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What's your longest flare?

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Ulcerative Colitis
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Posted 1/20/2012 1:33 AM (GMT 0)
I have been in flare mode now since October 2010. I was diagnosed in January 2011. Is this a long flare? or typical? I don't know since it's my first flare-up.


Asacol (12 - 400 mg pills per day)
Canasa nightly
VSL 3 (two caps in morning)
Multi-vitamin
Lexapro (trying for stress management)
Claritin and allergy shots
Asthmatic
Eczema
Low platelet count
Posted 1/20/2012 1:47 AM (GMT 0)
     What are your symptoms?  Mild...severe?  When first diagnosed at age 52 in 1998, my flare lasted two months, which became the norm for the first few years I suffered with UP.  My flares were usually brought under control with prednisone, Asacol (but switched to Colazal in 2000) and rectal meds.  In 2002, my GI doctor placed me on 6MP but it didn't keep me in a long term remission.  In 2003 I started to flare yearly, then twice a year.  Remicade failed after my third infusion and three months on Humira with no change.  I became prednisone dependent and had surgery in June of 2010.
Posted 1/20/2012 2:32 AM (GMT 0)
I was in a flare for quite a while when I was diagnosed with proctitis. I used Canasa and the symptoms were very mild, not quite remission but not too bothersome. I went on like that for about a year. I moved at that point and something (maybe stress?) brought on a terrible flare up. I went from mild, some blood on the TP, to a massive flare up with no bowel control in the matter of a few weeks. I spent months like this because I didn't have insurance. I was flared up for well over a year from all of that.

It's not uncommon to have a stubborn flare that doesn't let up though many flare ups seem to respond well to the available treatments. Have you tried enemas instead of Canasa? Have you ever used Canasa AM & PM? It definitely requires some trial and error with medication to figure out what works for you.

There is no standard with a flare up, they are all unpredictable.
Posted 1/20/2012 3:56 AM (GMT 0)
Christine1946 - I have about 4-5 bm per day and it has ranged over the course of the past 15 months from severe and to moderate. There has always been blood and mucous. My last colonoscopy in August said I had dysplasia from severe inflammation.

notsosicklygirl - I have tried two enemas with allergic reactions to both - Cortenema (shortness of breath and chest tightness) and Rowasa (facial swelling and half-dollar sized hives). I have never done Canasa two times a day (only nightly), but I will ask my doctor about that on Monday. I am trying to avoid Remicade, so I would like to try some other combinations. I tried Pred without success and I am currently on 4800 mg of Asacol without success. I developed what I thought was eczema about three weeks ago on my arms and legs and I am now wondering if that is related to the Asacol....just thought of that tonight....
Posted 1/20/2012 2:14 PM (GMT 0)
Sorry to say I was in a flare for a couple years. It was my fault for lettting it go so long without enemas or prednisone. I would never do that again. As soon as I get blood or mucous I add Rowasa nightly.
Posted 1/20/2012 3:37 PM (GMT 0)
     When you say they diagnosed you with dysplasia.  It is my understanding that dysplasia can lead to cancer.  Has your GI doctor suggested surgery?
Posted 1/20/2012 3:48 PM (GMT 0)
Longest flare for me = 2.5 years.

Sue
Posted 1/20/2012 4:14 PM (GMT 0)
5 years....pretty much had it at that point!
Posted 1/20/2012 5:57 PM (GMT 0)
Thanks for the comments!

Christine1946 - Yes, dysplasia would be the beginning signs of cancer. However, from what I understand the cells can regenerate possibly. My biopsy said the dysplasia from severe inflammation or the beginning signs of cancer and another colonoscopy would be needed in six months. I think dysplasia has to be monitored. I have an appointment on Monday and that is one of my biggest concerns - how long can I go before this turns into cancer? It's been six months now since that biopsy. I am hoping it was just from severe inflammation. My most severe UC times were last spring when my Mom was dying from cancer. I would imagine that is when the damage was done.....
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