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New Member

Date Joined Apr 2009
Total Posts : 19
   Posted 4/24/2009 4:43 PM (GMT -6)   
Hello All,
New here and am totally puzzled..
I'm diagnised with UC in Mar 2006 and its been 3 years of history.
I was asked to start with Asacol for 3 - 3times a day. It worked for some days and when i'm doing better my GI asked me to stop. I stopped
and i started flaring. He asked me to increase to 4 - 4 times a day. This worked upto 2007 April. But somewhere i feel that i was not cured
fully. I moved to a new place and changed my GI. He verified my colonoscopy results and asked me to move to Lialda (4 a day). I was doing
good for few days like 2 months and started flaring again. Then my GI asked me to add Canasa once every night. I did that and did better for
some months. Later i was forced to move to a new place and started seeing a new GI. After moving to the new place i started flaring badly
i.e. last year March 2008 and my GI and did a colonoscopy and kept me on prednisone starting with 40mg and tapering every 10mg every 5 days.
After reaching 10mg i started seeing some symptoms coming back. So GI asked me to goback to 20mg and stay there for 10days and taper upto 5mg
every 10days. I did that and saw some improvement. During the month of october , my GI asked me to move to Colozal from Lialda. I'm now on
Colozal 3 - 3 / day and Canasa nightly. My biggest cocern is "It is happening only for me or it is general tendensy of this disease". I will
be good for few days and bad for few days. by saying BAD i mean that seeing some blodd in the stool and toliet paper. But this BAD is not
like heavy blood floating like Diaheria. It is just like some blood and mucos.
Even the bowel movements are also not same each day. Some days if i go 2 times in the morning , i won't go until next day. If i go 2-3 times
in the morning., I will go 2 times in the afternoon (This happens if i have a mild flareup/blood in the stool).
I'm totall frustated and confused with all this.
I'm not sure if i need to ask my GI to keep on small dosages of prednisone for few days or stick to the current medication.
Is it harmful to my colon if this pattern continues without getting healed properly?
Can i say I'm in partial Remission?
When someboday says that I'm currently in remission for 1,2,3 years or so..Does that mean that there is no blood at a ll?
Another biggest problem is my weight gain. I'm not gaining weight at all. Not sure what was the reason?. I'm eating lot of food as needed and
still no changes in my weight.
I'm very thankful for all of you guys to read this long story.
Appreciate if you can answer my questions and give your suggestions based on your experinces with this disease.........
Please respond...
Thanks All for your feedback and I wish you all A vey happy and joyful weekend..


Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 4/24/2009 4:53 PM (GMT -6)   
I wonder why your first GI asked you to stop the asacol when you started doing better? Asacol is a maintenance drug so it's not surprising that if it was helping you then you stopped, you started to flare again....sometimes even with the maintenance med it doesn't guarantee a full remission but for many docs if your symptoms become more livable then to the doc that's a great thing (they need to walk in our shoes before they have the right to think that way eh).

It's not necessarily harmful to your colon, many patients go yrs flaring and still do okay (meaning they don't necessarily have to end up getting their colon removed), the biggest risk of having frequently active UC is after 10 yrs your risk of colon cancer slightly increases compared to someone that doesn't have UC or crohn's colitis.

My bum is broken....there's a big crack down the middle of it! LOL :)

Veteran Member

Date Joined Jul 2006
Total Posts : 2105
   Posted 4/24/2009 8:51 PM (GMT -6)   
harryking said...
But somewhere i feel that i was not cured

Just realize there is no cure known for UC at this time. The body can cure and heal itself if it so chooses but I don't see that happen a whole lot here with this disease, unless we just go into permanent remission.

If you start to do better on a maintenance med you really should just continue to take it. Just for future reference.

As far as good days and bad days.... That's just part of UC and there's nothing really abnormal there to those of us here. Monday I had to pull of the side of the road and take a poo beside my car. Tuesday I didn't go at all. Wednesday I went once. Thursday I went thrice. Today four times. I may go 12 times tomorrow, lol. I just don't go anywhere without toilet paper. Scouts motto, Be Prepared!!

Different people view remission differently. For me remission means no symptoms of UC at all, and if I did a fecal occult blood test there would be no blood there.

Partial remission would mean you are still in the midst of a flare but getting better. So, if you are a glass half full person you could say partial remission. I always like to say I am just one day from remission, lol. Which in all truth we all could really be just a few days from doing a whole lot better.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed

Regular Member

Date Joined Jan 2009
Total Posts : 307
   Posted 4/24/2009 9:09 PM (GMT -6)   
I agree with Dr-A, this disease is soooo upredictable...I was doing awesome all week and then earlier tonight I went out to get some food and like Dr-A, I had to pull over on the side of the road to run in to the woods and go (its sooooo frustrating).  There is really nothing you can do other then get a good GI, try a lot of different treatments and remain positive, which is the hardest part.

Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso

Regular Member

Date Joined Apr 2009
Total Posts : 249
   Posted 4/25/2009 12:32 AM (GMT -6)   
Hey Dr. A...not to change the subject but i was noticing on your profile you were diagnosed with proctitis in 99 and pancolitis in 08. I have been misdiagnosed and told I had crohns and then switched drs a few months ago and was told he thought it was more of UC. Had a colonoscopy yesterday and he said I had severe ulcerative proctitis....definately not crohns. He told me there was a 20% chance of it spreading to other parts of the colon but sometimes just stays there. Between 99 and 08 did you have symptoms to know it was spreading throughout?? Just wondering.

HarryKing I agree with pb4 and don't know why they took you off asacol when you were doing well on it. My dr told me that i would need to stay on a maintence dose to keep myself in remission once I get there. Although i was bummed about that I have been thinking about it and now realize that I rather take a few stupid pills then have urgency, stomach pain, lots of blood every time I go, and joint pain (dr says its from the UC or UP or whatever I have now!)
Diagnosed w/crohns in October 07
Taken off all meds January 08 because of pregnacy
Back to gastro Dr. January 09 (new dr.)
Diagnosed w/ UC instead; told should have never gotten off meds
4/23 Colonoscopy showing severe ulcerative proctitis
taking Asacol (6 pills x 2/day) and proctofoam maybe switching to azathioprine
Flaring still as of 04/09

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