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What is your longest remission?

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Ulcerative Colitis
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Posted 8/15/2015 5:06 AM (GMT 0)
Just interested in how long you guys have managed to stay in remission and what medication you used to reach it. The longest I have stayed in remission was of course on prednisone and was for a month and a half. Although I know it's not considered remission I consider only going to the bathroom 4-6 times a day a win but recently I've managed to cut down from 10 bathroom visits to an average of 5 using salofalk enemas and mezavant. Much less inflammation using the enemas as well, hopefully I will get into this 'remission' thing I hear so much about
Posted 8/15/2015 9:57 AM (GMT 0)
I once had a two year remission from UC symptoms but still had fatigue issues so I wasn't in full health. This was in the earlier days of my UC, and I was just on mesalazine medication back then (asacol / mezavant / pentasa). Either I went into remission that time by changing my diet, and adding in supplements, or the flare up just burnt out of its own accord. I suggest that the flare up may have burnt out of its own accord because my flare ups in the past have all lasted 5 to 6 months regardless of what medication I do or don't take.

Over the 11 years I've had UC, medication doesn't seem to get me into remission, although it does help prevent the UC getting any worse.
Posted 8/15/2015 12:44 PM (GMT 0)
I'm at 2 years due to Remicade. I've had UC for a long time and have never really hit a true clinical remission like what I have now. Things aren't all peaches and cream tho. I still deal with IBS and Diverticular disease along with a wide array of extra-intestinal manifestations. But I am at a better point in life then before Remicade.
Posted 8/15/2015 12:56 PM (GMT 0)
My longest was 7 years with Remicade. It was awesome, pooped once a day, traveled a ton!!! Only thing that reminded me I was still sick was going for The infusions!
Posted 8/15/2015 4:56 PM (GMT 0)

cupcakespinkgal said...
My longest was 7 years with Remicade. It was awesome, pooped once a day, traveled a ton!!! Only thing that reminded me I was still sick was going for The infusions!


God darn, 7 whole years. That's great to hear. How often did you get remicade infusions?
Posted 8/15/2015 5:30 PM (GMT 0)
I started at every 8 but did so well went every 10 weeks the last 3 years so that was one less infusion a year. Remicade is the only thing that ever totally healed my colon and made life completely normal!!! I miss it!
Posted 8/15/2015 7:54 PM (GMT 0)
May I ask why you stopped remicade?
Posted 8/15/2015 9:10 PM (GMT 0)
It was a combination of 2 factors, debilitating headaches that developed and bad advice from a bad GI Dr. Looking back I shouldn't have listened to the Dr or gotten a second opinion before stopping. Long story short he didn't tell me with my history of being on it twice already (once for 2 yrs, the 2nd time for 6 yrs) I would most likely not be eligible to ever take Remicade again.

My Dr now doesn't think it should have been stopped at that time and if I had my current GI then I wouldn't have stopped.

The headaches were way better than the 4 year flare that Simponi just got me out of!!!
Posted 8/15/2015 9:35 PM (GMT 0)
That's exactly why I'm going to cleveland clinic for 2nd opinion. I figure if I'm within 2 hours of the 2nd best gi hospital in the us, I'd better take advantage. Glad you are having success. You must be one of the first for simponi. Best of luck!
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