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Hi it's Tina C. again, have a few new reply postings on here. I'm recently diagnosed and I am now feeling better, but my question is...... How long when symptom free is it until you know if you are in a remission? 

And can I expect more flare ups over time, even if I am on some kind of meds? I know that they can only keep me on prednisone and Lialda for 6 months or less, then what?  Another med? Or just a big flare-up? Hmm

And since I have only been diagnosed for 2 weeks ( symptomatic 4 weeks, until last weekend) does this mean my symptom will get worse with each flare up, and will I get food problems other than coffee as you all described over time? 

I feel right now like I have my life back, where as just early last week I was ready to throw in the towel, roll over and give up......is this new found health a farse, a temporary taste of freedom and feeling good to tease me.......until I get hit again, or will it last?

Does anyone know?  Some of you have suffered with UC for years, how has your cycles of health been?  I'm unsure and a little scared to believe in today........for fear that it will soon return...but I am trying to enjoy my normalcy to the max at the same time...it's kind of like, when I open my eyes in the morning, I never know if today is the day it will be back...I still have 2-3 "jogs" to the bathroom first thing in the a.m., but at least I'm not knocking over the dog or hurdling over my toddler for the bathroom anymore.........and no more "REDZONE" cramping and accidents...I'm scared to believe.......any answers on what I can expect long term?

Thanks

Tina C.

 Reply posted for FemaleN2Iron2.

Hi, again!  I just re-read your post and realized you were still in the "trial and error" stage of finding the right medication for you.  Has your doctor talked with you about immunomodulators? 
Some people seem to do well on just the ASA drug category, (Asacol, Rowasa,  Pentasa, Sulfasalazine, etc.)  but then there are those of us who require something a bit stronger.  The thing about immunomodulators is they will take a few months to build up in your system ( 4 months for me) so you would remain on Prednisone until such time as the doctor feels you can slowly be weaned off of it in order to see if the immunomodulators are working yet. I hear there are new drugs out so maybe your doctor has other plans for you.  I can say that there IS hope and now that you have been diagnosed as having UC there is a lot of hope for your future health!   I feel GREAT at 50 years of age, having lost weight (I used to weigh 182 and now am at 140 and keeping myself fit and healthy through diet and moderate exercise.)  I hope this gives you hope for your future health!

Val

 Reply posted for FemaleN2Iron2.

Hi!  I was diagnosed in Jan of 2002 with severe ulcerative colitis, and after trial and error with other drugs, am now in remission on 6-MP and asacol.  I do have mild relapses, but non nearly as severe as it was before drug therapy began.  Most of my relapses have been only if I forgot to take my meds, and one time when I thought my doctor said I could cut back on the 6-MP (since I was doing so well, I  asked him if I could cut back on the dosage and he said, "Yes, we can try that..."  but I guess he meant under HIS strict guidance.)  I thought I could do it on my own and tried cutting back just one half a pill a day for a week. Apparently that was a big mistake, because  I ended up seriously ill and in the hospital for 3 days for blood transfusions and fluid replacement.)  In other words, make sure you get your GI doc's instructions before modifying any of your meds, even if you feel better and think you don't need to continue on such high doses.  For me, it's pertinent that I stay on the prescribed dosage and to verify anything my doctor says with him before taking action. (Makes sense!)
So, to sum things up, any relapses should be mild in comparison to the symptoms you had before beginning medication.  They do say that everyone is different, though, and only time will tell. If for any reason you do have a severe relapse, the doctor will probably put you on Prednisone for awhile.  This always did the trick for me, but you do want to avoid having to go that route since Prednisone has some bad side effects.
Anyway, I wouldn't worry too much, if you are in remission. just focus on each day and appreciate it for what it's worth!  Good luck to you....

 Reply posted for FemaleN2Iron2.

I was diagnosed in 1989 and had a period of remission for seven years, with a few one-three day flares, but nothing major.  Now....I am nearing forty and have been in a flare-up for sixteen months and am on Remicade, predisone, Lialda and more!!!  My symptoms are finally starting to slow.  I had some major stressors last year and that sushi volcano roll last December at a birthday party...anyway, what I cannot control I manage.  It cramps things and some friends get miffed you are not active as usual.  I am looking for a symptom free remission again...stay positive and keep active.

 Reply posted for FemaleN2Iron2.

    It's difficult to reallly say what any one person will experence for remission. As such there really aren't any stead fast rules for how long s, or what exactly the nature of your remision might be. That said, I can only offer some insight from my own  4 years since being diaognosed. For me, I had a long diognosis year and then the following i was able to go into remission.  Then my first year of college I got hit with a major flare which more or less nixed my chances of staying away at school. Since then however I have been in remission again and my life is kind of on track again as far as school goes now that im going locally. So I have had a kind of  an on and off cycle going myself, but that isnt always the case sometimes it can be years even before you experinces a flare up.
    I guess all told I can't really tell you what to expect necissarily in terms of how long youll be feeling "healthy" but i can tell you that it is important to watch the signs your body gives you, and repsond accordingly. Also try not to worry too much about how long youll be feeling good, and instead just try to take the days as they come and enjoy when you are feeling good instead of dreading how long before you feel bad. I say that mostly because from my own experience even when im in remission like now i still have goodd and bad days so its important for your mental health as well as your physical that you try to take care of yourself when your feeling good as well as bad and try not to let worry about how long keep you from enjoying the fact that you DO feel well.

 Reply posted for FemaleN2Iron2.

Hey - I don't have UC, however my husband was diagnosed in 1996 only a few months after we were marrried.  At the time he was almost hospitalized.  Since that time, he has been on a variety of medications, and had many flares.  I wish I could tell you that one medication takes care of it for everyone and you will be fine forever, but that probably is not the case.  However what I can tell you is that he is doing really well.  He always says that going into remission works the same as going into a flare.  You don't notice it day by day but all of the sudden you realize that you feel better!  What I can say from experience is enjoy the remission and try not to think about flaring again.  But if you feel yourself slipping go to your doctor right away - don't wait and think it will get better on it's own.  Currently, after all the oral drugs have eventually failed, he is on Remicade IV Infusion every 7 weeks and has been flare free for more than a year and a half.  There is hope!!!

 Reply posted for FemaleN2Iron2.

Hi Tina, well I dont have UC but I do have Crohns and I think it is just different for everyone.  I have been diagnosed almost 5 years and well I would say for most of that time I have been in a flare but then I know people that once on meds they never flare again.  I have been on so many different meds but they just dont seem to work long term for me.  I can tell you this and that is get off of the prednisone as soon as possible.  I hate that stuff.  It makes you want to eat all the time and causes moon face and the longer you are on it the harder it is to come off of it.  I wonder why more dr's dont seem to order Entocort more often.  I dont know but I do believe it is for both UC and Crohns.  At least with the Entocort you dont get the side effects you get with prednisone.  I will keep my fingers crossed for you and hopefully your' meds keep you in remission for years to come.  Kim :)