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Posted 2/12/2008 10:15 AM (GMT 0)

Hi everyone!  I have U c for 10 yrs. now. In a flare up for past 2 1/2 yrs. now on prednsone, & rowasa after lialda didn't calm symtoms. I have an appt. my my G I this week. I am thinking a/b surgery. Any thoughts?  I am also taking multivitamin, fish oil, probiotic, b-12 , b 6 , multienzymes.  (just started taking supplements this past month)

Posted 2/12/2008 11:43 AM (GMT 0)
you should check out the ostomies board, theres a lot of good info there...good luck on your decision :)
Posted 2/12/2008 12:14 PM (GMT 0)

allg,

You could discuss taking an immunosuppressant such as azathioprene/6 MP.  Also, when things aren't getting under control, an aggressive treatment of cyclosporine can be administered (IV drip in the hospital) and then later maintained with azathioprene.

Remicade is a possible option too, and some people have had success with it, especially as a last attempt prior to surgery.  Read through some of the other posts to see what others are taking (as mentioned in their signatures) to research possible options to discuss further with your specialist.  All the best.

Posted 2/12/2008 2:01 PM (GMT 0)
You should visit www.j-pouch.org
The Ostomy board on Healing Well consists mostly of people who have had the surgery for CI, not UC. Two very different surgeries.

Sue
Posted 2/12/2008 3:06 PM (GMT 0)

allg said...

I am also taking multivitamin, fish oil, probiotic, b-12 , b 6 , multienzymes.  (just started taking supplements this past month)

If you just started taking these things - particularly the probiotics - in the past month, you haven't given them enough time to work for you. Check out Jini Patel Thompson's book Listen to Your Gut to learn more about alternative methods of healing that can help you avoid or reduce your need for meds and surgery.
Posted 2/12/2008 4:35 PM (GMT 0)
I think I am jsut feeling a little worn down. Mentally. I am not happy a/b being on the prednisone. I feel like I have poison in my body. It absolutely did not help. The rowasa is helping. I also was taking aloevera.I felt good with that. Thank you good info from all.
Posted 2/12/2008 4:36 PM (GMT 0)
Does anyone excercise & to what degree?
Posted 2/12/2008 7:18 PM (GMT 0)
Although very difficult to get over, surgery worked for my wife and she hasn't haven't looked back. The only downside was an onslaught of Arthritis, soon after. As the bowel had been removed, the joints were now being attacked instead..

However, don't worry, this was soon taken care of by way of medication and easier to deal with than UC.

The pouches for Ileostomy can be very small these days and so quite unnoticeable.

Its a tough descision, but I know my wife made the right choice. Oh yeah, after surgery we had a beautiful little girl by natural birth and another due soon to be born by C-section!!

All the very best of luck to you.

Jamie

Post Edited By Moderator (Admin) : 2/19/2008 10:34:37 AM (GMT-7)

Posted 2/12/2008 7:36 PM (GMT 0)

allg said...
Does anyone excercise & to what degree?

There are alot of folks here who are physically active. How much depends on your current health and energy level. Walking, gentle yoga and light weight lifting are good choices, even when you're in a flare. Weight training will help prevent bone loss while on pred.
Posted 2/13/2008 2:36 AM (GMT 0)
i had UC for 8 years before i had my sugery in April 2007, and it was the best thing i ever did! i tried diff stuff, none of it worked, and i got tired of wondering when something would quit working.
It's a major step, but it's something that is a definete cure, and that's the one thing that nothing else can give you. But there are other meds you haven't tried, like remicade, thatmay help you alot.
Read alot about the surgeries, talk to other people who have had them. There are alot of us on the Ostomies board here, and jpouch that suebear mentioned is a good place, and there are other websites, shaz has a good one.
good luck
Posted 2/18/2008 5:42 PM (GMT 0)
I have decided not to have surgery. I am going to give myself the time to heal. Mentally & physically. The rowasa is def helping. I feel very tired the past 2 days. I am wondering is it because I am weaning off the prednisone? HAs anyone else experienced thsi? Or I just have a virus.
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