Has anyone had surgery on high levels of Prednisone and/or in a flare?

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Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 10/12/2010 4:49 PM (GMT -6)   
I was in the hospital for 14 days and was not responding well to steroids. Under the suggestion of my doctors, I decided to do a series of 3 Remicade infusions to hopefully put me in remission and allow me to taper off of steroids for surgery. Though the Remicade worked, I had a excruciatingly painful reaction in my knees, elbows and hips a week later. Basically unbearable stabbing pains that are not relieved with pain meds. I am an artist and rely on my hands to carve intricate woodblock prints and did not want to take a chance at developing some long term pain that would never go away (which unfortunately it hasn't yet, but I am hopeful it will once the Remicade gets out of my system). So, I refused getting another infusion, especially considering I wanted to go the surgical route anyway and had no intention of being on Remicade long term. So now I am on 60 mg of Prednisone and the doctors want to start weaning me off of this. I am praying that my bloody diarrhea symptoms don't come back once I start tapering (and without the Remicade), and that I can start healing up for surgery. But what if my symptoms do come back? Can they do surgery anyway? How much does it affect the outcome? Any insights from folks that got surgery when they were on high doses of steroids and in the midst of a flare would be much appreciated. I am meeting with a very good surgeon next week and I know he will answer these questions, but I am trying to do a bit of research too.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 10/12/2010 5:13 PM (GMT -6)   
I was on 60mg of prednisone and on Methotrexate for a whole year up until I had my surgery. Which surgery are you having? I had a proctocolectomy(removal of the colon and rectum). The only thing that the prednisone screwed up is when they sewed up my butt it didn't heal right. I've been packing it for a few months and now on a vaccuum pump to speed up the healing process.
The good thing is they dropped my prednisone pretty fast. Right after the surgery I was on 20 and then down to 10 for a few weeks, 7 for one week and 5,2, 5,2 every other day.

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 10/12/2010 5:38 PM (GMT -6)   
I haven't talked to the surgeon yet (appt. next week), but I am 99.99% sure I want a permanent ileostomy after doing my own research and contacting lots of people (including someone who just climbed Everest with an ostomy). The emptying of the appliance is more in line with my lifestyle (rockclimbing, snowboarding, etc.) and job (park ranger... away from a bathroom for 2+ hours leading programs and hikes for people) than a j-pouch with more frequent and unpredictable bms. Plus I just want the one surgery (though I realize there are always chances of complications and needing more).

Post Edited (Blueheron) : 10/12/2010 5:43:38 PM (GMT-6)


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 10/12/2010 9:32 PM (GMT -6)   
you can do the surgery, it just takes longer to heal. And after you get done with surgery they will taper you off the pred, and even though it will be tempting to just stop it, don't do that, i know this from experince, that was awful!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 10/13/2010 10:44 AM (GMT -6)   
I was on 60 mg of pred and recovering from a flare when my colon burst. I was kept on that dose for a few days after my surgery. They weaned me down to 40mg in just 5 days in hospital and I took it upon myself to got down 10 mg every week after I was released. My surgeons wanted me to go down faster (from 40mg to just 10!), but I would rather heal a little slower than get pred withdraw. I'm down to 10mg now and my symptoms have not come back (woot!) so I'm very optimistic that I won't need to take anything in the next few months while I heal before my next surgery. Before every time i dropped to 20mg I would flare back up.

I have heard that some surgeons will try to get you off steroids before surgery but if you're just going to flare back up and be sick again, what's the point? Tell your surgeon that you are concerned about flaring back up and see what they say. They may want you to still try it, but if symptoms return you can start back up. Either way, if you can lower your dose it will help speed up the healing process after surgery. So maybe you'll go down to 30mg and symptoms will come back. Then you start taking 40mg again, that's better than being on 60mg.
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

WeirdBeard
Regular Member


Date Joined Aug 2008
Total Posts : 123
   Posted 10/13/2010 11:52 AM (GMT -6)   
I was on 60mg and tapered to 40mg just before surgery. I have a permanent ileostomy and really like it. It's great to not be sick anymore. :)
51 - male - in North Carolina near Asheville
UC is GONE!! Permanent ilieostomy on July 8th, 2010.
Stoma is named "Sparky".

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/13/2010 9:45 PM (GMT -6)   
actually my GI wanted me off the pred, but my surgeon wanted me to stay on, he said it would be better to not be in a flare
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 10/14/2010 6:35 PM (GMT -6)   
I was on 60 mg of pred for almost a year when I had my proctocolectomy and I was in the worst flare of my life. I was seriously practically dead. SO GLAD for my surgery.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Chevypower1930
Regular Member


Date Joined Sep 2009
Total Posts : 254
   Posted 10/15/2010 8:34 PM (GMT -6)   
I'll tell you my story....

I am 6 foot and 20 years old, I usually weigh about 165 and am a lean athletic build... well I went into my surgery at 118 pounds, VERY sick, and on 60 mg prednisone before hospitalized and on IV steroids for the week before I had surgery..

I'm now 4 months out and I have not had ONE problem.... the only thing the prednisone messes up is the healing of your incision/stoma area... nothing serious for me, my incision just wheeped a little longer and made keeping bags on a pain for about 2 weeks but other than that I've had a great recovery!
20 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

Full Ileostomy surgery done on july 22!

Living with an ostomy bag right now and loving feeling healthy again! Finally have gotten this horrible disease OUT of my body!
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