Newly diagnosed. Chance of relapse on meds?

Hello all. I’ve had some mucous off and on for years but only recently began having daily cramps with bloody loose stools and a tender abdomen. After two scopes, I was diagnosed with UC. Doc says it’s mild. He has prescribed me 12 weeks of Uceris and 3x Lialda daily. He wants me on 2xLialda indefinitely. I greatly improved after only 5-6 days on the course of meds.

That said, I forgot to ask him a question of which I’m very curious to hear the answer. Is it common for people who are diagnosed at mild stages and begin indefinite courses of anti-inflammatories to relapse? I know stopping the meds would definitely increase my relapse risk, but are my chances of staying in remission on the meds pretty high?

Thanks!

35 yo female

yes, all UC patients on medicine will eventually relapse.

Nothing really you can do, i was also on Lialda when I was first diagnosed. It lasted me 3 months before becoming ineffective. i've been fighting this 11 month flare ever since.

Best thing to do is put it out of your mind and focus on living your life. like DB said, for some it is months before a flare happens, others can go years without a single problem from UC.

Yes, staying on your meds gives you the best odds of a longer remission and more infrequent flare. Some of us can be in a remission for 2, 5, 8 or more years. Some of us flareup again in less than a year. There's no knowing for certain as an UC prognosis can be quite wildly variable and unpredictable person-to-person. Some stay on the mildest meds indefinitely with only minor and infrequent flares, making uc only an occassional and infrequent annoyance. Some of us have our UC progress in extent and severity over time, requiring stronger and stronger medications to keep pace with and we have a struggle with a difficult to manage uc. There's no knowing what cards you've been delt. Some of us get a winning hand, others get an okay hand, while some of us end up with total crap.

being careful of antibiotics, adding probiotics, taking vit-D for immune health, ... all of these can help too

What are the chances? Here's some interesting stats I put up in our resources section a while ago.

Odds of remission and varying degrees of flares

Ulcerative colitis patients in a given year:

• 48% of people with ulcerative colitis are in remission
  
• 30% have mild disease activity
  
• 20% have moderate disease activity
  
• 1% to 2% have severe disease

70 percent of patients who have active disease in a given year will have another episode of active disease in the following year.

Only 30% of those in remission in a given year will have active disease in the following year. The longer a person with ulcerative colitis remains in remission, the less likely he or she is to experience a flare-up of the disease in the following year."

Source: http://www.ccfa.org/resources/facts-about-inflammatory.html

Odds based on initial disease extent

• On average, individuals with ulcerative colitis have a 50% chance of having their next flare within 2 years (Rowe).
  
• The majority of individuals who advance to more extensive disease will do so within the first 5 years after diagnosis (Rowe).
  
• 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 (Rowe). Approximately 10% of patients presenting with proctitis will develop a pancolitis (Rowe). The disease remains confined to the rectum in approximately 25% of cases (Rowe).
  
• If ulcerative colitis involves the rectum and sigmoid colon, there is a 50% chance of more extensive disease progression over 10 years; for these individuals, the rate of complete or partial surgical removal of the colon (colectomy) is 12% over 25 years (Rowe).
  
• Pancolitis occurs in 10% of patients (Rowe).
  
• Individuals with ulcerative colitis have an increased risk of developing colorectal cancer at a rate of 0.5% to 1% per year (Le); overall, cancer occurs in 3% to 5% of individuals (Khan).
  
• Extraintestinal complications occur in approximately 20-25% of patients with IBD (Rowe).
  

Source: http://www.mdguidelines.com/ulcerative-colitis

Initial diagnosis impacts our prognosis as does our response to treatment. UC is measure by severity and by extent.Of the two, severity is the bigger and badder one. With Severity, you said it was mild (measured as mild, moderate or severe). In Extent, if you have transverse colon involvement then that's likely classify you as a pancolitis case which is the furthest extent of UC (proctitis is rectum-only, proctosigmoiditis is left-side, anything beyond is considered to be a pancolitis). You said you have responded well to your meds within a week, which is a great sign. It's possible you could have a mild case of pancolitis that responds well to your treatment and that bodes well for your prognosis. I wish I could tell you that UC is all roses and wagging puppy dog tails, but as I said, some of us have easy cases and others not so easy. I'd try to remain cautiously optimistic as things are going well for you. Just don't take UC lightly (by stopping your meds) or it can become severe, and a severe pancolitis case is a whole lot less fun.

Most of us live mostly normal lives with UC, have careers, families, pursue or dreams and have good qualities of life. Flares happen to us all eventually, we just try to make remissions as long as possible, We try to make flares as infrequent and mild as possible. That's done by having and appropriate treatment plan that manages us well and makes flares less likely.

There's a lot of uncertainty in our minds when we're newly diagnosed. We tend to fear the worstcase scenario (human nature and all). Once you've lived with UC for a while, you get to "know your UC enemy", so to speak. You know what you can expect of your UC. You know what to expect, know the warning signs of a flare and are alert to them and respond quickly and aggressively once noticed. It's like having a really annoying sibling, you know when and what he/she will act up to, you try to avoid those situations or at least make them gentler. UC can be a pain at times and not a worry in the world at times, one extreme or the other. I'd try not to panic, or be anxious about UC. Rather learn what you can, ask lots of questions and get to know your UC better.

We worry most when we're flaring and worry the least when we're in a remission. It's just the way of UC.

"I read conflicting advice"

Yup that's UC, alright. Just know that no two UC patients respond the same to pretty much anything. I can have a drink with moderation and my UC doesn't care. For others, an alcoholic drink would be like taking a colonoscopy prep and be awful. I'd wait until you heal and then try and see for yourself. As how you respond is really the most meaningful thing.

Unfortunately there is no crystal ball that will tell you everything to expect in advance, it's the million dollar question in a game show to say "how will I respond to...", it's really tough and many get it wrong. Trial-and-error and time will tell you what you have to contend with.

Sometime I do a glass or two of white wine with not symptoms next day. but sometimes I get unpleasant symptoms next day even after 1 glass. One day of drinks does not make me flare, but it does sometimes produce symptoms - but so does ice cream.

The antibiotics did a number on you gut microbes. Possibly not permanent damage, but possibly very persistent dysbiosis of microbes. Possibly probiotics can help get gut microbes back into balance.

good luck