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Ulcerative Colitis
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Posted 12/21/2008 1:18 AM (GMT 0)
hey guys it has been a long long time since i last spoke in here. i was put in the hospital back in 2006 for my uc. was in remission for 2 years until this month. now i am flaring again, red stools etc. doc wants me to try lialda and come off of sulfasalazine. EXPENSIVE! WE'LL SEE HOW it goes. if the bleeding is not under control by next week he wants me back on the preds. man i hate preds. today just started canasa 1000mg, currently still talking sulfa, next week i get my rowasa enemas to on top of the colocort enemas i am taking at bedtime now. i will be in and out more checking in and reading some of your stories.
Posted 12/21/2008 3:04 AM (GMT 0)
I am new on here. Was diagnosed about six years ago with UC. It took weeks before they figured it out and I lost about 25 pounds before ending up in ICU. That flare lasted from May until October. Lots of blood, fever but no pain. The ER kept sending me home telling me it was food poisioning.

The second flare was three years later. Extremely bad pain, lots of blood, major weight loss. I was on 60 mg of the Pred. With no immume system I had a urinary infection that went to the blood and had sepsis. Blood pressure 50 over 40 and very sick. I had IV's in both sides of my neck and in both arms. That flare lasted from June until around January. I think I was up to 16 Asacol and 60 mg of the Pred. I was so jammed up on the steroids that I would be up painting woodwork in the house at 6am on no sleep.

Six months ago my GI had switched me to Lialda. I took two pills twice a day. I started noticing my stomach making all kinds of noises and it felt like it was moving around. I told him in October and he switched me back to Asacol 6 daily. Last week I started with the severe stomach cramping and as soon as I put a bite of food in my mouth I have to run for the bathroom. I can't believe it. Just wondering if switching the meds around flared me up. This week he has me up to 12 Asacol, 3 Entecort (never tried before), and a Rowasa at bedtime. I haven't gotten any worse or full blown like before but I am no better.

What are your thoughts on Lialda? Anybody have any experience with Entecort? I just needed to vent.
Posted 12/21/2008 2:47 PM (GMT 0)
     Wow Boxermom...you are one LUCKY lady to be here and I will tell you why.  I had a very good childhood friend who had Crohn's for over 20 years.  She took herself off the prednisone too quickly about 12 yrs ago while flaring and developed Addison's Disease.  I don't know how much medication she was taking but she did manage to keep down a full time job working in a bank...I have no idea how she managed that.  A week before Christmas of 2005 I received a Christmas card from her and she said the Crohn's was not giving her a problem but she did have a terrible back ache.  A week later I received a phone call from her daughter telling me she had passed away.  Here, she had a kidney infection which was giving her the backache.  By the time she went into the hospital she had sepsis and they couldn't save her.

     I have UC and was twice hospitalized.  I've been on 6MP for five years now but still get yearly flares and my white count is down to 2.6, so I am very concerned about my immune system.  My GI doctor said he doesn't want it going down any lower....ya think?  Last year he told me he didn't want it below 3.5!  I cut the 6MP down to 50mgm.  I have no experience with Lialda and my doctor never even mentioned it to me.  He has pushed Remicade in the past by I was exposed to the TB virus years ago and simply refuse to take it.

      Please take care.

Posted 12/21/2008 5:42 PM (GMT 0)
I have been on Lialda for a couple of years now. I take 2 pills each morning and it works for me. I sometimes do hear my insides rumble, depending on what I eat. It doesn't bother me, though. I usually stay away from fried foods and try not to overeat. I have had great results with Lialda after being on several other meds in the past! (Pentas, Colazol, Canasa)
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