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Now freaked out about my steroid usage pre-surgery

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Posted 8/19/2012 1:15 AM (GMT 0)
I was looking at my records today and just realized that I've been on Prednisone since May. I've been mostly on it since Nov with two tapers, but for some reason seeing that I've been taking it continuously since May just freaked me out. I was at 25mg then and around the first of June I had to jump up to 40mgs. I've been there every since. :(
Posted 8/19/2012 1:48 AM (GMT 0)
I'm sure that is why you will have surgery in 3 steps and not 2 steps according to your signature line. From what I recall the prednisone kind of makes things a bit mooshier in there to work with so to try to also form the pouch simultaneously when the colon is removed is too difficult so a 2 step process can't be done.

My sister had emergency surgery and was on a high dose of prednisone. Her surgery was 2 weeks before my husband and the main difference comparing the two of them she healed slower. My husband was off the prednisone for 3 years prior to surgery. He was one that became so steroid dependant it was a horror show just getting him finally off of it with a very long slow taper. No way he was going back on it.

It is not uncommon for people to be on prednisone up to the surgery date. In alot of cases unavoidable.

I am sure others who are better versed at this than I am will give you some more info.
Posted 8/19/2012 2:08 AM (GMT 0)
Thanks. I probably need to just calm down and go clean some more :P
Posted 8/19/2012 4:34 AM (GMT 0)
I was just fixing to say, calm down, it will be ok!
A lot of us were on pred, it's better to be on some pred and not be as sick as to be on no pred and be horribly sick. I was on 20mg i think, and had been on it for about 4 months before surgery, i tapered to the 20 about a week before. The GI said, oh no you can't be on that at all! but the surgeon said, to take it and be less sick.
Anyway, it will just make it a bit slower on the healing. Be sure that you don't just quit cold turkey though, i was so tired of taking it after surgery that i just quit. Big mistake!
Posted 8/20/2012 4:52 PM (GMT 0)
I was on massive steroids prior to my intial colectomy surgery (step one of three). I was even on IV steroids in the hospital for one week as a "last ditch effort".. before the "emergency" surgery. I had no healing problems after surgery. In fact the best I ever felt since pre-UC days was after my first surgery. It was all the surgeries after that.. that did me in!

so relax.. and just think about how great you will feel when you get that diseased colon out of your body!

Posted 8/20/2012 10:38 PM (GMT 0)
Don't worry. I was on 60mg for like 6 months before my surgery. I had a pretty good recovery.
Posted 8/21/2012 12:27 AM (GMT 0)

ActiveUCer said...
Thanks. I probably need to just calm down and go clean some more :P


OMG, I cleaned like a crazy woman on prednisone!! devil
Hang in there, you'll be disease-free and pred-free soon! yeah
Posted 8/21/2012 1:46 AM (GMT 0)
I think most everyone going into surgery is/was on prednisone and a lot of it. You will be fine...try not to worry. :)
Posted 8/21/2012 1:13 PM (GMT 0)
I was on prednisone for 2.5 years prior to surgery and I'm fine. Like Marianne said, most people going into surgery are on prednisone.

Sue
Posted 8/21/2012 3:14 PM (GMT 0)
omg.. thats so funny. After the docs determined that the IV steroid last ditch effort completely failed, they scheduled surgery... for 3 days after we all agreed it was the only option. So I begged them to let me go home for those 3 days pre-surgery as there was nothing for me to do but hang out and wait for surgery in the hospital. So they let me go home and I cleaned for 3 days straight (in between bathroom trips).. as I was still on massive steroids. Wanted my house to be immaculatae for my post-surgery homecoming and of course couldn't sleep at all with that volume of steroids.
Posted 8/21/2012 8:52 PM (GMT 0)
Hahaha, yeah. I am super glad I have a few days off before surgery so I can get my house in shape! Unfortunately I've been on Pred so long that I no longer get the hyper cleaning feeling.
Posted 8/22/2012 2:31 PM (GMT 0)
Your length of usage and dosage are almost identical to what mine were going into surgery and it didn't cause me any problems. This is why they do the three steps. You are in good hands! :-)
Posted 8/22/2012 7:42 PM (GMT 0)
     I was prednisone dependent for two years prior to surgery and on it more times than I can count during the twelve years I suffered with UP.  I was not a candidate for j-pouch for 1)the least being my age at time of surgery 63  2) had uncontrollable high blood pressure due to steroid use.  I was on three different blood pressure meds and still had readings of 216/110 from time to time and 3) had type 2 prednisone induced diabetes rolleyes !  My surgeon insisted I pass a stress echocardiogram before he would touch me. 

     I have a permanent ileo.  I had a few blips during my hospitalization. No damage.  It was a fairly long recovery for me but OH soooooo worth it!  Living life to the fullest now at age 66 yeah

Posted 8/22/2012 8:14 PM (GMT 0)
I'm sorry you were not a jpouch candidate if that was your wish, but congratulations on getting that horrible thing out! I had struggled with the fact that I might be "jumping the gun" since I have not tried Humira for my UC (and then there's some alternative and experimental things out there). After reading about the success rate of Humira and the the fact that I would likely be on it forever...well, I decided I didn't even want to try. I knew that whatever I tried would mean lots of continued Pred use and those side effects. I truly believe that surgery is inevitable for me - My UC has been getting progressive worse during the year it's been diagnosed even with all the drugs and steroids. So I'm very much past that decision making point now.

I used the lessons others, such of yourself, have shared to make the decision to get the surgery done a bit sooner than others might. My BP is a bit high (typically 130/90 with a small dose of BP meds) and I think the diabetes is coming. I had an EKG that came back ok and am relatively young (30). So all of my pre-surgery tests have come back a'ok. Now I'm just anxious to get the colon out!
Posted 8/22/2012 10:13 PM (GMT 0)
Active UC er at some point you might want to get a bone density scan if you haven't already to see what kind of damage pred has done to your bones. If it comes out weird, get an endocrinologist to read it, not a primary doc or gi, as they often don't know how to read them in pre menopausal women (mine came out one reading normal, one osteopenia, one osteoporosis.... but it turns out that the osteoporosis one is really unreliable when people are very thin, as I was because I was so sick....so she had me wait a year, and so far so good, with probably a lot more pred than you've had)
Posted 8/22/2012 10:43 PM (GMT 0)
     I had no problem with the idea of having a "bag".  I was just sooo sick of being sick.  It is no big deal and I didn't have a problem getting used to it.  No regrets at all.  Only regret is not having opted for surgery ten years before actually going through it.  Before the prednisone ruined my health!  I have full blown osteoporosis and three back fractures rolleyes .  On the UP side, my BP is well controlled with only 1 pill a day and I no longer have diabetes yeah !  Prednisone certainly is the best worse drug.
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