Is pancolitis really the worst form?

Malaika, welcome to the forum. I'm sorry you have developed UC. I am glad you feel like you're coping alright. Everyone's different so I don't think it's useful to compare your coping ability with your friend's. When literature says one thing is worse than another they are usually talking about medical outcomes. So pancolitis might be linked to more colectomies than inflammation limited to the rectum, and that might be a more severe medical outcome.

I'm sorry you are having trouble achieving remission. There's a lot of really good experience on this forum and I hope you will take advantage of that to get advice on treatment strategies that might help you. Even if you are hanging on at this point and functioning despite your horrible pain and fatigue, there may come a point where you will need a colectomy because of infection or other progression of your disease if you are not able to treat your pancolitis effectively.

pancolitis mean it is all across your colon, and that has treatment implications in choice of drugs and evaluation of symptoms. Since UC does tend to start at the far end and work its way up, this is some indication that your case is more serious, and may have less chance of remission.

However the terms "mild", "moderate", or "severe" before pancolitis, left-sided colitis, or proctitis have MUCH MORE to do with how bad a case you have.

You can have mild or moderate pancolitis and be totally fine getting into a good treatment plan. I had severe pancolitis which is about the worst you can have. Treatment is usually really tricky. I had my colon removed because of it. I was a really severe case though.

Pancolitis has the worst prognosis, like kazbern said. However, that just means that people with pancolitis are more likely to end up having surgery - but not that they inevitably will. I've heard of people with limited disease confined to the rectum having surgery, so there are no certainties for anyone.

Also don't worry about dying. Virtually nobody dies from IBD nowadays. The high death rates in the past pre-dated steroids and vastly safer surgeries: colectomy used to be a dangerous operation, now it's considered to be a safe surgery with a mortality rate of less than 1%.

Symptoms are rather tricky. They do not always correlate to disease activity. So yes, it is possible to feel okay while your disease is getting worse: that happened to me. That said, beyond a certain point I think it is impossible to have severe disease and not feel it. I'm not just talking about more diarrhoea, blood etc., although you'll probably see that as well; I'm talking about feeling systemically ill, eg fevers, anaemia, malabsorption, etc.

Take systemic signs of illness seriously, because they usually mean your disease is highly active.

And, finally, it's important to monitor your disease. Always ask for test results, don't just assume that everything is okay unless a doctor tells you otherwise (that was my mistake). Your best chances of staying on top of things is to keep track and to ask for stronger medication if your current meds aren't cutting it. It's untreated inflammation which does the damage in the long-term. I'll be honest: most people do find a combination of meds and diet which works for them, but a minority don't. Doesn't matter what they do, nothing works. If you end up in that boat (I obviously hope you don't), then don't kick yourself for it. There was probably nothing you could have done.

UC can be measured by both extent and severity of inflammation -

i believe you can have mild pancolitis or severe proctitis - but don't quote me -

for the most part, my pancolitis was not severe - my colon responded fairly well to lower level drugs -

I had my first UC related colonoscopy about 4 years ago. My GI doc at the time said I had severe pancolitis and sent me home with a low dose of meds. Two days later I was in the hospital. Every doc that looked at my charts said the next step would be to remove my colon.

I changed my GI doc after being released from the hospital. I've been taking Lialda 3.6 - 4.8 (along with enemas during flares) since. My last colonoscopy was about 6 months ago. My new GI doc confirmed pancolitis although my colon was looking much better. My doc would've bet it was just left sided UC until he received the tissue results back confirming pancolitis.

I can't speak for anyone else, but even coming off of a flare, I think my UC symptoms really aren't that bad compared to most. Any time I see blood my GI wants me to call and get on enemas. He doesn't want to go up the meds ladder until it's needed.

In my humble opinion regardless of the amount of colon that UC is involved with, the severity of the symptoms is what dictates quality of life.

what is wrong with the time stamps on this thread??

Bingo. The site owner knows about said bug and hasn't committed the time to fix said bug. Threw me for a loop as in frequently as that occurs...