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stlwrkr
New Member


Date Joined Jan 2008
Total Posts : 12
   Posted 2/28/2008 11:52 PM (GMT -6)   
I have been in a bad flare for the last month and a half. I have been taking 40mg of prednisone along with my asacol and rowasa enemas. My bleeding has not even slowed with the high dose of pred. I had a colonoscopy yesterday and my doctor told me that I should consider the surgery since steroids are not helping. I have had UC for four years now. Usually when I flare I start myself back on 40mg of pred and start tapering after a week. That usually would knock it down and get back under control. The last few weeks the pred has zero effect on the bleeding. I am just amazed at how quickly I have become immune to the steroids. I am scheduled to see a surgeon on the 6th of March. I will also be going to see a differant surgeon for a second opinion. I have always thought of myself as one that would never need surgery. Can anyone give me some advice as to what I can be expecting regarding a total colectomy. How long is the bag worn with a "j-hook". Thank you all in advance!
UC since 01
Asacol
Prednisone
Mesalamine enema
Tried Remicade
Tried 6mp
 


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/29/2008 12:08 AM (GMT -6)   
it says on your profile that you have tried remicade and 6-mp. what effect did it have on your bleeding or symptoms? unfortunately, the disease gets refractory to the steroids after a while and they do not work or worse yet you get steroid dependent... the same happened to me as the steroids stopped working.

same story 40 mg of pred for 3 weeks straight and not a dent in my symptoms. my doc wanted to put me on 6-mp next. What do you think is causing your inflammation? Stress? Diet? Change in medications?
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!
Meds 3200 mg Asacol, 2.5 mg Prednisone


stlwrkr
New Member


Date Joined Jan 2008
Total Posts : 12
   Posted 2/29/2008 12:58 AM (GMT -6)   
I had no response to the remicaide. I did the infusions for 3 months and had no change. I had bad reactions to 6-mp including blisters in my mouth. I dont think stress or diet is contributing to this flare. I am actually the happiest now than I have been in a long time involving everything besides the colitis. I guess I just can not get over the fact that 40mg of prednisone is doing nothing after such success all this time. I may go to the hospital tomarrow for some IV steroids. I work a rotating swing shift and tonight is my first night back on midnights. I wont be able to take my pred until tonight after I wake up. That equates to about 15 hours from now. Taking pred and trying to sleep during the day is horrible. At this point, I will welcome surgery if it will stop all of this craziness. Unfortunately I have a very physically demanding job and will need to be 100% before I return to work.

UC since 01
Asacol
Prednisone
Mesalamine enema
Tried Remicade
Tried 6mp
 


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 2/29/2008 1:37 AM (GMT -6)   
i hope the best for you and hope your GI can do something for you.
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!  (In remission since 2/15/08)
Meds 3200 mg Asacol, 2.5 mg Prednisone.  Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications!  For me, diet works...


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/29/2008 8:08 AM (GMT -6)   
www.j-pouch.org is a great resource, you may want to inquire there :)

I would also suggest setting up a consultation with a colo-rectal surgeon to get some more answers about the procedure.

Best of luck!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/29/2008 8:17 AM (GMT -6)   

Have you tried azathioprine?  Some people that cannot tolerate the 6mp can tolerate this form of it better.  Also - you are probably  candidate for Humira.  Since all other "regular" UC meds did not work for you, you should be able to get approval for off-label use of Humira.  I would discuss with your GI.

Don't feel so bad about the 40mg not working.  It's frustrating, yes, but 40mg has never put a dent in my symptoms. 

Good luck with the IV steroids - and let us know what the surgeon says.


KTM


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/29/2008 8:29 AM (GMT -6)   
I think there is nothing more shocking then hearing the word "surgery" uttered by a doctor. My GI started broaching the subject to me about one year into a 2.5 year flare. Certainly if drugs are no longer helping it's probably time to have a surgical consutation. As pointed out, you can meet thousands of us who have walked in your shoes at www.j-pouch.org and many had surgery for the very reason it's being recommended for you. If you opt for surgery I would encourage you to go with a surgeon who has done many of the procedures. On the j-pouch.org board you can look through a list of surgeons that come highly recommended by those of us who have gone through it. Surgery and recovery are not easy but I can tell you having been on both sides that I prefer surgery over life with chronic UC. I am free of meds and most importantly I live a very active life that doesn't center around the bathroom!

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


stlwrkr
New Member


Date Joined Jan 2008
Total Posts : 12
   Posted 2/29/2008 5:59 PM (GMT -6)   
Thank you all for the replys. I will check out the web site and will keep you posted! :-)
UC since 01
Asacol
Prednisone
Mesalamine enema
Tried Remicade
Tried 6mp
 

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