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Is there a point waiting for surgery? Ulcerative Colitis - In Hosptial

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Posted 1/13/2016 11:56 AM (GMT 0)
Hello all


I have come to terms with getting the Jpouch surgery and I have a couple options.

I have been on Oral prednisone since February 2015, varying doses between 40mg and 0mg. I had the most relief when I was doing my Loading doses of entyvio, and also around 30mg of prednisone. I tapered the prednisone to zero a the beginning of November and by December 20th I was in a full blown flare again.

I came to the hospital to be put on IV steroids for the first time to help me get stabilized. After agreeing to the surgery here they said it would be somewhat beneficial to see if I can gain some weight, and lower my prednisone usage before the surgery.

Then the doctors come to tell me since I have been on prednisone for a year, that doing a taper to as low as I can (we figured maybe 20mg) then it would be best to do the surgery then (semi-planned). Now they are saying since ive been on it for a lengthy period of time - that tapering at this point wont really give me the benefit since ive already been on it so long.

So my question is did you all try to get to the lowest dosage of prednisone before surgery? I know it is ideal.. But the doctors think that in my case, that theyd rather do it now in terms of my colitis symptoms rather than in a month and risky flaring very badly again.

Thank you for all your imput.

PRED USAGE:

Feb 2015: 40mg
March 2015: 35-30mg
April 2015: 30mg-20mg
May: 20mg
June: 40mg-30mg
July: 25mg-15mg
Augest: 15-10mg
September:10mg-5mg
October: 5mg-0mg
November: 5-0mg
December 21st: Back at 40mg
January 7th: IV Solumedrol 60mg

THANK YOU
Posted 1/13/2016 12:45 PM (GMT 0)
I think you can severely drop to 20 kind of quickly and than maybe finish up the taper after surgery. I would suggest tpn as it will give you the nutrients you need without involving your GI tract too much.

After surgery you should do a taper maybe 1-2 weeks on 20 and than alternate 20 and 15
Than do just 15 than alternate 15 and 10 than do just 10 and than alternate 10 and 5 than do plain 5 and eventually alternate 5 and 0. I find this to be more effective than doing .5 mg drops because out body is supposed to make about the equivalent of 5mg of pred. We need to trick out adrenal gland back into producing cortisol. The other problem is that ou body has gotten used to it so it thinks it needs it. Doing every other day will give it the steroids but also start to deprive it.
You might need Ativan at the end for withdrawal symptoms.

It is very common to get joint pain when tapering and for a few weeks after.
Posted 1/13/2016 1:04 PM (GMT 0)
Luckily I wasn't on prednisone at the time of my surgery. (I had moved on to Remicade and failed that). Yes it would be ideal not to be on steriods but I would listen to your doctor's recommendations. Lots of people go into surgery while they're on prednisone and do just fine. Best of luck!
Posted 1/13/2016 1:08 PM (GMT 0)
I was on prednisone for about eight months at the time of my surgery and my surgeon did NOT want me to taper beforehand. He said he'd rather operate on me feeling as good as possible than have me try to taper and end up much sicker for the surgery. Basically what they're telling you now.

As an aside, my surgeon was able to do a rapid IV taper on me post-op so I left the hospital on 10 mg/day (day of operation I was on 35 mg/day). Because I had been on it for so long I took about six weeks to taper down to 0 after that but it went smoothly.
Posted 1/13/2016 1:27 PM (GMT 0)

Pluot said...
I was on prednisone for about eight months at the time of my surgery and my surgeon did NOT want me to taper beforehand. He said he'd rather operate on me feeling as good as possible than have me try to taper and end up much sicker for the surgery. Basically what they're telling you now.

My surgeon didn't want me to taper either, but her reasoning was that it was because I'd only be put back on a high dose of steroids again for the surgery anyway, so there was no point.

I also had a rapid taper post-op. Dunno what I'm doing replying to this question all over again, as I answered it on the Ostomy board.

Dikid said...
It is very common to get joint pain when tapering and for a few weeks after.

I didn't have any joint pain, but I did have crashing fatigue which probably lasted 2-3 months in total. I didn't do the alternating taper - maybe that might have worked better. Instead I tapered the final 10mg at the rate of 1mg/week.

Post Edited (NiceCupOfTea) : 1/13/2016 6:30:23 AM (GMT-7)

Posted 1/13/2016 2:13 PM (GMT 0)
The advice you are getting is consistent with the advice given my husband, who has been on steroids for over a year. He cannot get below 27.5 mg without flaring and so we are consulting with surgeons at this time. They have said because of the prolonged use, there is no benefit to tapering before surgery -- taper will come afterwards.
Posted 1/13/2016 2:45 PM (GMT 0)
I was on 10mg of prednisone at the time of surgery. It's best to be in good health, rather then be in a flare, so if they are recommending surgery at 20mg, they feel it's in your best interest to proceed. Your surgeon will start tapering you off after surgery.

Sue
Posted 1/13/2016 3:03 PM (GMT 0)

Suzy:

Since you husband is on pred, consider this.

Case study N=1 but it worked, curcumin and pred, then she tapered quickly off the pred.

Just one 500mg pill a day.

Old Mike

Page down for the paper.

http://journals.lww.com/ibdjournal/Citation/2011/07000/Curcumin_for_clinical_and_endoscopic_remission_in.28.aspx


Posted 1/13/2016 3:16 PM (GMT 0)
I went into surgery on 20mg of Prednisone. My surgeon tried to have me taper before but we couldn't get down below 20. They gave me loading doses of steroids for surgery. I'm still currently on Prednisone down to 5mg every other day
Posted 1/13/2016 3:20 PM (GMT 0)
I assume your j-pouch surgery will be a three-step process. It's common for people who are going through with the three-step to be on prednisone at the time of the first surgery. You will be able to taper and get completely off pred between steps 1 and 2.
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