Does UC always eventually progress?

I see so many people on here who were diagnoisd years ago and are now on biologics. I just want to be realistic about what the odds are that I will end up on something like that if I live another 20 years wih this. Is there anybody here who has had this for years and it has not progressed at all? Is anybody on the same meds they were prescribed early on?

Bess, I know uc has a tendency to spread upward. It always starts at the rectum and progresses from there up the large intestine when active disease is present. The key is to stop it in its tracks and reverse it where possible.

I've certainly had a whirlwind trip so far with uc. I am 1.5 years into this, I've always had active disease, it keeps spreading upward, and I keep going up and up the drug classes. I am getting a consultation for biologics (remicade) tomorrow. I guess finding something that works for you is the key thing, once people do they tend to stay in remission for years sometimes on the same drug.

Nothing is guaranteed. I think a lot of times people get frustrated with the disease early on wanting to be "cured" and go into treatment after treatment after treatment, each one only working a few years and then having to move on to a different treatment. Some have no choice. Fortunately I am not in bad enough shape I have to do that and just live with the disease without being obsessed with remission, not having to move from treatment to treatment to treatment.

It's been 14 years since my diagnosis and my UC has actually gotten better and I have been in remission for a long time. At my sickest, I was on prednisone and 6mp. I haven't taken either of these for many years now - probably not since the first 2-3 years. I'm only on a maintenance dose of sulfasalazine (Azulfadine), an ASA.

I'm not sure you'll get a fair sampling of responses when you pose a question like this on this forum. The folks that congregate here are mostly the ones that have ongoing struggles.

I found this 1993 study that said that 53.8% of the UC patients they followed for several years progressed to a more serious category.
link.springer.com/article/10.1007/BF01295733

I also see that Wikipedia says peak diagnosis of UC in terms of numbers of people is teen years to 25 y.o.

I've also seen the 33/33/33 statistic thrown around here: 1/3 of UC'ers will respond to Rx drugs and achieve remission, 1/3 will not and 1/3 will have surgery eventually.
I don't have a study to cite however. Does anyone have scientific study to quote?

Gary, I wasn't implying the folks on this forum were the "select unlucky." My point was most of the people who frequent a forum like this are the ones that are actively struggling and seeking answers. Those that have found ways to maintain remission tend to move on with their lives and don't frequent the forum so you are less likely to hear that positive side, no matter how small it might be. This is one of the reasons I try to come back here periodically – to share what's worked for me and to give hope that there CAN be ways to manage the condition.

The progression of this disease is VERY different in every single case....all you can expect is to NOT know what to expect! I was diagnosed in June of 2012 with very mild and limited proctitis. My GI said he would be surprised if it ever spread very far and should be easy to control with suppositories. He was right....for about 5 months or so. I then started to flare and it got VERY bad VERY fast and within 3 months I had lost 45 pounds, couldn't eat, couldn't sleep, could barely function at all. I was completely malnourished, had all sorts of vitamin/mineral and blood deficiencies and my the inflammation was SEVERE throughout my ENTIRE colon. No medications did anything to even slightly ease my symptoms or decrease the inflammation....and I didn't have time to keep trying things because basically, I was dying. My GI, the surgeon, the folks who did my Remicade infusions, interns, residents, nurses...NONE of them could believe how quickly and terribly UC progressed in me. Now I have no colon and a permanent end ileostomy. I'm not telling my story to scare you...just to prove there is no such thing as "expected" progression with this disease. It's the worst!

I have never been in remission without meds. I bet if I never took any, I would have been in a 11 year long flare.

Darn that makes me realize how aggressive my colitis is.

Mine progressed from midway through the transverse to full blown pancolitis with backwash ileitis over the course of about five months.

It seems that most people's disease does progress with time, some stay the same (especially proctitis seems to stay proctitis more often than, say, left sided stays left sided), and a very lucky few improve with age. In the Crohn's community there's some folk wisdom that Crohn's gets better after about 15 years because the immune system sort of "burns itself out" -- dunno if anyone has seen that in UC though.

I was litterally fine one moment and the next I was being told I have severe pancolitis. It hit me like a freight train and reeked havoc on me for 6 straight years. So I suppose I never progressed into anything. I was one of the unlucky ones to get hammered from the get go and ultimately had to have surgery. I have a friend with mild/moderate UC and he's been in the same holding pattern for about 15 years and luckily not progressing any further. We are all so different with this stupid disease.

In the Crohn's community there's some folk wisdom that Crohn's gets better after about 15 years because the immune system sort of "burns itself out"

I have never read anywhere that Crohn's "burns itself out" after 15 years. The latest thinking about Crohn's is that it is an innate immune deficiency (see Wikipedia), meaning that the immune system is actually underactive if anything.

Anyway, all the stats I've read indicate that about a third of people with UC eventually have surgery. But some of those will have had severe disease at diagnosis. I suspect if you measured exclusively mild to moderate cases, the surgery rate would be lower.

My brother is an example of someone whose disease does not seem to have changed very much in 15 years. Bit of a moot point whether he has UC or Crohn's tbh: he calls it Crohn's, but there has been doubt cast on this diagnosis. Whatever it is, it's colitis and not small bowel disease. He has taken the occasional course of steroids for flare-ups, but otherwise hasn't gone beyond Asacol and azathioprine.

Me, though, I'm a trainwreck. My disease really did go from very mild to very severe.

The one thing I will add is, be careful coming to forums, they are a great place to get advice, I know I ask a lot of questions, but usually those who are most active are those that are currently dealing with bad flares, and are in the minority. Not everyone here falls in that category, but those that achieve remission tend to disappear from the site, and then reappear when the flare returns. I know I got away from here during a four month remission, but came right back when the issues started.

This disease is so weird. I myself started out with a relatively little amount of inflammation (6 cm?), but it was pretty severe. Then it spread and drugs didn't help. Surgery at 1.5 years after dx. I probably could have kept fighting, but I didn't think the strong remission prospects were good and I didn't want to live the way I was living.

I know someone else who was completely fine for five+ years (very mild symptoms, maybe only mesalmines or something similar) and then it hit her like a freight train. I think within a six month period she went from fine to almost emergency colectomy. Now she has a jpouch and is doing great.

I've seen people on boards come on and say "I've had this for 20 years and it just got bad".

Other people get it when they are 50.

Some people have one flare and end up with an emergency colectomy two weeks out from diagnosis.

I see other people going strong after 20+ years. It's just hard to predict.