't pursue a cure, there's a HUGE industry of non-profit researchers who want nothing more than to cure diseases (and if you can't believe it's based on altruism, you can at least believe it's because they want the fame and adulation of their field).

I wish this were true. Unfortunately, most of the prestigious universities are compromised and tainted by pharmaceutical money. Time did an excellent piece highlighting the issue here. If a university wants to make headlines in the IBD arena, it would only be through the help and funding from one of the top pharmaceutical companies. The grants often come from companies that have a specific direction they want the college to take, and the research would undoubtedly be biased in their favor. In other words, the search for the UC cure ended before it ever began.

Of Harvard's 8,900 professors and lecturers, 1,600 admit that either they or a family member have had some kind of business link to drug companies — sometimes worth hundreds of thousands of dollars — that could bias their teaching or research. Additionally, pharma contributed more than $11.5 million to the school last year for research and continuing-education classes. The Times covered these details in its stories and included the darning fact that during the November demonstration, a Pfizer employee was on campus photographing protesters with a cell-phone camera. Pfizer did not deny the account but contended that the employee did nothing wrong. (See the top 10 scandals of 2008.)
Posted 9/27/2015 11:10 PM (GMT 0)

DMC2011 said...
I read it here on healing well, did u notice the question mark? But just because u didnt have that problem does not make it not true. The immune system is the problem.

what question mark? I saw an exclamation point.
Posted 9/28/2015 1:58 AM (GMT 0)

ki-wi said...
comparing ones own suffering to that of others is pointless, as your own suffering is only relative to your own life experience and no-one elses. Telling stories about how it "could be worse" isn't helpful at all and I'm surprised that someone with UC is giving another person with UC this kind of advice.


quincy said...
These are pretty much my words as well. I say them often to those who are well meaning and lack specific empathy.
Yes...things could be worse, but it doesn't mean the person feeling anguish cannot see others' situations or feel empathy. When do we ever reach that measurement or state of acceptance to gain understanding / empathy or does the measuring stick to others keep getting longer?


guardian7 said...
Wow... Thank god you aren't a suicide lifeline volunteer.
I can imagine the conversion going something like this:
"I'm thinking of ending it all... help me."
"There are people more miserable than you are."
*click*
Suffering is suffering. It's not relative. It's universal, and everyone suffers the same way. My sense of empathy or compassion does not differentiate between a person who has ALS and a person who has IBD. It's like saying to that army vet it's okay that his legs got blown off because he isn't a quadriplegic.

You guys are completely missing the point. There is a huge difference between a disease that is manageable vs a death sentence that can only be temporarily postponed by enduring even more excruciating pain and suffering. Or a an irrevocable tragedy such as loss a child who was your pride and joy, without any hope of ever seeing her again.

Whether it is thru lifestyle changes, taking the milder meds, or even the “big gun” meds if needed, I consider myself fortunate that with this disease I feel I can control my destiny. Even after being forced into the worst case scenario, SURGERY, apparently there are those on the ostomy forum who are grateful to get their life back and can resume normal activity.

We are responsible for our own choices and I accept having to make the necessary adjustments and accommodations for this chronic disease. I refuse to wallow in self-pity or to live the rest of my life as a professional victim. And I am filled with compassion for those who are suffering but have no choices or options to choose from.
Posted 9/28/2015 2:41 AM (GMT 0)

Guardian7 said...

Of Harvard's 8,900 professors and lecturers, 1,600 admit that either they or a family member have had some kind of business link to drug companies — sometimes worth hundreds of thousands of dollars — that could bias their teaching or research. Additionally, pharma contributed more than $11.5 million to the school last year for research and continuing-education classes. The Times covered these details in its stories and included the darning fact that during the November demonstration, a Pfizer employee was on campus photographing protesters with a cell-phone camera. Pfizer did not deny the account but contended that the employee did nothing wrong. (See the top 10 scandals of 2008.)

$11.5 million per year may sound a lot to a layperson, but it is nowhere near enough money to sway the research goals of an entire institution. My university received more than 20 times this amount in research grants from the NIH this year, as did pretty much all of the major centers for biomedical research in the United States.

I do not deny that there are doctors who accept money from pharmaceutical companies and that it is enough to distort incentives and sometimes lead to suboptimal care (e.g. prescribing a drug too often), but there simply isn't enough money flowing out of pharmaceutical companies and into the major research universities to stifle the discovery of a novel cure.
Posted 9/28/2015 2:54 AM (GMT 0)
IAmCurious, i agree with you 1000%.

i have suffered with major depression since I was 18 years old. 25+ years of therapy and antidepressants have helped me function normally, even during difficult times. For those who feel hopeless, I highly recommend exploring therapy, and, if appropriate, drugs.
Posted 9/28/2015 3:29 AM (GMT 0)
There are personalities who learn to make lemonade out of lemons and who like lemonade and there are others who have no idea how to make lemonade, mainly because they don't like lemonade in the first place.

Thanks Pluot For explaining. I figured that was the case but you'll never change the minds of the conspiracy theorists who latch on to half truths and believe every little tidbit of them, twisting them into full blown distortions of what the whole truth really is, just as many people take tidbits out of the bible to prove their very lopsided views on a particular subject. Anyone can cherry pick facts to prove anything they want. I have an optimistic faith though that in most cases the only people these types convince are the ones who already feel that way in the first place.
Posted 9/28/2015 9:47 AM (GMT 0)

IamCurious said...
You guys are completely missing the point.

No, I'm not. You're projecting your ideas about IBD onto me; I don't agree with them. But don't worry about doling out your limited reserves of compassion to me - save it for the "deserving" suffering, if that's all you can manage.

garylouiseville said...
I figured that was the case but you'll never change the minds of the conspiracy theorists who latch on to half truths and believe every little tidbit of them

There are other ways of being an extremist...

Post Edited (NiceCupOfTea) : 9/28/2015 5:08:50 AM (GMT-6)

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