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When is it remission?

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Ulcerative Colitis
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Posted 4/8/2013 12:06 AM (GMT 0)
How long do you need to be without blood, mucus and d in order to be considered to be in remission? Would you consider it a remission while on steroids or only on maintenance drugs?

I'm getting really close. Haven't bled in a week, stools are formed, mucus has long stopped. I'm on Uceris, Imuran, Colazal and Apriso. Had my last dose of Pred today.
Posted 4/8/2013 12:13 AM (GMT 0)
I've actually never made it to a place where I had no blood. One time I was off Prednisone for about 3 weeks. For me, remission would be no blood, no mucus, no urgency and to be off of Prednisone.
Posted 4/8/2013 12:15 AM (GMT 0)
maintenance drugs only, with no abnormal substance in stool (Mucus and blood etc).
Posted 4/8/2013 12:30 AM (GMT 0)
Agree with Steve. I still have urgency in morning because lots of scarring probably after so many years of UC making a battleground in my colon. :)
Posted 4/8/2013 2:51 AM (GMT 0)
I always know remission is close when I am gaining weight. I've packed on about 8 lbs the past 3 weeks. As for when I am in remission. I just feel good and don't think about UC. If I still have some symptoms like loose stools or gas, I still consider it remission since I've had IBS for so long, too.
Posted 4/8/2013 3:46 AM (GMT 0)
I think remission is when you are living normally. It takes a while to get there but it's close to the way you felt before you were diagnosed.
Posted 4/8/2013 4:32 AM (GMT 0)
When you can go out without having to worry about needing the bathroom or feeling sick under any circumstances
Posted 4/8/2013 5:15 AM (GMT 0)
i'll ask the question again ........ just because i'm like that.............

why does it matter ?

Posted 4/8/2013 5:58 AM (GMT 0)
Steve's got it down well. This seems like a disease where maintenance drugs are always needed.
Posted 4/8/2013 10:03 AM (GMT 0)
When you don't have to withhold food and drink in the morning. you have something you want to do that day (like take your kid to school) and you don't want to have an accident or spend an hour s in the bathroom before hand. That's what it would mean to me.
Posted 4/8/2013 10:16 AM (GMT 0)

soystud said...
i'll ask the question again ........ just because i'm like that.............
why does it matter ?

Because if you are not in remission you need to evaluate if your current treatment is bringing you towards it and perhaps change treatments. Not being in remission is damaging to your body.

Remission is not always an option but it should always be a goal.
Posted 4/8/2013 10:39 AM (GMT 0)
Joanna I'm glad you're feeling better. You think the diet has helped with that? Are you still doing the SCD yogurt?

soystud said...
i'll ask the question again ........ just because i'm like that.............
why does it matter ?


I don't know how you feel but I think "death" every time I see blood in the toilet. It makes me depressed. I don't want to see it anymore. That's why it matters to me.

I can deal with food induced diarrhea but I cannot deal with inflammation and the fear that any of those ulcers down there may develop into colon cancer.

It's also no fun to me to have to wear diapers and rushing to the toilet no matter where I am.
Posted 4/8/2013 10:48 AM (GMT 0)
I don't know what remission is. I had nearly normal BMs for a few weeks last fall, but that was as close as I've been since I got UC.

I'm bleeding, but I'm a great blood maker, so I am not anemic right now! As long as I make more that I lose, I'm ok with seeing blood.

Remission is when you feel sexy. I never feel sexy with this stupid disease.
Posted 4/8/2013 11:15 AM (GMT 0)
i think it's hard to define. for me, i'm still on prednisone (even though it does NOTHING, i'm in the tapering process). Remission definition would be individual based, but major symptoms like urgency, bleeding and mucus would all be long gone for a minimum of a month. In addition, steroid use would be at a 0 level. Things like maintenance drugs or biologics would be acceptable as I feel that they can maintain remission and may very well be necessary on a case by case basis. We have to remember that our bodies won't heal overnight from this, the damage done takes in many cases months and months to heal, and from personal experience, bowel rest is crucial in the process. just my 2 cents....
Posted 4/8/2013 1:48 PM (GMT 0)
I too believe that remission should be a goal. However, some people get discouraged - which is totally understandable. UC is not an easy disease to heal; think about it - the environment in which healing has to take place is quite volatile.

I have never had a true remission until I started on Remicade. I didn't even know it was possible to be honest. I would get to that "semi-remission" state over the years but my UC always came back full force. So to me, remission is how you feel while only on maintenance meds (oral or rectal) and I view steroids as band aids. When you get to that point where UC is not on your mind all the time and you can get out there and not worry where the bathroom is. Some can view that they are in remission for a few weeks to a few months of being symptom free.
Posted 4/8/2013 1:54 PM (GMT 0)
maybe that should be my goal - feeling sexy !

forget that remission crap -

Posted 4/8/2013 2:29 PM (GMT 0)

bananagirl said...
I always know remission is close when I am gaining weight. I've packed on about 8 lbs the past 3 weeks. As for when I am in remission. I just feel good and don't think about UC. If I still have some symptoms like loose stools or gas, I still consider it remission since I've had IBS for so long, too.


Bgirl,

Same here. My first indication that remission was near was that I stopped losing weight, then actually started gaining it back again. It was the first time since high school that I would get on a scale and hope to gain some weight, or at least stop losing it. (During my flare I had lost 5 pounds a week for over 50 pounds.)

Now when I receive even a hint of symptoms I increase my supplements and become more strict with my diet before things get out of control.

I am very impressed with your remission since I remember that you had one of the most stubborn cases of IBD on the forum. Nothing seemed to be helping you, but now you are in remission. Congratulations.

Could you sometime share with the forum how you did it? I don't see a lot of meds in your signature and I am curious what put you into remission and how you remain flare free. I am sure that we can all learn something from your experience.

Thanks
Posted 4/8/2013 2:33 PM (GMT 0)

soystud said...
maybe that should be my goal - feeling sexy !
forget that remission crap -

Speaking from experience: yes, it should.

If you're able to maintain things and capable of going out, enjoying yourself and meeting people without worry about your health, that's really good enough, no? I mean what else would make one feel "sexy?"
Posted 4/8/2013 2:37 PM (GMT 0)
If you are on Prednisone then it's not remission yet. Remission is when you are only taking your maintenance drugs, no blood, no mucus, normal, formed bowel movements, no urgency or cramping. And if it's been a while since you had a remission, then you will remember once your body (and mind) actually starts feeling well again. Hope it's right around the corner for you! :)
Posted 4/8/2013 2:40 PM (GMT 0)
hey babe, is that march 10 this year ?

have you cut out all grains or just gluten ?

what does your remission look like ?

do you feel sexy ?

;-)
Posted 4/8/2013 2:43 PM (GMT 0)
hey bb - aren't pred and mesas the same thing = anti inflammatories ?

why is one ok for r, but the other not ?

and who made that rule ?
Posted 4/8/2013 2:44 PM (GMT 0)
Haha, well it's probably sexier to maybe not go into intimate IBD details. YMMV though!
Posted 4/8/2013 2:49 PM (GMT 0)
imo less than 30mg prednisone and on the other drugs and not being symptomatic is remission for some. less than 30mg prednisone is hardly therapeutic, its just something you need to be on.
Posted 4/8/2013 2:52 PM (GMT 0)
"hey bb - aren't pred and mesas the same thing = anti inflammatories ?

why is one ok for r, but the other not ?

and who made that rule ?
--------------------------------------------------------------------------------
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what do you mean who made that rule. I agree with Marianne 100%. Predinsone is like getting the Defibrillator and calling it a maintenance med. No, predinsone is to help induce remission and then to have the maintenance drugs, maintain you.

Who ever wants (well wants is not the right word, but decides) to be on prendinsone non stop, every day EVEN at small dosages for years and years is stupid. At the end of those years. your body will be in worse shape....

But common, soystud, you knew that....
Posted 4/8/2013 2:55 PM (GMT 0)
^^..DITTO!!
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