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Latarina
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/24/2008 5:29 PM (GMT -6)   
 
Hi,
 
When I was 15, I got very sick with UC.  I went through the whole drill, was put on Prednisone and Asacol, pain, dieting, etc.  Within several years, I got off of Prednisone and I've been off since, with no symptoms whatsoever.  That was...I think about three, four years ago.  I'm 22 now, and still taking Asacol, and am completely healthy.  Here comes the tricky part.
 
I'd like to get off of it.  One of my doctors said I would have to take it until my intestines got better (two years max he said) and then I could get off.  My current doctor (the first one was for kids, since I was 15 and all that) says to stay on it.  I've looked around a bit and they say UC can come back to you, so KEEP ON TAKING DRUGS TO KEEP HEALTHY.  Personally, I don't like the idea of drugging myself my whole life "just in case".  For years, I've been perfectly fine.  I eat whatever I want, go normally, and all that...
 
Does anyone have any experiences similar to mine?  I'd like to get off this stuff, but I honestly don't know who to trust anymore.  The Docs all say different things, not to mention the inhumane business aspect of the whole thing.
 
Anyone?  Even the slightest would be much appreciated.
 
Lots of luck you guys,
 
 
Kat.

chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 3/24/2008 9:43 PM (GMT -6)   
I don't know exactly what to tell you because I know how you feel about wanting to get off of the meds. BUT, if it's true that the Asacol is holding you where you are, I say stay on it. I know there is no way to tell what exactly is holding you where you are but let me tell you, you don't want another flare. It's not worth it!

Becky
29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 7.5 mg!
-Re-trying Imuran; I'm at 100 mg now...but it's making me so tired!
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 3/24/2008 10:02 PM (GMT -6)   
Most will stay away from this post b/c one of the most important factors to staying healthy is to listen to your doctor and take your prescription medications regularly as you are supposed to. On that note, you need to listen to your Dr and to your body. I have had Severe UC for over 3 years and that is way too long if you ask me. But what I have learned is how to eat and how to listen to every tiny symptom my body has.
                                                                                         
28/M/TX
Severe Colitis (pancolitis) since January 9, 2005
currently:  I must say Under Control, 1 formed BM/day
RX/day:  Tapered Prednisone completely January 2008. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
(believe me I know my body and do not recommend doing this!!!)
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it. For Lent I gave up peanuts, sweets, and fried foods...
 


hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 3/24/2008 10:40 PM (GMT -6)   
there are several people who have tried what you are suggesting and totally regret it.
felt great, ate normally, weaned off the meds and eventually flared again. but this time around the same meds wouldn't work for them.
think long and hard about your options.
29, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/24/2008 11:34 PM (GMT -6)   
The thing is, there's really no such thing as "after UC" unless you have your colon surgically removed. Some very small percentage of people never have a second flare after starting treatment, but most of us do flare from time to time, even with medication. Your UC is still there, just kept in remission, most likely by the Asacol.

It's your body and your decision, but consider all the risks before trying this. You'll see numerous people here who have gone off their meds and done well for months to years, then flared again. In some cases the UC has spread from just the left side throughout the colon, often they don't respond well to the medications quickly, and may have diarrhea, pain and bleeding for months or years.

If it's worth the risk to you to try stopping the Asacol, definitely taper it off slowly - maybe drop a pill every three to four months to see how your body reacts.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Latarina
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/25/2008 12:53 AM (GMT -6)   
Thanks for the input! It makes me wonder a bit about what I have, though...I don't seem to have the reactions that everyone else here does. But I'll take it into consideration. I'm going backpacking this August, so I won't be getting off it anytime soon, in any case.

Thanks so much!!


Kat

braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 3/25/2008 5:42 AM (GMT -6)   
How many Asacol are you taking. I know how you feel...I cried and cried and then got mad when I found out I have to take drugs for life. BUT...I had UC throughout my colon to start with now I only have it in my rectum and a very small portion of my sigmoid. I have been taking a maintaince dose of asacol...mainly 2 pills a day...should have been 4 pills a day. I am in the middle of a severe flare. first one in 5 years. I am on 3 asacal 2 times a day. and also pred.
my suggestion is Stay on the meds. It won't hurt and will certainly help.
jan
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 3/25/2008 6:24 AM (GMT -6)   
I was dx'd with left sided UC at 18 and felt the way you do now when i was 23. I did stop my asacol (it was the only med at the time) and was fine for 5 years. Then I started flaring worse than ever. My UC had spread to my entire colon and two years later i am still trying to get out from this flare. My GI told me that the asacol was meant to help stop the spreading of this DD and if I had stayed on my UC may not have spread and my flare may not have been this severe. Looking back I would much rather take a handful of pills every day than go though this again.

I also want to add that asacol isn't really druging yourself. It works like a topical med. for your colon. It doesn't get into your bloodstream as pred, imuran, or other drugs do.

Liike i said. I had five fantastic years of remission with no drugs. Was it worth it? no. The last two years have been hell. Not only for me but my husband, family and friends.

I firmly believe that we learn best by mistakes but I hope you think about the consequences a lot. make a list. talk to others, doctors, family. If you do decide to stop think about a taper. Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


Latarina
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/25/2008 6:32 AM (GMT -6)   
i'm taking 400, 3 twice a day.  it was all gone since about 4 years ago.  i haven't had anything since.  i think i may still try in a year or so.  i need to talk to my doc and see if i can find out if i really did have what he said i had...because it was a different story years back.  good luck to you, though!!!

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 3/25/2008 6:47 AM (GMT -6)   
My signature says it all.I hadn't been very med compliant the last few years.Diagnosis went from distal disease to Pancolitis.I'm pretty sure that's my fault.Glad to say I'm back in remission now and intend to stay there,by regularly taking the tablets.

It sounds like you're unsure if you have the correct diagnosis?I would pursue a follow up on that,perhaps with a different doc.Please at least stay on the meds until then.If it turns out to definitely be UC,I really wouldn't recommend going without a maintenance drug.All the best with whatever you decide to do.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;Pred,6 week tapered dose,starting at 40mg.Pentasa 2 x 500mg 4 x daily.
Got Ryche?

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