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Ulcerative Colitis
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Posted 3/16/2008 3:08 PM (GMT 0)
Hello,

I am new to this website and feeling quite frustrated.  mad I have been struggling with UC since 2005.  Tried colazal, canasa, prednisone, and 6-MP.  My liver enzymes elevated on 6-MP and I was taken off it.  I am now on prednisone and nothing else for UC.  I was feeing great, bm's normal while on 6-MP and up to now.  MD dropped my prednisone from 40 mg to 30 mg to 20 mg and my bm's are now diarrhea since yesterday.  I seen my MD last week and he gave me 2 options- Remicade or eventual j-pouch.  I am struggling with what to do.  My daughter is getting married in October and I trust my doctor, but I am not sure should I get a second opinion, or go on Remicade, or what...  I don't want to be in a flareup for the wedding.  Please anyone, advise.  I am so uncertain at this point, as I was feeling good until I seen my doctor and he gave me my treatment options.  Help!  

Posted 3/16/2008 3:18 PM (GMT 0)
Sounds like me, I tried many medications during the first year of having UC and nothing worked, not even prednisone. If you want to feel well by October I'd say try the Remicade. Make sure your insurance covers it because it's really expensive. It has been a miracle for many of us on this site.
James
Posted 3/18/2008 11:42 PM (GMT 0)
I'd certainly try Remicade before going for surgery if I were you. I was at that point and the Remicade really worked well for me. If nothing else worked for you then your insurance ought to cover it.

Meesh
Posted 3/19/2008 1:44 AM (GMT 0)
Hi Shellybelly, and welcome to HealingWell. I too was very sick when I tried Remi. It hadn't even been approved by the FDA for UC, but I decided to go ahead with it and three years later I'm still happy I made the decision. I'm feeling better than ever. It's a simple procedure, and many of us find it rather relaxing...good down time! Let us know if you have any other questions.
Posted 3/19/2008 6:53 AM (GMT 0)

shellybelly said...
Hello,

I am new to this website and feeling quite frustrated.  mad I have been struggling with UC since 2005.  Tried colazal, canasa, prednisone, and 6-MP.  My liver enzymes elevated on 6-MP and I was taken off it.  I am now on prednisone and nothing else for UC.  I was feeing great, bm's normal while on 6-MP and up to now.  MD dropped my prednisone from 40 mg to 30 mg to 20 mg and my bm's are now diarrhea since yesterday.  I seen my MD last week and he gave me 2 options- Remicade or eventual j-pouch.  I am struggling with what to do.  My daughter is getting married in October and I trust my doctor, but I am not sure should I get a second opinion, or go on Remicade, or what...  I don't want to be in a flareup for the wedding.  Please anyone, advise.  I am so uncertain at this point, as I was feeling good until I seen my doctor and he gave me my treatment options.  Help!  

Dear shellybelly

  Im new to this website too.  I just joined.  Let me tell you.  I had been bleeding for 3 years straight until a year half ago they finally diagnosed me with UC.  As of 3/18/08 I was taking Remicade since last year when I was hospitalized for a month.  Secretly since Christmas I had a flare-up of bleeding again and I never told anyone until last Remicade treatment because I thought it was to work.  I was at the ER yesterday again and they told me to wait til i see my Doc again here on thurs.  Well, I have and am on about 13 different meds.  ASACOL, ENTROCORT,CANASA, COLONORT(?rectal steriod),6-MP,back on PREDNISONE AGAIN ( i was off and on it for years for all kinds of other problems and I just became a miserable ***** along with gaining 20+lbs)...so Im with you too.  They are trying to put off the pouch but what do you do....Im tired of bleeding and my ass is always sore and the ordor I have is also embarassing.... sad confused

Posted 3/19/2008 7:42 AM (GMT 0)
Welcome to HealingWell, Shellybelly. I'd also suggest trying the Remicade. I was in flare for five years and had tried all the drugs. Each helped a little, but all together they still didn't enable me to have a normal life. I've now been on Remicade for two years, and it has truly given me my life back. The way I look at it, if I decide I don't want to continue the Remi (or if it quits working for me) I can always have surgery later. But surgery is forever, so I prefer to exhaust every medical option before going there.
Posted 3/22/2008 2:13 AM (GMT 0)
No, you don't have to be on any other meds to take Remicade. Most of us do continue taking a 5-ASA like Asacol or Colazal, and a lot of doctors will give you an antihistamine such as Benadryl or Zyrtec and perhaps tylenol right before the infusion.

Don't worry, if the Colazal doesn't do it for you, you can always start the Remicade. If necessary, you can always do another short course of Pred. All of the decisions you made are reversible, so just relax and see what the next weeks bring.
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