does your experience support this Mayo Clinic statement?

hey all. 4:30am and am wide awake for some reason. Thought I'd do some UC research since my GI recently told me he thinks I may have left-sided UC, not pancolitis. I was looking at the difference between the two, and stumbled upon thie statement from the Mayo Clinic.

"The course of ulcerative colitis varies, with periods of acute illness often alternating with periods of remission. But over time, the severity of the disease usually remains the same."

Do you agree that the course of the disease usually remains the same over time? I heard the head of the GI clinic at UNC-Chapel Hill say the same thing last year. specifically, he said that the first year after diagnosis can be tricky, getting the meds sorted out, but that, after that, whatever course the disease takes for the next 3 years is usually representative of the experience with the disease that you are likely to have forever. In other words, if, during those first 3 years, your disease is stable and you're in remission, you can likely expect long periods of remission and not too much UC activity. But, if you're often flaring during those first few years, you probably will continue to flare frequently, forever. does your experience with UC support these claims?

Since it took more than four years to achieve remission, and I've now been in remission for two, no. But they're speaking of statistics for thousands of patients, and my body never does the typical thing. I'm hoping this applies to the first three years after you get into the first remission, though.

I was extremely ill for the first couple of years - weight loss, constant pain, constant D and bleeding. Now that I've learned how to manage my condition, I only experience very mild flare ups of symptoms. I haven't had any bleeding in years.

I feel like sharing this info was kind-of a bummer, so I apologize if it bothered anyone. as Judilyn said, it's statistics, which is way different than real life. anyway, thanks for sharing your experiences.

There are so many variables regarding type of meds, patient recognition of symptoms, tolerance of symptoms, consistency of med usage, misdiagnosis...etc, that the statistics could mean very little in the real scheme of things.

I think the best defense is to keep inflammation as low as possible no matter where it's extended to...and to protect all the areas above.

From what I've seen on here...there are many who have had original diagnosis with UP and it's spread to pancolitis in a fairly short period of time. Could it be because of initial meds or lack of meds initially? who knows.

UCinNC...it would be obvious if your whole colon were affected through a c-scope and biopsies. Were you diagnosed originally through a c-scope?
If yes, your original diagnosis would stand, and that now you're at left-sided probably now that you're healing...it goes in a bottom-up spread pattern, top-bottom healing pattern.

I've never been as bad as my original diagnosis....my doctor did say that statistics state that I might never have it extend past that point...but I'm on Asacol to help keep everything above that clear just incase...as well, because it can help prevent cancer..that's an added plus to keep on the meds.

I do treat any flare symptoms early...my flares are very minimal, but still obvious.

quincy