Average person that lives a full life with UC?

I do note that may of the stats about lifetime risk of eventual surgery have to draw over recent decades. But several decades ago, not as many drugs, alternative info, or options. I think the risk over the NEXT 30 years for someone diagnosed in the last few years is lower, but I do not have the math/stats to prove that. Just my reasoning. Besides, these forecasts have no way to factor in new treatments coming online over the next few decades.

Also, even the 30% figure means 70% chance of no surgery, so that is the more likely outcome. The figures also contain the folks who had surgery within 2 years of diagnosis because nothing controlled the UC and they were in the hospital on IV steroids and dying. So if you got a lifetime risk of surgery for those who manage to tame their initial flare, well that would be lower, but I don't have the raw data to work out how much lower. But LOWER is good.

As an aside, I was reflecting recently that we really resist the idea that removing the colon is a cure for UC. I think it is because there is an image of amputated or disabled. But removal of breast tissue is considered a cure for breast cancer, and removal of gallbladder is considered a cure for gallstones. I don't really have a point here. I was just reflecting that for some illness, tissue is removed and people don't argue over whether that treatment was a "cure". Not the case with colons. It is about more then the tissue.

As a thought experiment, if UC only occurred in the transverse colon, and a recognized treatment was to resect the transverse colon, with only some soft stool consequences, I think many many people would be taking that treatment. I think it is the extent of the surgery(s) and the psychology of an ostomy (when one is involved).

Anyway, I've calmed down a lot about the idea that one day I will be old and wearing a bag.

good stuff db - thanks -

 

It's pointless to argue over numbers unless you provide your sources.

Here's a relatively recent article from the New York Times (2008), which is not generally known as a scientific research publisher but does have some good journalistic chops. Their reported probability of a surgical treatment for UC is 20%: http://www.nytimes.com/ref/health/healthguide/esn-ulcerativecolitis-ess.html

The Crohn's and Colitis UK charity reports 25%: http://www.nacc.org.uk/downloads/factsheets/SurgeryForUC.pdf

CCFA reports 25%-30%: http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/colitis-treatment-options.html

A 2012 paper published in the World Journal of Gastroenterology says this: "Surgery is traditionally recommended as salvage therapy when medical management fails, and, despite advances in medical therapy, colectomy rates remain unchanged between 20% and 30%."

I agree with the sentiment, but "100% chance" is very odd phrasing, and "OK" is ambiguous. For the 70% (or higher) who will not eventually have surgery, they will 100% not have surgery. But that is kind of meaningless. Also not having surgery is not the same as complete remission, so "OK" is not clear in this context.

You seem to agree with and echo the point that the majority of people do not need usury. You seem to be in line with the idea that some people (perhaps those who have already had good treatment results) are even less likely to ever need surgery.

it is just that "100%" means certainty - not chance, so putting 100% and chance in the same is silly.

I agree that if you anxiety or imagination runs wild when you hear of some fraction of people with a problem or bad outcome, then the internet can be a very bad place to be. But, as I think this thread shows, it can also be a reassuring place.

I think we also differ as to what severe disease means. Southern girl, I think your attitude is great and I've done all I could to avoid meds or at least the dangerous ones but my daughter actually would have died without them. If you had severe near death UC when you were younger, was it resolved with one course of pred?

I think many people here could probably teach most GIs about IBD "outside the box" treatments. That doesn't mean they're able to put themselves in remission is all I'm saying. I'm glad the cherry juice worked for you but many (most) are not that lucky.

I know one woman, in my town, who had a bag who died in her late 80's or early 90's. She had a very happy life. I believe she was diagnosed decades ago, and had the surgery not long after.

I know some on here and in life that haven't had surgery and are happy.

But we are seeing more advanced cases. So I understand why they went to surgery when nothing else worked.


I'm on the path of surgery because of my intolerance to 5asa's, Imuran lowered my platelets and wbc and almost stunted my bone marrow. I refuse anything higher because it may cause the same reaction. If LDN doesn't work, or simply stops working, then I'll have to go to another out-of-the-box treatment before surgery.
Like KC said, we should teach our doc's about these treatments, because the other ones simply aren't working anymore. Don't know why they keep on 'improving' on old medicine that doesn't work. Doesn't mean OOTB will work though.
My doc won't scope me because I'm on LDN. He doesn't want to see me until "my mind is convinced that this medication is not the way and I should have gone on Remi to begin with."


You need to find the way that works for you. You can't compare your UC or life to another.