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UC - Medications - Your Suggestions - Thanq All

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Ulcerative Colitis
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Posted 11/11/2008 2:34 PM (GMT 0)
Hello All,

My UC started in Jun 2006 and I'm on the medications from then.
I was on Asacol at 4/ 3times a day dosage nearly for 1 1/2 years and using supposiotory whenever needed as advised by docter.
From all these years my UC is not in remission for long time.
If 3 to 4 months I'm fine then it use to flare suddenly.
Later docter changed my medication to Lialda 4 / day dosage. I'm on the same medication for almost 1 1/2 years.
Again the remission was not achieved fully .In the month of March 2008 i started flaring and docter kept me on Prednisone at low dosages but for long time

like 2 1/2 months(Tapering from 20mg -- down to 2.5mg). recovered from the flare and continuing the same medications from then.
I was doing good for 4 months. For the last 4 months i started taking probiotics for the first time (Acidophullus - 6billions/day -- 1pils/3 times a day.

each pill contains 2 billions). After i taking them i see little bit improvment in urgency and reduction in mucos.
But now suddendly i started flaring slighly. It is like on and off (4-5 days no blood,no mucos).Again suddenly 3 - 4 days with very thin blood and mucos.
Not sure if this change is coming due to food.
From all this I'm not able to understand what is failing from my end.
Is it the medications(Asacol / Lialda / Canasa) are  not working or some food is triggering the changes?
Very much confused and it is becoming very touch for explaining all this to my GI.
When ever i visit him, i will be fine and if he asks me r u doing OK. i should say I'm fine, bcas i will be doing fine at that time..
If i say some times I'm not doing OK, he says that is the problem with this disease, unpredictable.
At this junctute I'm feeling very sad and not able to find out the right solution..

Please, suggest me some solutions or advises to keep my UC in control.
I know it is different for all people. But your inputs are highly appreciated.
Thanq very much for reading my long story...

Thanks in advnace for all your valuable suggestions and guidance thru this Wonderful Forum !! Healing Well

Posted 11/11/2008 5:26 PM (GMT 0)
is your UC throughout or limited? Where exactly?
Posted 11/11/2008 5:55 PM (GMT 0)

Hi Quincy,

My UC is limited and left-sided.

Thanq

Posted 11/11/2008 6:35 PM (GMT 0)
I also have had uneven success with mesalimine.  I personally do not want to move beyond them to more powerful drugs so my GI has given me scripts for asacol, rowasa and canasa with the instructions to try different combinations until I find one that works best for me.  I have never found any food to blame for the cause of blood or mucus.

I notice you are not taking rowasa enema which I consider the star player in my arsenal.  It works faster and goes higher up than the canasa and just seems to get the job done.  I really recommend you try it if you can get your doctor to agree.  I still have colitis symptoms (pain and some blood and mucus), but they are not severe and my energy level has really shot up.

Posted 11/11/2008 9:56 PM (GMT 0)
Hello All,

Any more suggestions from anybody else.

Please give some advises which can help me out of this nasty loop.

Thanks in advance

Posted 11/12/2008 2:15 AM (GMT 0)
I can relate to your frustration. It seems I make some headway and then all of a sudden, it hits me again out of seeminly nowhere. As Madabs suggested, I would try the Rowasa enemas. They do seem to help more when when my symptoms are worse than when I feel more normal. I would suggest trying a probiotic. I have used the Digestive Advantage brand. I have taken the one for Irritable Bowel and it has helped. I just ordered another one from Digestive Advantage for Chron's and Colitis. I'm hoping that one will help me out even more.

I also notice that soda bothers me. I don't drink much of it, but when I get a craving, my gut starts to rumble and I wish I hadn't tried it. Maybe stay away from carbonated beverages?? As for foods, a lot of sugar and fatty/fast foods set me off. I avoid those as much as I can.
Posted 11/12/2008 4:35 AM (GMT 0)
I know this disease is frustrating beyond words.  It's hard not to keep searching for exactly what is causing the disease and what will cure it, but doing that can just make you more anxious and the disease worse.  If there ever was a disease that makes people chase their tail (pun intended) this is it.

These are some things I've tried and am having success:  the spinach and sunflower seed diet;  a good probiotic, primadophilus reuteri (regular acidophillus was not sufficient) plus activia yogurt daily;  metamucil fiber wafers;  using a hydrocortisone enema. 

Try keeping a journal of what you eat, if you're bleeding, etc.  If you bleed only once every few days, there may be something you're doing the day before that you can change... something you eat, or some med, etc. 

Most of all, try not to drive yourself crazy!  confused  

 

 

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