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Ulcerative Colitis
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Posted 6/21/2011 3:25 PM (GMT 0)
Hi everybody. I was diagnosed in January, colitis of rectum and sigmoid. Asacol (9 a day) and Canasa (1 a day) put me into immediate, complete remission. A couple months later the doctor had me go to Canasa every other day, and continue the Asacol as-is. Still did fine. I was doing so well, I tapered myself down to Asacol about six pills a day on average, and started "forgetting" Canasa most days, taking it about once a week. In my mind, I was thinking maybe this colitis thing wasn't such a big deal after all, and maybe I could stay in remission with no meds.

Then, earlier this month, started getting a bit of blood. (But no urgency or frequency or other symptoms.) That was a big reality check.

I kicked it back into high gear on the meds, back to 9 Asacol a day and Canasa at least once a day (and sometimes twice). I think the blood is now going away, but still verifying.

Moral of the story: Don't get overconfident. Take your medications! I am not sure which one is more important for me, the Asacol or the Canasa, but I suspect the Canasa. I think it controls the very low inflammation. Maybe the Asacol protects the rest of the colon, decreases the chance of it moving on up and around the bend.

Canasa: the underrated workhorse in the war on ulcerative colitis.

Post Edited (DavisD) : 6/21/2011 11:25:32 AM (GMT-6)

Posted 6/21/2011 4:24 PM (GMT 0)
Very true, sometimes even a reduced dosage may re-iignite things
Posted 6/22/2011 12:14 AM (GMT 0)
Very wise words :)
Posted 6/22/2011 12:16 AM (GMT 0)
DavisD, I think this is a good reminder for us all. When I was diagnosed, it was mild and limited to the sigmoid colon. I took my meds (only Colazal at that point) and went into remission almost immediately. But my GI at the time had explained nothing to me about the disease. I had no idea that I needed to remain on the meds or why-she had expected that I had done my homework about it, and she didn't know a lot about the condition itself. (that practice was such that once you saw one of their docs, you had to always see that doc-they did not allow people to see anyone else in the practice-weird) At that point in my life, I had had no health problems, and I was not really aware of how important it was to self educate as well as ask questions.

By the time I started having problems again later that year, the Colazal was no longer enough. So I tried a steroid rectal at her urging, and that made matters worse. Anyway, long story short, I couldnt get things back under control, and wound up switching practices right before I was first hospitalized in 2008. My new doc has been awesome and they do their best to keep me in remission. But now I have a moderately severe case of left sided UC, and I can't help but wonder what my condition would be like had I known enough to stay on the maintenance meds from the start. Who knows, but my life might look very different than it does now.

So yes-a good reminder for everyone not to get complacent. Keep up with those meds!!!!
Posted 6/22/2011 12:32 AM (GMT 0)
So can someone explain to me why, after only using 20 days of Canasa, my Dr. would tell me not to use them anymore.  I even asked about tapering it and was told to just stop.  I was concerned about what might happen, and within 3 days, I was having rectal issues.
Posted 6/22/2011 12:47 AM (GMT 0)
Why did he ask you to stop? Were your symptoms gone? Or was there something else going on that caused him to think it wasn't effective? Was he suggested an alternate treatment? Strange to tell you to quit using something that is working for you!

If you are having issues, I would immediately go back on the Canasa!!! Forget the doc-if you know it works for you, listen to your own body on that one. I have become the queen of telling my GI what works for me and what doesn't, and he doesn't always like it, but I know my body best. (I do listen to him though-don't get me wrong. There are just some areas in which I know best)
Posted 6/22/2011 1:00 AM (GMT 0)
Absolutely right-- stay on the meds that get you to remission! (Unless you have to taper off steroids & onto some other type of UC med.) My 1st doctor did not realize that was necessary & had me quit after 3 months of successfully medicating proctosigmoid UC. Within a few weeks of quitting the med, my UC flared again and involved the descending colon as well. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

Post Edited (Old Hat) : 6/21/2011 7:03:16 PM (GMT-6)

Posted 6/22/2011 3:15 AM (GMT 0)
Yes, I agree. I've learned my valuable lessons from the past lol.

Can we stay on Canasa as long as we want? My GI didn't give me refills for it when he gave me refills for pentasa.
Posted 6/22/2011 3:19 AM (GMT 0)
I have pretty much an open script for rectal meds - in my case it is steroid enemas. But Canasa and Rowasa can be used long term and as maintenance. Some docs like to reserve the rectal meds for when you flare and not for maintenance for some reason - perhaps so it doesn't lose effectiveness? Lack of compliance?

Even when I could take Rowasa or Canasa, my doc let me use them whenever I needed to.
Posted 6/22/2011 4:05 AM (GMT 0)
Wow, some of these stories of proctosigmoiditis turning into something more involved have got me scared! I was playing with fire and now I realize how dumb that was. Well, I wasn't off meds completely, but had tapered down too much. Here's to hoping I'm on the way back into full-fledged remission.

about rectal meds. I think doctors perceive that patients hate them, so they think they're doing you a favor by getting you off of them when possible. Also, Canasa is expensive, so they might want to be conservative with them from a cost perspective. I doubt that overuse makes them lose their effectiveness the way antibiotics stop working against certain germ populations that have developed resistance. Rather, I think the underlying disease progresses, on its own, and becomes too much for the meds to handle.

I am a little torn right now between using one Canasa per day versus two. I am on 9 Asacol per day, 400 mg each. Would you worry about mesalamine overload? That's one reason I had slacked off the meds -- concern about organs.
Posted 6/22/2011 7:52 AM (GMT 0)
BeachGirl...Why would your doc say that?.....why would a doctor even refuse rectal meds to a patient?
Who knows...I assume they're misinformed or just stupid. Not ignorant because it's information that's been "out there" for at least a quarter of a century (sounds better than 25 years..lol)

Call the doctor, actually, and request refills and say it was premature to stop them and you're flaring again. OR...better yet, ask for retention enemas..Rowasa.

Live and learn...maybe your doctor will learn from YOU.

Davis...it's a learning process and we've all been there.

Actually, the retention enemas are a better bet, better treatment options, but the Canasa is good for maintenance if you prefer to use them.

Thanks for sharing your experience.  It speaks volumes.

 Maybe others will listen who don't already know the value of them.

.

Stay well..

q

Posted 6/22/2011 3:39 PM (GMT 0)
Thanks for everyones comments, I made it aware to my GI that the canasa was the most amazing drug I was given. I really have no idea why they would ask me to stop, as I am still flaring. Makes me want to switch DRs again......
Posted 6/22/2011 6:33 PM (GMT 0)
Yes, I keep learning this lesson over and over again. I never stop taking my meds alltogether but I get cocky/lazy and start missing a few doses of Asacol here and there and don't keep up with taking my Rowasa as often as I should for maintenance, and then I start flaring again...like right now. I should have learned my lesson by now to keep up with the Rowasa! it's a difficult thing to stay diligent with medications (especially rectal meds) when you're feeling fit as a fiddle. I also need to be more diligent about getting enough sleep and cutting down on sugary snacks and drinks. These both really mess with my system.
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