how long btw. diagnosis and remission?

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UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/8/2008 8:01 AM (GMT -7)   
one of the things I learned in grad school is to "manage expectations," meaning set reasonable expectations. I was thinking about that concept today, thinking that if I had more reasonable expectations for my UC I might not be so frustrated. I thought I would get off pred a few months ago and be perfect. it never struck me that I would have to "reach" remission, that it may not just come immediately. so, now I am wondering how long it takes others to get to remission. I know it is totally variable, but I am just curious, how long was it for you from the time you were diagnosed to the time you reached remission? and, were you sick during that period or were you just simmering a bit but basically doing ok? thanks.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


bk1579
Regular Member


Date Joined Sep 2007
Total Posts : 100
   Posted 1/8/2008 8:23 AM (GMT -7)   
UCinNC, I was diagnosed in March of 2007...I reached remission in the later part of October...Most of the time during my flare, I still had a functional life other than in the mornings...After morning were over and I had went to the bathroom 10 times or so, I was fine for the rest of the day...I felt pretty much normal...I'm still in remission and have finally gotten off of pred and actually have stopped my asacol...At first it was on accident...I couldn't remember to take it like I was supposed to (4/ 4x day), so when I noticed I felt completely normal, I just thought I would see what happened without taking any meds...I've not taken any meds in about 6 weeks or so...We'll see what happens and see how long this last...

28 Yrs old
Dx UC 3/07
4 Asacol 3x/day (when I remember to take them)
5mg Prednisone
Remicade (only had three infusions)
Fish Oil supplements
Multi-vitamine
 


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 1/8/2008 8:39 AM (GMT -7)   
It took me about 13 months to reach remission and a lot of different drugs tried.
I was pretty sick the whole time, anemic, pain, going to the bathroom about 10 times a day. I was able to work most of that time, but it was hard.
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
Eleventh Remicade infusion End of January


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/8/2008 9:51 AM (GMT -7)   
I don't want to be a downer, but it took me about 11 years to achieve "remission" and it lasted about 3 months. It was when i was on Remicade 400 mgs every 6 weeks after 2 years on it, I suddenly started going to the bathroom almost like a "normal" person and wasn't bleeding. I was watching my diet, exercising, doing yoga and taking fiber daily. My Mom passed away during that time and I have been flaring ever since. For me, I will have good weeks, or good days, but never been really good except those 3 months.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain, Glucosamine 500 mgs, Vitamin B


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/8/2008 11:37 AM (GMT -7)   
I have flared four times total. I said three in an earlier post but forgot to include the one in the first trimester of this pregnancy. Anyway... each time, I have started a taper of Prednisone. And each time, I have achieved remission within 7 days of starting the Pred.
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/8/2008 12:11 PM (GMT -7)   
It took me over two years to reach a state of relative health that I'd call remission. It took a lot of trial and error, but once I found the combination of things that worked for me, I haven't had a serious flare since... just some minor bumps in the road when I get complacent and start eating things I shouldn't.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/8/2008 12:21 PM (GMT -7)   
You shouldn't set remission as the Holy Grail. You are going to have ups and downs with this disease, that's a given - unless you are one of those lucky ducks that stay in remission for years. I have had only a small number of remissions in which I had NO symptoms. I have a wide array of symptoms in between. Have I ever felt truly ill from them? Yes, but usually only when the symptoms are severe. Flaring mildly, I feel normal - well normal as to be expected. Yes, it's great to be in remission and definately you should look forward to those feel good days. But it's also wise to file it away in your mind, that you may flare again and if that happens, you just have to deal with it appropriately. It's tough to wrap your mind around having a lifelong chronic condition - I've been there and totally understand.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


blessteve
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 1/8/2008 4:33 PM (GMT -7)   
17 years and I never been in complete remission.
Longest flare was about 5 years and could not
get above 154lbs. Now I simmer amd flare about once
a year.
Diagnosed Colitis 1990.
Current Meds Asacol x4
twice a day.
Pred for flares.
I still have my colon THANK YOU GOD!!!


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/8/2008 5:58 PM (GMT -7)   
I agree with Red, it's so true. Enjoy the good days, and on the bad days, look forward to good days ahead... that's all we can do really.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 1/8/2008 6:30 PM (GMT -7)   
It took me from Sept 2004 to January 2006. My body was sooo stubborn though. It took a bowel rest to get me there.
Don't focus on it. The more you stress about wanting to not be sick, the sicker it makes you. You'll get there, just give it time.

Sam

Diagnosed in September 2004

Currently on...4800mg Asacol, 25mg Elavil, Ortho Tricyclen and some immodium

"If you don't like something, change it. If you can't change it, change your attitude"

Maya Angelou


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/8/2008 6:44 PM (GMT -7)   
Symptoms started almost a year ago...have yet to reach remission, although I've been very close since about June/July. Last colonoscopy (in August) showed mild rectal inflammation, which was a great improvement, but I still want to be in complete remission, so it's frustrating. I noticed a little blood and some abdominal gurgling the week of Christmas...so not sure if I'm headed in the wrong direction again.
23 years old
Diagnosed with UC March 2007; yet to go into remission
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/8/2008 7:37 PM (GMT -7)   
Five years, but that is definitely not the norm. Colazal made me a little better. Azathioprine made me a little better. Prednisone or Entocort made me a little better. All three together cut my bathroom trips to 10-15 a day and allowed me to continue working. Finally got remission within 6 weeks with Remicade.

But again, that's very atypical.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 

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