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Ulcerative Colitis
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Posted 9/11/2007 7:02 AM (GMT -8)
Hi folks! After 2 weeks of horrible bloody diarrhea, I'm back on pred- 60mgs/day. I don't even mind this time around- I was so miserable for so long, couldn't eat anything, have been living on Ensure liquid, not sleeping, running to the side of the road to go to the bathroom while out & about, just terrible! Of course in a week or so I'll be hating the pred too, but..... I don't plan to stay on it too long- I'm really pushing for surgery. I meet with a surgeon Oct. 2nd, & it's already been recommended numerous times. I have an appt. with one of the top GI docs in the country next week, & I'm thinking he's just going to reiterate what my regular GI doc thinks- surgery. The only thing I haven't tried is Humira. I'm so sick of this stupid non-working colon, I can't get it ot fast enough. I dont know how those of you who've been flaring for 2+ yeras can do it. After about 16 months I'm done.
Posted 9/11/2007 8:16 AM (GMT -8)
I think that I am close to your situation. I have been DX with UC for 3 years, and cannot say that I have had any long term remission that did not involve prednisone. I had better moments than others, but "normal" was very relative. ihave been on Asacol, switched to Lialda, on/off prednisone, and am currently  on Imuran and Remicade. The Remicade is new so I am still holding out hope. I have been on/off prednisone since February 07, with my highest dosage being 60 mg. I have finally started my taper and am on 30mg with the schedule showing me to be off by mid November. I have every side effect from the prednisone ecept psychosis. I have some nasty ones involving eye irritation and blurry vision. Now I have some ugly looking infections in my thumb (thank you immuno suppresants). It seems as if the medication is worse than the disease sometimes. However, when my flare is roaring, I beg for the prednisone. If the Remicade does not help get off the prednisonethen I, too, may have to consider surgery. It is not a decision I will take lightly, but at this point the medication (especially the prednisone) is really taking a toll on me.

Posted 9/11/2007 12:54 PM (GMT -8)
Crud! What a miserable situation! I hope you find something - surgery or not - that has you feeling better soon!

Hang in there!
Posted 9/11/2007 2:04 PM (GMT -8)
thanks Dakotagirl! I'm glad to hear you're doing good yourself. It's been a long couple months for me, I think because I've been thinking about surgery. And finally, finally becoming not only accepting of it, but sort of looking forward to it. I'd rather not, of course- but I'd rather not have ever had UC either! And I do, so....them's the breaks! I just feel like this whole past year has been wasted being sick- I could've spent the time adjusting to my new ileostomy bag, or my j-pouch.

Posted 9/11/2007 7:35 PM (GMT -8)
I know how you feel - my husband is discouraged and not happy with losing the past year 1/2 of his life basically. Surgery is something that is out there in the back of his mind but he is certainly hoping and trying to be optomistic that maybe the meds just haven't kicked in yet - maybe the dose needs to be upped - or maybe there is something else out there that may help bring about a remission.

To continue with the meds, side effects, yadda yadda............our hope is the Mayo Clinic can give him something else give him more hope and help bring about a remission. How much longer he will continue to accept this if things don't improve remains to be seen.

My real concern is - if surgery should be considered or is a real possibility down the road...then at what point (age) does it become more risky. He is 61 and basically healthy insofar as surgery but in another 5 or 10 years, staying on meds creating other problems, oh to have that "crystal ball" to help make the right decision at the right time!!!

What a tough call each and every one of you have to make to try and find what is the right thing to do personally. It's great to get all the different info here to help try to make sense of things.
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