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allg
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/12/2008 4:15 AM (GMT -6)   
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)

TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 2/12/2008 5:43 AM (GMT -6)   
you should check out the ostomies board, theres a lot of good info there...good luck on your decision :)
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 50m, Azathioprine 100m (started 1/9/08) levsin,flagyl, cipro


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 2/12/2008 6:14 AM (GMT -6)   

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.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone 60mg - taper.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/12/2008 8:01 AM (GMT -6)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/12/2008 9:06 AM (GMT -6)   
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.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


allg
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/12/2008 10:35 AM (GMT -6)   
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.

allg
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/12/2008 10:36 AM (GMT -6)   
Does anyone excercise & to what degree?

ourcolitis
New Member


Date Joined Feb 2008
Total Posts : 6
   Posted 2/12/2008 1:18 PM (GMT -6)   
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)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/12/2008 1:36 PM (GMT -6)   
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.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/12/2008 8:36 PM (GMT -6)   
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

allg
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/18/2008 11:42 AM (GMT -6)   
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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