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Think I'm Almost in Remission And Confused!

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Ulcerative Colitis
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Posted 6/11/2010 9:15 PM (GMT 0)
Okay,so after my recent stay in Hospital,I think I'm quietly sliding in to remission.Each day gets a bit better,less tenesmus,less toilet visits,things coming out a little more formed.So,that's good right?Well,yes,but I am still taking 60mg's of Pred,so I'm concerned what will happen during taper,as I've been here before.
Anyway,my main question is,if you were seriously thinking about surgery,and then went in to remission,would you press on with surgery,or see how things went?
Everytime I flare,which is at least once a year,I cogitate over the surgery thing.Now with this latest flare I thought it was going to be a no brainer,but it looks like there's a possibility of remission.I guess it's going to take several weeks to know where I am,as I don't start tapering for another week and a half,and then only by 5mg's every five days.
Thanks for reading if you got this far,I didn't post here for some time,and as is typical,started again when my own issues were acting up.
Posted 6/11/2010 9:42 PM (GMT 0)
It sounds to me like you aren't sure about surgery. So, I'd say see how your taper goes and see if you can get into remission. When it's time for surgery I think you'll know.
Posted 6/11/2010 10:29 PM (GMT 0)
I would go ahead and do my research now, get familiar with the idea. Then if you begin to flare, before it gets bad, see about getting surgery. Or you could go on to try Remicade and Humira. But yes, I would learn about surgery now. Occassionally even I look things up on it, just so I know =)
Posted 6/12/2010 2:26 AM (GMT 0)
Now would be an excellent time for you to at minimum consult with a surgeon and learn what you can about surgery and recovery. That way if it comes to it you will have established a relationship and can move forward when and if you need to.

Sue
Posted 6/12/2010 7:38 AM (GMT 0)
Thanks for all the answers,which make a lot of good sense.I have done a great deal of my own research on surgery,and they are meant to be getting me a consult with a surgeon soon.Day at a time until the steroids start to taper I guess.
Posted 6/12/2010 6:08 PM (GMT 0)
     So ironic that you posted this!!!!  You and I are in the same boat.  I have been flaring, more on than off, for the past two years.  In May of 08 I was hospitalized for ten days...terrible flare and couldn't get off prednisone for seven months.    Finally reached remission and off the prednisone (still took the Colazal and 6MP) on Nov 1, 08.  Remission lasted until May of 09.  Bad flare again and the doctor increased the 6MP to 100 mgm from 50 mgm and back on the prednisone.  My white count plummeted to 1.6, I felt horrible, flu like symptoms, lethargic...just ugh!  Also my bilirubin was double the normal limits.  Taken off the 6MP for a few months and started back on 50 mgm with close blood monitoring.  Could not get off the prednisone.  Started Remicade Nov 09...after 3rd infusion developed antibodies to it.  Started Humira in March....still no change by May.  Consulted with a colorectal surgeon and am scheduled for perm ileo June 28th as he said I am not a candidate for j-pouch because of my age...63.  Too stressful of an operation..so said the surgeon.  I have been on prednisone steadily now since the middle of Jan.  Every time I taper down to about 7.5 mgm..I start to flare..bleeding, urgency, pain.  Had to increase prednisone to 40 mgm two weeks ago...now down to 30 mgm.  However, since Sunday, I noticed a marked improvement...dare I say remission?  Yes...I still wonder if I am doing the RIGHT thing because this surgery is sooo final and will really take some getting used to, but I know in my heart I cannot live on prednisone.
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