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How long have you been in remission with uc?

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Posted 12/12/2014 2:35 AM (GMT 0)
Hey guys,

So I'm curious how long people have been in remission and what combo of medicine/diet/exercise do you use?

I've had uc remission for about a year and a half now...I haven't had a flare since my original diagnosis. I'm on lialda (2 tablets a day) and it works well, but I'd kinda like to not be on medicine forever if I don't have to. But I do not want another flare either!


Thanks for sharing or any advice!

Anni
Posted 12/12/2014 2:54 AM (GMT 0)
I think you are in the lucky category. I would stay on the Lialda.
Posted 12/12/2014 3:03 AM (GMT 0)
hey white girl :-)

ya, just keep taking the drugs - as long as you have no side effects or intolerance, and they continue to do the job, there is no good reason to stop -

of course, i can think of all kinds of bad reasons to stop the drugs, but if i start talking about those things, the compliance Notzi's will be all over me !

welcome aboard turn
Posted 12/12/2014 3:19 AM (GMT 0)
I'm coming up on 3 years of remission in April. I never thought I would get here after my last flare. I've even had another kid and everything. I'm on 4 pills of lialda and I use Canasa about 3 times a week for good measure. I'm also grain free and low carb/sugar. Stay on your meds is all I'm gonna say. It's not worth another flare. I had to use prednisone to get out of my last one.
Posted 12/12/2014 3:40 AM (GMT 0)
Stay on Lialda forever. This is your first post. I can't tell you how many people post here who got cocky because they were in remission and quit their meds only to flare again and find out what worked before doesn't work again or work as well. I would also be very aware for the rest of your life of certain events that could trigger a flare such as stress, viruses, and antibiotic use and premptively increase your Lialda to four per day during those times. Don't wait to see symptoms. You need to be proactive instead of reactive or it could be too late to cut the flare off at the pass. UC is ALWAYS with you even while in remission. It waits in the dark behind the bushes and pounces on you the minute you let your guard down.
Posted 12/12/2014 3:43 AM (GMT 0)
Many of us would KILL to only need two lialda to be in remission. Do not ever stop it. I repeat! Do. Not. Ever. Stop. It.

As for me, id say i started feeling really good by the end of february and early march. I stopped prednisone in january and started feeling crappy again. Imuran and simponi werent cutting it so i started nicotine. Been doing well on the 21 mg patch. Im not sure if imuran and simponi are even working. I guarantee you though if my next colonoscopy is good, my gi doc will give all the credit to his drugs and none to nicotine.
Posted 12/12/2014 4:33 AM (GMT 0)
So I feel like it's wack-a-mole, controlling symptoms and doing a good job at it, actually. But don't consider myself in remission. Using mostly enemas to tamp those flares or symptoms down.
Posted 12/12/2014 4:56 AM (GMT 0)
Gary speaks the truth! Don't let your guard down.

For me, remission for 5 years with remicade. My dx is left side UC and I'm having second flare of proctitis in a year. My first doc was a fruit loop and kept telling me to stop my asacol whenever my colonscopy was normal and of course I would flare.

Don't stop your meds. Ever. In my experience, it gets harder to manage after each flare.
Posted 12/12/2014 5:10 AM (GMT 0)
The longest remission I've had is 8 years! I actually thought I was cured! But boy was i naive. As soon as I stopped the contraceptive pill to get pregnant, I had my first flare. I managed to control the flare with pred but have been flaring on/off since giving birth last year and still trying to control it.

Over the 8 year remission, I came off all meds, ate what I wanted, did what I wanted and acted like someone who didn't have uc. Unfortunately I can not say I would have stayed in remission had I continued on asacol but I may have had a better chance. I do believe you need to tap in to your flare triggers and for me it's hormonal and stress.
Posted 12/12/2014 5:14 AM (GMT 0)
My record was roughly 1 year, and it was a borderline flare, so it shouldn't actually count.

My greatest remission lasted five months, I was normal for that time, worked three jobs, went to school, and took three vacations to over 10 cities in 4 countries in total.

It was a race against the clock, only a matter of time before the beast was awakened once again. Glad I took full advantage of it, whenever your health returns, take advantage of it, it's often more temporary than we would like to believe.

As for the medication that kept things in line, it was a low dose of asacol, nothing extraordinary or unique, but it did wonders. I think it all has to do with the severity of your condition and the way the medicines interact with your system. I wish there was a formula to simplify living with this disease, but we don't live in a perfect world.
Posted 12/12/2014 5:26 AM (GMT 0)
and yet there are those who are strict adherents all the way to surgery - no guarantees, regardless of the direction -
Posted 12/12/2014 6:29 AM (GMT 0)
I don't really believe in placing too much restriction in your life when it comes to this disease. It already restricts us when we r flaring. Why should we let the b**stard win! Lol! Live, Love and be merry! And if your UC is going to flare it's just going to no matter what we do!
Posted 12/12/2014 1:01 PM (GMT 0)
I was in remission for 5 years after my first flare, until I had a very mild flare this spring. I've been back in remission for several months now. I take Apriso, and used meslamine enemas until the flare this spring, when it seems that rectal mesalamine started bothering me, so now I just take Apriso. I have also always taken a daily probiotic supplement.

I personally think it's unwise to stop taking a drug like Lialda, as it has such a good safety profile. You are more likely to flare if you stop your meds.
Posted 12/12/2014 1:54 PM (GMT 0)
Many of us would KILL to only need two lialda to be in remission.
Do not ever stop it. I repeat! Do. Not. Ever. Stop. It.


I agree, mesalamines like Lialda are probably the mildest meds around with few side effects for most people. If Lialda isn't giving you any problems then it might be a mistake to stop taking it and later find out that you need a much more potent med with more serious side effects to get back into remission.

Many people stay on a maintenance drug like Lialda and use mesalamine rectal meds like Rowasa as needed. As a bonus mesalamines like Lialda are considered anti-inflammatory and therefore help prevent bowel cancer.
Posted 12/12/2014 2:29 PM (GMT 0)
After being hospitalized and almost having surgery, I've been in remission for 3.5 years. On Remicade and Asacol.
Posted 12/12/2014 4:16 PM (GMT 0)
I had a nice stint of about 3 years or so while being on remicade and imuran. Although I was only on remi for about half of that. I have found Imuran to be the most effective for me, at the moment.
Posted 12/12/2014 7:26 PM (GMT 0)
I was in remission from 1998-2010 with Apriso, had a minor flare in 2010 and switched meds to Apriso.  Had a major flare 08/2013 - 08/2014 and am in remission now taking meds Apriso and Rowasa.
Posted 12/12/2014 7:40 PM (GMT 0)
Like yourself I went into symptomatic remission quite quickly on only 2g Pentasa after being diagnosed earlier this year..I had a wobbly moment a few weeks ago when I stopped my Meds for a week, but fortunately I managed to recover from that by quickly upping my Meds to 3g Pentasa with 1g suppository a day...I am still unsure whether to just stick with the 3g or try to reduce back down to 2g maybe in a month or so....not sure what to do really....I think I will end up sticking with the 3g and waiting to see what my colon is like after my colonoscopy in February.

My lifestyle now is very different, I don't smoke, I hardly drink, I am Gluten and diary free, I eat well and healthily, and I swim a couple of times a week, and so I think I have worked hard to get to this place.....

Sometimes though I just want a cigarette so bad!!!....its a constant temptation, both my daughter and my husband are still smoking!!! Urgh
Posted 12/12/2014 11:44 PM (GMT 0)
Bananagirl - I would like to hear more about the nicotine patch and your experience. What symptoms does it seem to help with for you? I have some stubborn bleeding and am NOT interested in another round of Pred (or worse) if I can help it. Glad it sounds like you are doing better!:)
Posted 12/12/2014 11:48 PM (GMT 0)
Couldn't agree more with Gary.

I've been in remission again for 1.5 years with Azathioprine (Imuran).
Posted 12/13/2014 12:18 AM (GMT 0)
so Andrina, how many times did you go off your drugs since 2002 ? and why did you stop ?
Posted 12/13/2014 12:35 AM (GMT 0)
I was diagnosed at 18 months, never flared again until I was 18 years, and that was just arthritis in my knee/ankle.

I did azulfadine from 18 months to about 15ish years, went off everything until I was 28, and suddenly had a flare that lasted 6 months. Got on Lialda and flared 8 months later...but I've been stable since then. I just turned 30.
Posted 12/13/2014 12:47 AM (GMT 0)
cgk, there are a bunch of threads on nicotine if you search for it. i've posted on most of them. i started with lozenges first and then landed at 21 mg patches. a few studies i looked at used 28 mg for remission so i still wanted room to increase if need be. luckily, i do fine with the 21 mg.
Posted 12/13/2014 5:49 AM (GMT 0)
I was in remission for 6 months once. Never since then! I actually was only on asacol at the time. I was nursing my baby at the time and I believe my immune system was distracted which gave me remission. Stopped nursing, uc came right back. Yes do not stop your meds no matter whAt. Uc is a monster and will always be there. But I hope you keep feeling good !
Posted 12/13/2014 8:04 PM (GMT 0)
Thanks, Bananagirl - I have been reading those posts all afternoon and am really excited. That's fantastic that your GI doc was so supportive. I started slipping out of remission around early November and have been trying to get this flare under control - I'm trying everything but nothing is really flipping the switch for me. I go back to the dr on Monday - he told me yesterday he could call in Pred for me if I wanted, but I am going to need to be a lot worse off to be open to that! I am going to go buy the lozenges today, just to see what happens - it sounds like if it's going to help, I will know pretty quickly and can start playing with dosages and patches. THANK YOU for all of those posts!
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