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

I have the opposite view but my surgery was years ago. After two years in a severe flare, and with no hope of getting well, I had surgery. Post surgery I have had 14 years of excellent health, I have my life back, and I can do what I love most, long distance hiking. I cannot imagine where I would be now if I had stayed where I was; unemployed for sure. I would also most like be depressed and living with my family.

Sue

If it makes you feel better, there won't be a cure in the pharmaceutical arena for a long, long time. Their goal is establish long term (and relatively ineffective) treatments that keep the profits rolling in. There honestly have not been many advances in the last 20-30 years, and I expect that trend to continue.

But IBD rates are increasing worldwide at unprecedented rates, and sooner or later people are going to be fed up. I think people will ultimately take matters into their own hands.

I will say that the few companies vesting in the microbiome are heading in the right direction by targeting the root cause, but those won't become mainstream treatments (see Mutaflor ban).

@Guardian - I'm inclined to agree with you about there not being a pharmaceutical cure for a long, long time, if ever. But there are other areas of research which perhaps might lead to a cure one day. I've been wondering how I would feel about it if a cure was announced in the next five years.

Honestly, I couldn't care less if there was a cure tomorrow (for myself......I would be thrilled for others) because my life has returned to the way it was before UC thanks to having surgery. So I'm good. A cure isn't on the horizon any time soon anyway.

garylouisville said...
There probably won't be a pharmaceutical cure for a long long time but it is ridiculous to suggest that the companies purposely don't find a cure so they can keep us on mtnc meds long term. That's just a wild conspiracy theory like the US government was behind 9/11 and we didn't go to the moon. Proof in point - the new Hepatitis drugs which are a cure and cost a kazillion dollars. The drug companies make plenty of money off that cure and would an IBD cure as well if they could find one. One company could corner the market and have a patented monopoly for many years to come, drowning them in so much money they would have to come up for air to breathe, not to mention fame, notoriety, and Nobel prizes.

1) It's not a conspiracy... it's a good business model. Heck, I'd do the same if my shareholders depended on patients needing medications to survive. In terms of UC, this means investing in more anti-tnf / anti-inflammatory medications rather than drugs adressing the microbiome. It's a solid business strategy, and one that will yield considerable profits in the long term.

2) Charging $84,000 for the hepatitis "cure" is just as profitable as ongoing remicade infusions.

3) There won't be a cure for IBD because everyone has their own specific pathology - no two pathologies will be the same, which is what makes the one sized fits all cure you are referring to useless. Some are generated by stealth pathogens that need to be wiped out, while others are possibly the result of microbial imbalances. I predict specialized FMTs will offer 60-70% cure rates in the future, but it's unlikely they'll charge an arm and leg for it.

Part of the problem is you can't find a cure for something unless you know what the root cause of it is first. That's still up for debate. So far about the only thing they know for sure is that with IBD there is inflammation so they make drugs to counter the inflammation.

garylouisville said...
Part of the problem is you can't find a cure for something unless you know what the root cause of it is first. That's still up for debate. So far about the only thing they know for sure is that with IBD there is inflammation so they make drugs to counter the inflammation.

I think the burgeoning scientific literature on the microbiome would indicate otherwise. We know that gut bugs or lack thereof mediate inflammation, and that should be a modest starting point. There's a reason why IBD incidence is as high as it is in antibiotic-happy countries.

I don't know about you, but I'm sure people are fed up of all these 5ASA or anti-tnf variations coming to the market. It's a classic case of drug companies rebranding old medications as new for quick profits.

Cure....I think it would be subjective regarding how salvageable one's colon would be or how much of one's colon is affected, etc.

A cure found doesn't mean it would be available for years or decades, and the word cure can have many different meanings.

would I be ticked if my colon was out and one found afterward? Probably not. But I have no experience with that to even go there at this time.

q

iPoop - I'd certainly like it if I could regrow my own colon. It's not a "cure", in the sense that the IBD would most likely attack it again. But still, I'd do that over having a stoma or j-pouch any day.

I don't really have anything else to add to my original post, sorry folks. I do actually feel like my life has been ruined.

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.

IAmCurious, I'm so sorry about your brother. Just wow. Your loss, and the other story, definitely puts things in perspective.

I don't think that UC has ruined my life and your post is a good reminder that there are much more terrible things that can happen.

I actually feel lucky that I have a disease that can be cured with surgery. You can't say that about ALS, many cancers, brain tumors, or paralysis, to name a few things.

I wouldn't feel bad at all if I had surgery and then the cure was discovered because I'm a person who needs to take action when there's a problem. I'd rather do something and face the consequences than do nothing. Since the consequences of having surgery aren't that big a deal (barring complications) it's a no-brainer for me.

Fortunately, my UC is been mild but I've already decided that I will not take Biologics and, if I start having regular accidents that can't be addressed with other medical options. The colon is coming out.

Uc stinks.
I don't wish it on anyone. So even if I was already without my colon I would want the others to be cured.
Also, I agree there are problems with pharmecutical companies. But you cannot say that they are delaying a cure only so they can make money. It is not a fair statement.
Yes they might not be as motivated because they make money on maintnence meds... But in a few years there will be more generic versions of mesalamines.