See my in-line answers in green, below:
KC5242014 said...
So many questions that plague my brain each day...
1. My GI doctor tells me I have moderate proctitis and diverticulitis that it could eventually travel further into the intestines if we don't "get it into remission" - does this mean it would be full-blown UC? Which one is worse (proctitis or colitis)? Does this mean I would be at risk for colon cancer? At what point do people consider surgery? After years of no remission?UC is UC, and proctitis is an UC already.
Generally, UC proctitis patients have the least odds of it spreading to a greater extent. There are always outliers where it happens. "If ulcerative colitis is initially limited to the rectum at the time of diagnosis, fewer than 30% of individuals will go on to develop more extensive disease. Approximately 10% of patients presenting with proctitis will develop a pancolitis. "
Extent matters less than Severity of inflammation does. Severity of inflammation is what makes our lives pure miserable. Having very limited extent of severe inflammation is much, much worse then having a maximum extent of inflammation at a minor severity.
Colorectal Cancer (CRC) is not a factor until you've had UC for at least a decade, as risk increases as does colonoscopy screening. Less than 5% of UC patients ultimately get a CRC within their lifetimes, while 95% do NOT get it (low odds overall). Factors increasing our CRC odds are length of time since initial UC diagnosis, extent and severity. Those who've had UC for 30 years are more likely to get a CRC then new diagnoses. Those who have an UC pancolitis (that is whole large intestine involvement) are more likely to get a CRC then those with an UC proctitis (just rectum involvement). Those with Severe inflammation that's been poorly controlled are much, much more likely to get a CRC then those who have had only mild, well-mannered UC.
When do people consider surgery? When nothing works, and they've tried nearly all of the UC treatments available and are miserable: mesalamines (asacol, lailda), immunomodulators (imuran/azathioprine/6mp), and multiple biologics (humira/remicade/entyvio). Often it takes years to go through all of those medications. In the minority are emergency surgeries that happen to some, who flare badly, are hospitalized, and nothing but surgery can control their UC.
2. Also, he is encouraging me to switch from the current meds to Entyvio OR Humira. I checked, my insurance covers either. Has anyone on this forum had good luck with either of these after failed meds? Which works better? I'm going to the bathroom far too many times each day; I am ready for relief. I just don't know which one to go with?UP cases do sometimes require stronger medications. Having UP doesn't give you an "easy pass" to the whole UC thing, as the rectum is always where UC is the most severe, stubborn, and hard to beat.
Are you on rectal steroids (foams, enemas, or suppositories)? Have you tried prednisone? Those will give you the quickest relief to frequent bathroom trips (works in days to a week).
Humira works in 6 weeks or less. Entyvio takes 10-12 weeks. If you're suffering now, then Humira makes more sense. We've had posters have luck with both medications here.