Meds & Perspective

Hi everyone,
I finally joined up! I have a two part question. First, I wondered if there are some folks who have been able to manage their disease successfully, over the long term, with minimum flare-ups? It can get pretty scary reading the threads and it's easy to focus on the worst case scenario. I could use a little encouragement! I have UC involving the rectum and sigmoid colon and take Lialda & Canasa. Which brings me to my second question...my doctor wants me to start tapering down from 4 Lialda to 2 Lialda per day. Does anyone know the difference in the effectiveness between the doses? For example, if I drop to 2 per day, will it only be half as effective at controlling my UC? Or, is the difference between the dosage more minimal...like 5% or so?

When you search the internet it is often the most extreme cases you read about. If you stop and think a moment, if UC is very easy for you then why would you bother to ask questions about it? It's kinda like those comment cards at most restaurants, those who fill them out are predominately unhappy with their meal or service. UC Pancolitis cases represent 10% of all UC cases, but we have almost a majority of pancolitis posters here. So, yes, I would bet the population is a bit biased

One of our Mods, Red_34 (Sherry), has been in a remission for 8 years without a lot of trouble. Another poster, Quincy, has been using the mildest UC medications for over a decade with minimal trouble from her UC. Some do stick around to encourage and help others here, even though they are doing very well themselves. The longer you are in a remission, the less likely to flare up according to some long term studies of UC patients. So it's key to find a good solution for you, get you in a deep remission and UC will be of the least bother over the long run.

Some of us do have easy cases of UC that have the least amount of trouble from UC. Some of us have moderately difficult cases of UC that get worse and require stronger medications over time. Some of us are unresponsive to everything and surgery quickly finds them (about 25% of cases). There's no crystal ball, or absolute way of knowing what kind of hand you've been dealt by the dealer at the start. We all hope for a perfect hand of cards, and some luck out. For some of us, UC is nothing but endless crap and bother (like getting only low numeric cards in a game where face-cards win). But the majority of us land somewhere in the middle, given an OK hand of cards and do our best with it by being smart and playing the best we can knowing there will be some challenging moments!

Hope for the best, but just realize that there is a full spectrum of UC prognoses. UC can be wildly unpredictable. I wish I could tell you it is all roses, rainbows, and puppy dog tails, but UC can be a witch with a capital "B" for some of us.

But I prefer data, so let's throw some at it:

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 (many healingwell posters fit this)
  
• 1% to 2% have severe disease (many healingwell posters fit this)

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

I think iPoop pretty much said it all. I was diagnosed in 2013 and have flared badly once since then, with minimal bumps in the road otherwise. My doctor’s rule of thumb is not to drop lialda until symptoms are basically gone for 6 months. I just dropped from 4 to 2 a day a few months ago. I had been taking 4 a day for over a year because some other health issues were aggravating my UC a bit. Had to get them out n control before the UC would fully cooperate. That being said I feel like I lead a “normal” life with the disease while using pretty mild meds. Currently I take 2 lialda a day and use rowasa every Tuesday, Thursday, and Sunday.

occasional blips in symptoms are to be expected, although not exactly welcomed - pretty sure most of us would prefer never to see them again - but it is what it is -

are you still using the canasa ? have you ever tried enemas ? they usually do a better job than the supps, and if you're gonna putt something up your butt, make it the best it can be

stay at your current dose for now - as long as you are still having some symptoms - and if you do decide to drop, go to 3 first and see how she blows -

Your doc's mistake...initially put you only on suppositories. An obvious that it wasn't enough coverage.

I realise many think that blips are normal....to me, they are a flare, albeit mild.

Your doc should have put you on retention enemas of 4g dosage and 2400mg lialda. I know many think high dosage oral initially....not an issue unless one has some side effects and may assume the med isn't working or one is intolerant. The oral can be increased in increments to optimum level, but the rectum and sigmoid should be fully covered with a higher dosage.

When I flare, I sometimes increase the oral to 3200mg, but most times I remain at 2400mg. I do, however, increase the enemas to nightly. I depend on my symptoms to know when to decrease.

If your doc wants you to decrease the Lialda, only go down to 3600mg. Add enemas for a few weeks and see how you feel.

I'm approaching my 3rd decade dealing with this and using only mesalamine oral/rectal. I do taper (process) rectal meds to maintenance over a period of time. The suppositories can come in handy, but I don't believe they are enough medication or coverage to deal with the iffy area of sigmoid close to the rectum.

welcome to the forum,
q

Mini flares are still flares.....we grow to tolerate, and it should be the other way way around.

You need to be on retention enemas.

Alternating is fine, but the bottom end is being undertreated.

Some doctors don't have high expectations of patients regarding rectal meds because compliance can be low.
You should request the enemas because you want to try them.

q