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? for those in remicade remission

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Posted 9/9/2008 8:00 PM (GMT 0)
Sean, that's why it's called a support board. We try to avoid confrontations and arguements. There are plenty of other places to go for those interactions; this site is intended to be positive and supportive.

If we get fifteen UC-ers in a room, there will be 20 theories as to what causes UC, 18 as to what is the best treatment and 10 as to what remission is. So we have to be careful to keep things on a positive note. Really, I doubt that we as a group will ever answer those three questions anyway, so it's pretty much all an intellectual exercise.
Posted 9/9/2008 9:19 PM (GMT 0)

Lucky777....

It is COMPLETELY reasonable to expect remission from Remicade or any other drug, and by remission I mean back to 'normal' life. Why else in the world would we subject ourselves to these immunosuppressant drugs that are so bad for us?  You better believe that I expect to live my life free of UC symptoms if I am taking all this garbage.  When I started Remicade last year I achieved complete remission for 12 months, free of all the BS symptoms we know so well, and at that point I was ready to remove my colon myself.  Since then I have had one flare which is in the process of being under control by adding prednisone taper and moving up my Remicade by two weeks.  Stay strong and positive!  This past year was awesome- went on vacations to the beach x3, work full time as an RN, no blood/pain/urgency, go out to eat/drink with my friends etc.. now that I'm back in the middle of a flare again it sucks...but I know its a minor setback, and I will get back to normal eventually.  Go see your GI about Remicade, its been pretty good to me so far :-)

Posted 9/9/2008 9:22 PM (GMT 0)
Judy, understood. I was not looking for confrontation, I was looking for explanation. I don't feel that I was outwardly seeking dissension, just simple clarification. Still not certain that I got that, in truth.

I am here for the support, and the knowledge - there's a great deal of confusion that I know I experience along with everyone else here, especially those of us who have been experiencing this for less than 2 years. It creates the sky-is-falling mentality that does take time to get over, if in fact we ever do, in that search for comprehension. I do however get defensive outright towards perceived condescension, baseless comparisons, or cynicism regarding the potential for a healthy normal medical outlook, and I don't think that is wrong.

I apologize if I provided unwittingly any catalyst for negativity - that was most honestly not the intention, but in fact just the opposite. I can do without the negativity.
Posted 9/9/2008 9:39 PM (GMT 0)
UC Sucks -

Thanks for the strong show of positive disposition! I truly hope that it will in fact lead me to be sans-symptoms. And thanks for the reassurance that it can be done, as exhibited by you and others. A question though, do you have any indication as to what prompted your most recent flare? Curious to know what exactly may have prompted it to break through Remicade treatment.

And I sincerely hope that I can experience what you experienced during your remission. I am currently looking at all options available and also looking for information on surgery. If I can't beat the thing truly, then I want to have all the facts about removal long before I ever consider it as a possibility. But until them, I am exhausting all options - remicade here I come.
Posted 9/10/2008 12:10 AM (GMT 0)

my most recent flare was caused by a combination of the following:  (I think...)

1.sinus infection and then strep throat the following month- I took antibiotics for both which have made my UC worse in past

2.moving- nuff said

3.stress/lack of sleep-working and playing too much :-)

Posted 9/10/2008 1:39 AM (GMT 0)
I see. That is good to know though. If I can just get into remission (ya I know, if I can just.. blah blah) then perhaps I can really work at keeping my stress level down and pay as good attention to my health as I do now (never really cared to much before). It is very hard to keep my stress down, when the majority of my stress is directly attributable to UC.
Posted 9/10/2008 3:14 AM (GMT 0)
Sean, I am shooting for your remission. I want to be normal too and I hope some day I will achieve it. I don't want to settle for anything less.
Posted 9/10/2008 3:38 AM (GMT 0)
Reciprocated Mommafreds! I truly don't want to settle for anything less either.

I am trying to keep that positive vibe going, but it just gets really hard sometimes, especially with accidents and no social life. Hopefully Remicade will be my savior. Thinking about trying that spinach thing now to, of all things.. and god I hate spinach. I mean hate with that disdainful abhorrent flavor.
Posted 9/10/2008 4:05 AM (GMT 0)
Lucky777 - I agree with and admire your positive outlook. And, I too, am still hoping I can get into what I consider a true remission - a return to how I felt pre-UC (or at least very close to that).
Posted 9/11/2008 10:00 AM (GMT 0)

Eva and Sean you both have valid arguments.  I myself have wrestled with the whole remission question for soo long.  I have been in a flare for almost 5 years now, but since February of this year, I now have symptoms remarkably similar to Eva Lou.

I need around 3 hours in the AM before I can leave the house. But, I now have 4 or 5 BMSs in the morning as opposed to 10+ as has so often been the case. And there is still urgency.

But, there is rarely blood and it is formed. That is incredible. My GI has offically classed me as being in remission.

BUT, I am in no way back to my pre-UC self.  And, like Eva, I too think that I doubt I will get back to how it was before, ie - 1 BM a day with no urgency.  That is too much to expect, especially considering how sick I have been and how long.  Maybe I am now content to accept "second best"?  Some people wouldn't. But, its each to their own.

UC no longer rules my life the way it has done in the past. So, I am happy for that.  But, at the same time, I am of the opinion that I will never be back to "normal".

Posted 9/11/2008 2:56 PM (GMT 0)
Bravo, KSU! That's all I'm trying to say.... I doubt I'll ever be back to "normal".... maybe some will & that's awesome. I don't feel like I'm settling for less, or am jaded & cynical.... well maybe cynical, but it's hard not to become a little cynical when you crap your pants as a 37 year-old! eyes
Posted 9/11/2008 5:20 PM (GMT 0)
I've been on Remi for 6 months, complete remission, 100% normal habits.

Weight it up to over 200 for the first time ever, energy is fine.  My only concern is how I'm going to pay for it after RemiStart runs out.

* I still can't drink coffee, I can't even walk down the coffee aisle at the grocery store with out my stomache rumbling, It must be mental at this point.

Posted 9/11/2008 6:33 PM (GMT 0)
What is RemiStart?
Posted 9/11/2008 8:50 PM (GMT 0)
RemiStart is a rebate program that pays off whatever your insurance doesn't cover (in some cases); it's provided by the makers of Remicade and it lasts for a year.

http://www.centocoraccessone.com/patientassist/intro.jsp
Posted 9/12/2008 5:21 AM (GMT 0)
I see, thanks CD. That might come in handy, since I still don't know who's footing the bill for tomorrow. Me, FBCBS, or the VA.
Posted 9/12/2008 4:16 PM (GMT 0)
I was able to reach clinical remission from Remicade after using it for about 1 1/2 years every 8 weeks.  My last colonoscopy did not show any signs of disease at any level, including molecular. I have little to no symptoms on a daily basis. My last Remicade infusion was in Feb. 2008. I started taking 3 Lialda daily in April 2008, after my colonoscopy. I only have 1-3 mostly formed BM's daily. I eat a well rounded diet, but limit fresh veggies and fruits and I don't eat red meat or fried food (mostly a personal choice). I feel very fortunate to have come this far (from 25 + bm's a day). I haven't had to use a pain pill in months and I let my RX expire. So, there is hope. I hope to maintain my remission and stay on Lialda for as long as I can. If that means watching what I eat and reducing my stress, then that is what I do. I am able to travel and enjoy where I am at in my life.  I may never feel the way I did 10 years ago, but I am happy with the way things are at this point and I consider it Remission.

 

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