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Posted 3/2/2011 9:33 PM (GMT 0)
Hi,

I just wanted to ask those of you who consider themselves in remission (for 1, 2, 3 years or more) if you never had any minor blip, i.e. some mucous or traces of blood on the stool. I had been in remission since September 2010, but had two minor flares: some mucous, some traces of blood, but just 1-2 BMs, properly formed, no D, no pain, no urgency. I used Rowasa enemas nightly for about two weeks or so and felt good again.
I guess my question is if I should worry about these minor blips (of course we worry!), if I should consider them flares, contact the GI etc. Is your long remission perfect?

Thanks, best to all,
RT
Posted 3/2/2011 10:13 PM (GMT 0)
Curious. I was in remission for 10 plus years -- I considered it remission -- despite the appearance of mucous and some blood on a weekly basis. Hell, as long as I am not on steroids or bilogics I consider myself in remission. The odd bought of blood mixed in with stool etc is no concern in my mind.
Posted 3/2/2011 11:49 PM (GMT 0)
Really? Wow! I guess I am still in the incipient phase, since I was diagnosed less than a year ago. Since I see some bloody mucous, I guess I worry that the inflammation is not resolved and might extend.
I am curious to see if other people who experienced remission for longer periods of time also had some minor "flares" like this.

Best,
R
Posted 3/3/2011 12:07 AM (GMT 0)
I haven't had a REALLY long remission but I did have a year or 1.5 year remission that lasted until January of 2010. During that time, I don't think I had any symptoms. I may have seen a little blood on the TP but it would have probably been due to a hemmie or a tear and not UC. A few times I got nervous and used my rectal meds 2x a day instead of just at bedtime. I remember when I started to flare up, it came on pretty quickly and it didn't start off mild. I was just kind of thrown into a huge flaree. I think if you're having normal bms, normal freuqency and no urgency, a little blood or mucus on rare occassion isn't a huge worry. If I saw it, I would probably double up on the rectals for a few days but I tend to be a worrier.
Posted 3/3/2011 12:07 AM (GMT 0)
I'd recommend asking your doctor their opinion, but for me, I'm in remission, and every now and then I'll have either strong urgency, little blood, very loose BM, or even go 6 times in one day, but then go back to normal. My Dr. says this is okay and only to worry if it continues for two, three, more days.
Posted 3/18/2012 11:15 PM (GMT 0)
I have only been in remission since Oct/Nov 2010 so up to 5 monthes and I have seen tiny amounts of blood but that is only if I stray from my diet. had some urgency with gastro, but apart from that all has been well. I hope I can comment about it at 6, 9 12 monthes and hopefully at 2 years+. I am lucky I am currently on no pharma medication and remain in remission.

mum of 3
Posted 3/18/2012 11:37 PM (GMT 0)
Remission for me is not flaring and 1-3 painless solid bloodless BMs a day. No real time constraint. I pretty much live in remission, whatever that may be. I eat pretty much everything I want except for the big no no's. Yeah popcorn I'm talking to you. I don't even know what normal is anymore. Maybe its just a figment of my imagination or a memory I can't recall.

I flare once a year now and it varies in severity. Back in the day I used to flare 6, 7, 8, 20 times a year. Odd thing is it started left side but over the years went panco. I guess it spreads. I don't take any pharmaceuticals except rare pred bouts. -sigh- But that's the only thing that seems to trick my immune system into chilling out.

I guess I should be dead by now after 17 years with no medications. Personally I'd rather be dead than put that stuff in me. Nature and my brain are taking care of me. So either I'm stupid or smart. Jury is still out on that one. I'm still fighting it though. Who knows maybe it will kill me tomorrow or I'll get to watch my son grow old. Idk.

Post Edited (ucwarrior) : 3/18/2012 8:10:00 PM (GMT-6)

Posted 3/19/2012 12:00 AM (GMT 0)
I went into remission for 7 years after my initial diagnosis and consider myself very lucky. Remission for me means no diarrhea, urgency or multiple BMs a day. I could eat anything I wanted without thinking about it I did have some 'minor' flares where I took some cortifoam for a 1-2 weeks to clear up some mucous or traces of blood in my stool. This happened 4 times over 7 years. All 4 minor flares happened during or after pregnancy so my hormones definitely play a role in my UC.

I consider these minor flares because they did not disrupt my daily life nor did I make changes in my diet. I took some rectal meds and continued with the Colazal and everything balanced out in a very short period of time. I consider a flare when I have bloody D, urgency, pain and multiple BMs so badly that I cannot function.

You know this type of flare when you are in it and cannot get yourself out :( Sorry I am a little crabby from the pred taper ;)))
Posted 3/19/2012 1:13 AM (GMT 0)
I had been in remission since September 2010, but had two minor flares: some mucous, some traces of blood, but just 1-2 BMs, properly formed, no D, no pain, no urgency. I used Rowasa enemas nightly for about two weeks or so and felt good again.
I guess my question is if I should worry about these minor blips (of course we worry!), if I should consider them flares, contact the GI

If you bring your minor flares under control by taking Rowasa on your own, then why would you need to contact the GI? You are already taking Apriso as a drug for daily maintenance.

This is only my opinion but I might be admittedly biased and uninformed about meds. I hope more people would chime in here to get different points of view. I think Quincy's and Kazbern's opinions might carry more weight here.
Posted 3/19/2012 1:46 AM (GMT 0)
I was in remission for 5 years once during the 14 years I had UC. During that time I did have periods with very minor symptoms (traces of blood or loose stool), and as long as the symptoms went away almost immediately (and they did), I still considered myself in remission.
Posted 3/19/2012 3:04 PM (GMT 0)
I have been in remission for about 3 years now (I didn't realize it had been that long... until I had to think about it for this post). I have had what I call "blips" - days where I have stomach cramps and loose stool, but only for one day at a time or maybe two once, and never any blood. I still always look in the toilet carefully to check for blood. I wonder if I will ever get over that!
Posted 3/19/2012 3:28 PM (GMT 0)
You should check in with your GI at least once or twice a year to make sure a steady supply of med refills will be available to you, as well as to make sure you're having regular blood testing done.

Regarding the enemas, they should be used to treat minor "blips", which are still symptoms of flaring...then tapered to every second night for a while, then to every third or to twice a week for maintenance.

Always treat early....you will be happy for the results when you look back, let's say....23 years later..as I have.

q
Posted 3/19/2012 3:52 PM (GMT 0)
I've been in remission for close to three years now and have had one instance where I thought I *might* be seeing some UC symptoms. I had to stop my twice-weekly enemas for 9 weeks while recovering from fistula surgery (the fistula was NOT thought to be UC-associated), and at the end of that time, I noticed an uptick in gas and some slight urgency. I used enemas nightly for a week or so, then every other night for a week or so, and all is well.

I do have symptoms related to food now and then, such as gas, looser-than-normal poops, but that's how I was even pre-UC.
Posted 3/22/2012 1:22 AM (GMT 0)
UCWarrior what is it about popcorn really I cannot eat it with out major consequences but that also applies to my favorite food pizza so I live with out them gladly in remission. But seriously!! such a little thing like popcorn can do so much damage.

mum of 3
my 4 year old daughter is making out her dog "just farted!" how cute I have tears of laughter rolling down my face. LOL while she goes "who laughed" "who laughed"
Posted 3/22/2012 2:32 AM (GMT 0)
LOL @ mum of 3. I love and hate popcorn at the same time. Pre UC I used to eat it like crazy. It was a staple in my family growing up. I still cheat now and then once or twice a year and feel guilty as those little razor blades sit in my stomach just waiting..

I pick on popcorn all the time because it was one of my favorite foods yet does the most damage. Curses to it! Curses!

...and curses to the movie theaters that smell up the place with that buttery goodness, and those evil people at work that like to pop it in the microwave. Nose torture.
Posted 3/28/2012 4:21 AM (GMT 0)
Yes the cinema as we call it here in Australia, when we go the kids all want popcorn of course and they have it I have my gluten free cranberry bar actually I normally cheat and have 2

Oh an my daughters dog(the one she said farted "Oooh! you farted is stinks!!!) was a tiny plastic toy that she plays with in her dolls house with her polly pockets.. absolutely hilarious and that was a week ago am still laughing at that one!!

I can smell pizza everywhere lately, it is just cruel.. cruel I say

mum of 3
Posted 3/28/2012 2:05 PM (GMT 0)
I have been in remission since about Jan 2011. Once in July I had a few days where I saw some blood and had some urgency. It may have lasted a week. I contacted my GI and added Rowasa enemas and it cleared up. Other than that I have been symptoms free. I think a minor flare here and there is not a huge concern however if you were still seeing blood/mucus weekly I would be concerned. It sounds like you had 2 small flares that resolved so I would not be too worried.
Posted 3/28/2012 3:42 PM (GMT 0)
I've been in remission for just about a year now. On rare occasions, I will get loose stools, a bit of blood, but then back to normal. That usually happens when my stress level is off the charts.
Posted 3/30/2012 9:10 PM (GMT 0)
I have had 2 remissions. Never saw blood in either.
Posted 3/30/2012 9:42 PM (GMT 0)
aubertica - I'm the same as you. If I see blood though, that means I am NOT in remission...I am flaring. I have long periods of being very close to remission and then I'll get a small flare, but so far my flares have responded well to Rowasa. But bleeding means you aren't healed and aren't in remission. However, i wouldn't worry too much or call your GI if you know how to treat it (e.g., increase your Rowasa).
Posted 7/7/2012 6:38 PM (GMT 0)
Hello barnsbury - I am strongly considering the Vedolizumab trial and have a lot of questions - would it be ok to email you?  Can you email me, my email is [email protected]?  I'd greatly appreciate it. =) - Priya
Posted 7/7/2012 6:45 PM (GMT 0)
When I'm in remission, I feel as if I don't even have UC at all. No blood, mucous or dietary restrictions.

The last time I saw a streak of blood, it turned into a full blown flare that lasted for 2-3 months. I probably could have gotten it under control much sooner if I had gone to my GI sooner and if I wasn't afraid of enemas.
Posted 7/7/2012 7:06 PM (GMT 0)
I flare once/twice a year since dx in 08. The worst was jan/2011 going into a severe flare while taking zero meds. Took a few months to get out of it. Started flaring a few weeks ago with the horrid smelling gas and lots of gut rumbles throughout the day. A day of partying brought the blood out for sure but i feel im already doin a little better hopefully. Been using enemas twice a day and upped vsl3ds. Got a script for 20mg pred but debating on starting it.
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