Welcome to the forum, but sorry your bum is broken like ours is! Getting diagnosed is one heck of a head-trip. Most of us were young and healthy with no prior medical issues, then bam chronic health condition for life, and doctors and daily meds are a tough pill to swallow. For the majority of us, UC is mild and an infrequent interruption within our lives. As the treatment goal is to get us into what's known as a remission where we are absent inflammation, and inflammation causes most of our bowel issues. In a remission I have 1-bm a day that's non-urgent, formed, free of blood, and absent all other UC symptoms. I was also the first in my family to get an UC diagnosis. My mom has IBS, and an aunt has IBS, but nothing at all like this!
As far is "what is a flare and how do I know I have one?" goes, well you were experiencing your very 1st flare when you got diagnosed. The same sort of things you experienced leading to getting the tests for your diagnosis is typical of your flares. A flare is a consistent and persistent worsening of your bowel symptoms. Flares vary in which symptoms and how many symptoms you ultimately get. When flaring you might have one, multiple or all of the following: blood in stool, loose stool/diarrhea, urgency, 3 or more bms a day, various abdominal pains, and etc.
Lialda typically takes 2-4 weeks to begin showing improvements, and a remission might take a series of weeks or another month longer. There is no instant-gratification to this illness, and internal healing. It's going to take a while. You'll know Lialda is working when your bowel symptoms improve. If your inflammation is so slight as you only poop once a day, then your doctor can run some labwork to see if you still have any inflammation left. A Calprotectin stool test, or C-Reactive Protein blood test are commonly used to check how we're doing.
I'd say your doctor's statement is accurate.
>>What should I expect?
- Expect the unexpected, UC is a strange illness.
- Know that healing is not a linear progression from flare to remission, with daily improvements. Rather it is more like a rollercoaster ride full of wild and surprise ups and downs. Common to have a really good day immediately followed by a really bad day (although it is totally frustrating).
- Know that healing takes a month or multiple months.
- Know that our doctors do not always get it right the first time, second time, and sometimes even the third time. There's just a lot of trial-and-error in treating this illness. Your doc will say try this and lets talk in 6-8 weeks and see where you are at. Keep in touch with your gastero doc and let him/her know about your progress, lack of progress, or regression.
- Know UC is for life, and so is our treatment. Expect pills for life, when you feel good and when you feel bad. Often during flares we take 4,800 mgs of lialda, and in remission we take 2,400 mgs of lialda.
- Know everyone flares eventually, and contact your gastero doc asap at the very first signs of it. Flares tend to get exponentially worse the longer we ignore them.