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Is it true that the longer the remission, the less chance of relapse?

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Ulcerative Colitis
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Posted 6/17/2012 4:31 PM (GMT 0)
Hello people.

I have been told by my doctor that as I have been in remission for the last 4 or so months without meds and have mild proctosig. that this is a very good
sign and the longer I stay in remission the less likely it is that I will relapse.

I just wanted to know if any of you have noticed that this is the case over the years or not?

Is it true that colitis can follow a trend and spring up every 5 years or so in some people?

I guess I'm just getting the hang of my diagnosis still and never EVER want to flare again!!

Look forward to your responses.

Cheers.
Posted 6/17/2012 6:44 PM (GMT 0)
meh, sounds as though it's summed up in a conflicting hopeful way for you.

You're on no meds, with proctosigmoitis...
Unless you had something else cause the inflammation other than UC, you will probably flare again.

If you do flare again, you will have symptoms you probably will not recognise until they become more obvious.

I wished often in the first year that I'd never flare again.

Be realistic. Hoping won't change it.

q
Posted 6/17/2012 6:45 PM (GMT 0)
i honestly don't think colitis has a pattern with remission and flares- at least not for me.

i had a 4 year remission after i was diagnosed at 17 and i was taking no medications at all. at 21, i started to see some bleeding and it's been downhill from there.
Posted 6/17/2012 7:46 PM (GMT 0)
I once asked my GI what would happen if I went off the (Colazal generic) basalazide I've been taking since 2003. His response was that the condition of my colon would gradually worsen.
I've stayed on the med even tho I haven't seen blood from colitis for at least a year or 2. ( Not sure because I had problems with hemmies and did not know where blood was coming from.)

I have days when I have food issues but usually it's when I eat out and don't know what they're using in/on the food. Life is not perfect but a he-- of a lot better than when I could feel pain through the whole length of my colon.

My guess is that if I went off the med, stopped the probiotics and was careless about my diet, I would most likely have problems again.
Posted 6/17/2012 10:30 PM (GMT 0)
Since researchers have found a cluster of genes that predict the severity and behaviour of the disease, it's likely something that time will tell, if you're new to the disease, it would be too hard to predict the future of how your disease will be affecting you (with or without meds, genes play the biggest role in the behaviour and severity), which is why some patients that take their meds faithfully can still have huge issues compared to others. Not saying meds won't help, just saying genes will likely trump everything.

With that said, that doesn't mean that each flare won't vary from another (more likely on the slight side), this disease still has a lot of unpredictablility to it.

Posted 6/17/2012 11:59 PM (GMT 0)
When I'm feeling cocky, I think that I'll never flare again, but mostly I believe it can happen at any time.
Posted 6/18/2012 12:44 AM (GMT 0)
I think its something that is variable and depends on each person. I have been lucky enough to be in a steady remission for 6.5 years. What's even more amazing is that I stayed in remission even after my dad died (very suddenly) and all the stress I have with finishing school.
Like q said, be realistic and hope for the best. You have to get over the fact that you might flare again. Why worry away a blissful remission ya know?
Posted 6/18/2012 2:55 AM (GMT 0)
My doctor told me remission and its length, varies from person to person. He told me some can be in remission for a few months, and some many years - it's all very individualistic.

IMO, if you address the underlying inflammation - which is the cause of many diseases including UC - by reducing it (via diet, supplements, probiotics, and LDN which fine tunes the immune system) as much as possible as to eradicate it, then you stand a much better chance of staying in remission.

 

Posted 6/18/2012 8:38 AM (GMT 0)
Thanks for the reply everyone. I know I have to be realistic about the possibility of things changing in the future.. I just wanted to know if any of you had noticed a particular pattern to your flares.

The one thing I have hated most in life is uncertainty and with this disease as you all know to well, that's the one thing that sticks in your mind day to day.." when will I flare again".

Thanks :)
Posted 6/18/2012 11:30 AM (GMT 0)
I was diagnosed with UC 11 years ago and have been in remission for about 5 years now. I still take Imuran daily to stay this way, but I have been lucky to not have any major flares that required hospitalization for the past 5 years!! I hope the 5 year mark is not true! I have had "mini-flares" that will last anywhere from a few days to a few weeks, but nothing major stands out.

I think that your lifestyle has a lot to do with staying in remission, along with genetics, and taking your medication as your are suppose to, and probably many other things. I still watch what I eat and stay away from particular foods that used to cause me trouble. I also think that as the years pass and you learn more about how your UC is you become more aware of what to look out for so you don't get into a full blown, crazy flare.

But in the end---UC is very unpredictable and I know that it could all change from yesterday to today.
Posted 6/18/2012 12:09 PM (GMT 0)
Personally, I used to go into remission with prednisone a couple of times.  The first time the remission lasted probably more than a year.  I was on 6mp and Asacol during the resission.  The next round of prednisone was at a higher dose and I had a remission for maybe 6 months.  So, for me, as time went on UC became more "chronic" and remission was harder to get to.  Prednisone became pretty much ineffective and my doctor would not let me take it anymore.

So, I have to say that I think it's possible to have extended periods of remmision after first diagnosis.  Mary

 

Posted 6/18/2012 4:26 PM (GMT 0)
I had a 10 year remission, taking sulfasalzine, followed by a 2.5 year flare. In those 10 years I took my meds and took good care of myself; no idea why I flared so severely but I do believe it goes to the unpredictability. I have another UC friend who had a flare after a 25 year remission. Go figure.

Sue
Posted 6/18/2012 4:53 PM (GMT 0)

there is no rhyme or reason to this disease.

Dx'd with UC in 1991, then i had a 15 year remission, no meds, ate terrrible, never worried about uc, had a stressful life, drank, etc.

I did flare again in 2006, got it under control in a few months and then on to my third and current flare, starting  in 2008 and still with me in 2012!

My  most recent flare is lasting 4 years, I take my medication like clockwork, eat beyond healthy, strict diet mod, tried supplements, alternative meds, been on tons of diff meds, was in different clinical trials, research stuff like crazy and Im still flaring.

yeah, makes no sense.

Posted 6/18/2012 7:52 PM (GMT 0)
IBD is unpredictable. All we can do is take reasonably good care of our health over time & hope for the best possible outcome. I know someone who went into spontaneous remission from fistulizing Crohn's in her late 40s & stayed healthy w/o meds for over 25 yrs, then suddenly got a neck tumor which was actually Type B lymphoma, eeeek! She made it thru several rounds of grueling chemo that cured it. A gritty survivor! / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/19/2012 2:50 PM (GMT 0)
Its like alcoholism...you can go 20 years without a flare up and then for some reason it hits and your back where you started.
Posted 6/19/2012 2:51 PM (GMT 0)
Its like alcoholism...you can go 20 years without a flare up and then for some reason it hits and your back where you started.
Posted 6/19/2012 4:12 PM (GMT 0)
Yup you can take your meds and live a healthy lifestyle but if UC is going to rear its ugly head and get ya, it's gonna get ya. It's the nature of the disease.
Posted 6/19/2012 4:32 PM (GMT 0)
I would say that for myself, I have lived with a very very mild discomfort off and on with my proctosigmoiditis over the last 5 - 6 years.

Now that I have adjusted my diet and stopped working so hard I feel better than I did before.

Hopefully this will keep me in remmission for a long time! Fingers crossed anyway.

For you ByeByeUc : Would you say that your energy levels are almost back to how they were BEFORE you got diagnosed with UC? I know you have had
surgery....

Seems strange but sometimes when I get down I think " oh well, at least I can take my colon out if it gets that bad" and it lifts my spirits!
Posted 6/19/2012 5:54 PM (GMT 0)
Pretty sure if I hadn't stopped taking my mesalamine enemas and lowered my colazal (at the instruction of a VERY bad GI doc) that I'd still be continuing my 10+ year remission.  I had my colon looking 'normal' to the point of making it look like I didn't even have UC. That was with taking my Colazal for 8 or so years (or whenever it came out - I took Asacol before that) and taking the enemas nightly.  I never followed any particular diet other than foods I knew I could eat without causing gas or IBS-like symptoms.  It did seem the longer I was in remission, the better my colon started looking. I had at least 6+ years where it looked completely normal, and before that only slight inflamation.  My last flare-up with bleeding was 10 years ago - I haven't seen any blood since then either (until this past January).

I also feel the longer you are in remission, the less chance your disease spreads up the colon.  I started with proctitis 18 years ago, then had a flare a few years late and it turned into left-sided colitis.  Haven't had a colonoscopy since this recent flare, but from the pains I had in my upper left side it seems like it spread even more.  I feel like the longer you are in a flare, the further it can spread. The longer the remission, the more chance you can just keep the disease where it is.

Posted 6/19/2012 6:08 PM (GMT 0)

Uncertain Kiwi said...
I would say that for myself, I have lived with a very very mild discomfort off and on with my proctosigmoiditis over the last 5 - 6 years.

Now that I have adjusted my diet and stopped working so hard I feel better than I did before.

Hopefully this will keep me in remmission for a long time! Fingers crossed anyway.

For you ByeByeUc : Would you say that your energy levels are almost back to how they were BEFORE you got diagnosed with UC? I know you have had
surgery....

Seems strange but sometimes when I get down I think " oh well, at least I can take my colon out if it gets that bad" and it lifts my spirits!

Well I can't say my energy levels are where they were before UC and that's because I'm still dealing with anemia. Not sure why but I'm not absorbing iron all that well. So I'm still working on that but at least I'm UC free and not sick anymore. :)
Posted 6/20/2012 12:36 AM (GMT 0)
I don't think I could ever feel 100% safe from a flare up, even if I went 5 years in remission. I don't tihnk I would ever go 5 years in remission though. Since I was diagnosed, I've had many stretches of a few months, even a year or a year and a half in a stable remission but I have bad days that remind me that the UC is still there. I had a couple really bad weeks recently, I would almost call what happened a flare up but I am not sure 2 weeks qualifies as a true flare up. My major flares lasted months, the first one wouldn't calm down for a year or more.
Posted 6/21/2012 3:05 PM (GMT 0)
Like others have said, I don't think UC can be predicted. I've read countless good stories and countless bad ones. When I was newly diagnosed, one of the hardest things for me was the uncertainty of the future, not only when and if the disease will get worse but by how much. I still get upset by this, especially when looking at the medical statistics but there's no other choice other than to accept the situation.

Kind of reminds me of the episode of Family Guy where Stewie was driven insane because Brian said he'd punch him but wasn't going to tell him when...
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