Is the initial diagnosis always the diagnosis?

I wonder if the original diagnosis was incorrect. I am not sure, but look forward to hearing the answer. Well it is good news that the flex sig showed a good looking colon. Isn't that a great feeling. Good luck to you!

kazygirl, I am surprised they told you it doesn't spread. I am under the impression that it usually progresses. It start with Ulcerative proctitis (rectum area) and moves on unless you are real lucky. I think my doctor says 30% of UP might not progress. It sounds like Alabama had a worse diagnosis the first time and a lesser one the second. My guess is maybe she is in some type of remission. I have no idea, I wish no one had to deal with this frustrating disease.

Ditto Red....
As well, rememeber that UC starts at the rectum upward...heals downward to the rectum.

AB....You're in an early flare.....make sure you're on the rectal meds.

I'm sure that if your whole colon was involved, it would have been obvious.

A flex sig cannot allow the doc to see what's above its limitations, but based on the fact that you have been properly diagnosed with Ulcerative pancolitis, it's assumed that above the flex sig will be clear.
You'll have the potential to have it all flare again...let's say if you stopped the Lialda.

quincy

Yes! You are all making sense.
I did call the GI nurse today and she confirmed what you all are saying, too. She said, " you were diagnosed with pancolitis and that remains, but you are better and don't have the inflammation all over the colon, it is much better." She said I will always be pancolitis, like Sherry mentioned--the potential to have inflammation in the entire colon. Bellski, you are correct and Sherry hit the nail on the head, too. That explains why my recent flares are in the lower areas/rectum and if not tackled, will go back to the entire area. I am so very thankful that the colon has healed so well and quickly. I can only hope the same for many that are on the board.

Quincy, I remember you responding to a post awhile back and learning from that that the flare starts in the rectum. That makes a lot of sense and I am well stocked with cortenemas and canasa, now! I'd like to add the cortiform to the arsenol, one of these days. I am staying on Lialda. GI said I could go down to 3 vs. 4/day, so I have started trying that, although psychologically, my mind thinks the more meds, the less flares. And, I 'm still 'tinkering' with the idea of changing meds (only with GI doctor blessing) to get a smaller pill, but the area that it dissolves in is the kicker, as you and others on another post recommended me looking into. The GI doc says Lialda is the medicene for me. That speaks volumes to me, believe me!

So is it the case that early intervention (like with a steroid enema) while a flare is still based in the rectum area can prevent the flare from progressing up the colon?

Hans, not necessarily. Med compliance is usually vital in order to maintain an equal balance in the colon and prevent inflammation. But advancement can also be genetic. Some people who are not med compliant and are diagnosed with proctitis may never have more then that while others can be strict about their med regimine but end up having it spread thru out their colon. There is no guarantee that your disease position is going to stay that way or not.

Just got back from consultant where he told me that my colon was effected 70% instead of the 50% he first thought it was a bit of a shock so i would say first dx is not always the right one

I think the question focus is if one is originally diagnosed with ulcerative pancolitis (complete colon involvement)...is that always the "diagnosis"?

In one word ... yes...healing doesn't make the disease cured from the original site. It can be controlled, however having flares limited to the lower part of the rectum....being a current status rather than a new diagnosis.

UC can spread from an original diagnosis site if it's limited....not for all, but for many.

There are many with an original UC diagnosis where it's eventually changed to CD. That's because of a misdiagnosis where the CD mimics the pattern of UC...especially in the early stages....until it becomes more advanced it seems to be more obvious.
I must also point out that some doctors aren't good doctors.
Some patients misunderstand the diagnositc term "colitis"...assuming it's UC.

There are also other bowel infections and diseases that mimic UC...one can have UC with other infection or disease..so, for some, diagnosis can definitely change..

q