Off pred, last 0.5 mg dose was yesterday- yee ha!

Though pred was the only UC drug that really ever worked for me (like a charm- and never seemed to lose therapeutic potency with me either) and though its side effects in all but high doses never really bothered me, I am finally off it now, 5 weeks after my colon was chucked (end ileo for now and most likely forever by choice methinks), and I had zero withdrawal issues. I went into surgery on a low dose but was low dose dependent when I had a colon so they tapered me slowly just in case.

Oh, even more priceless than being off pred is not having any abdominal pain whatsoever any more- zip, nada, none.... I guess I am starting to admit the truth that I am a true member of the "wish I had done surgery eons ago" club- though I dont blame myself fir trying everything and then some over the years- surgery was a last resort but it turned out the fear was grossly over-rated (had a few nasty days of ilius during re-admission but it's ancient history already). Didnt stick around to try vedozimulab (sp..) though, and so glad I didnt stick around to wait for another bandaid!

Post Edited (Probiotic) : 6/10/2013 8:44:09 AM (GMT-6)

I remember that great feeling of the last couple of mg's of pred.
If, and I mean only IF you happen to get some symptoms of withdrawal now, don't worry, it will pass. (I had a couple weeks of unusual fatigue and got a wicked cold).

Well, NCoT, I sincerely hope that the day comes that you'll not regret surgery- and I say that in the sense of hoping it's because your quality of life improves. Some of us, myself included, may have always falsely assumed (from your earlier posts) that your dissatisfaction was purely or almost all psychological, but I see that we may have been very mistaken and that you have real physical issues too. Just hang in there and keep tackling them one at a time- if you aren't getting the help you need, keep looking. I know your NIH has issues (just as the US one has much more serious issues for the small minority who are uninsured, and in any case breaking the bank of this country even as it fails to deliver efficiently) ... Was just reading that immigrant Poles have imported pretty decent and affordable private clinics to the UK now, with long hours including weekends and evenings. Unfortunately I gather so far those clinics are mostly for GP type stuff though, but ya never know.

Pred withdrawal mjght well be at play with your energy issue. I still feel sleepier than I'd like in the mornings, even after a good night's sleep (which I now seem to get, pain free, unlike my lousy pain-wracked UC nights). Can you get your cortisol checked? It might be that you need a very low dose of pred and then get tapered off slowly.

PS you are not all alone in feeling like a freak, even though for different reasons- I sometimes feel like a bit of a freak on this forum for not wanting a jpouch- it seems almost everyone here either couldnt get a jpouch or has an ostomy for a few months on their way to a takedown. I still have a rectum (and have no plans to have it removed- just plan on surveillance indefinitely for now, as that surgery doesnt thrill me at all and Heck, I was planning on risking a life of just surveillance before I got the colectomy anyway) and surveillance of a rectum is a piece of cake vs a whole colon... so I'll never say never, but I suspect if I ever change my mind I might shoot for a k pouch or BCIR sooner than deal with pooping urgency again... But it's all a matter of picking our poisons. I guess I'm not not all alone- summerstorm and blueheron were like minded- if anything I am a fence sitter since I kept my rectum. Hey You and I have the do-nothing rectum in common- cheers.

Post Edited (Probiotic) : 6/10/2013 2:15:19 PM (GMT-6)

Congrats on getting off of the Pred, it is a great feeling!! I was on it for over 4 months, at pretty high doses, and it NEVER did a thing for my UC, so I was more than ready to be done with it. I do have to say I've had some issues since I've stopped taking it....mostly hair loss, skin break outs and some trouble with my knees. Can't say for sure it's all because of being off of the pred, but it all DID start or get worse once I finished my taper...oh well.

And if you are a freak, than I am a freak too!! I also chose to go with a permanent ileostomy, even though I could've done a J Pouch. There were many reasons I made the decision that I did, and I have not regretted it for one second. I am a youngish (34) female who is pretty active, and having the stoma has not hindered me in any way, so far. Good luck with your continued recovery!

Congrats Pro !!!!

Thanks everybody,

@UCWhat?- true dat, sorry I forgot to acknowledge your fellow freak status. :) And @musicmaker- best wishes- you will do fine. Easier said than done, but don't fret re complication fears because 99% of so-called complications are just minor technicalities really, assuming that they even occur at all.

By the way, just 3 immodiums a day have reduced my frequency to the idealized 5-6 mushy stools... er, I mean emptyings, a day. To be honest, I feel I could play tennis and bike now. i am holding off because of plastic surgery on the incission in a few days... Just reckon I shouldn't risk pulling a muscle or anything before then.

Post Edited (Probiotic) : 6/11/2013 8:14:39 AM (GMT-6)

Lol yeah suebear, thanks! I must have been PMing you for close to 5 years now and somehow always managing to chicken out if surgery due to some mini-remission "saving" the day, or getting my hopes up for some next new thing to try. I sure appreciated how you were never ever pushy about surgery (well, no one here is, and you yourself were once adamantly against it before you crossed the Rubicon), but just as glad that you always put me at ease as well.