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Blood, Mucous, and Gas... it's BACK!
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Date Joined Jan 2006
Total Posts : 449
Posted 12/11/2008 1:11 AM (GMT -6)
Ugh! So, it's back. I'm on 15mg of Pred. LUCKILY, the D has stayed away for the most part. But, I am having more frequent pain. I'm taking around 4 Norco a day now on average....maybe 3. I try and take it as sparingly as possible. All that aside, I have an appt set up with my colon surgeon tomorrow to discuss pain management. I also can feel my spastic colon coming back. We discovered I likely have this on top of Crohn's back in July. Lovely, eh?
The gas is what is getting me. I can never tell if I can just let it out or if I need to go sit on the toilet because quite frankly, I never know if something will come out or not, if you know what I mean....
Sorry to be graphic there, but oh, the frustration! And, in less then 2 weeks, I'll be on NO meds and obviously, the clinical is not doing a thing for me at the moment. BUT, in 6 weeks, I WILL get the
open label drug and if it doesn't do anything, then obviously, my GI will consider removing me from the study and trying something else.
All fingers crossed that I can make it 6 weeks and then GET the drug for SURE and maybe it'll be my miracle! Oh, I MISS remission!!!
- Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08 - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old
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Date Joined Apr 2005
Total Posts : 14995
Posted 12/11/2008 10:10 AM (GMT -6)
I know as much as you hate it, it sounds like the Pred was doing something. Could the doctor not switch you to Entocort and see how that steroid would work for you? I can't imagine going med free for six weeks, especially in the condition you are in now. I really think you need to be on something for now. JMHO
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.
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Date Joined Aug 2007
Total Posts : 1202
Posted 12/11/2008 10:34 AM (GMT -6)
I am seriously considering this trial for the long
open label part. I would have to end my rectal budesonide, which will cause me to plummet quickly downhill. I can totally relate to what you are saying... Then if I get low dose or placebo... It's like you said about
having to make it 6 weeks. I am eligible in a couple weeks. I don't want to get worse again, but I can't stay on steroids forever.
Just wanted to give a virtual hug and say hang in there. Will they let you increase your steroids? Probably not. You are probably on a scheduled taper for the trial... It's so very frustrating to be in a trial hoping for the best and realizing you are not being helped.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05,
1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night. Doing well with this so far.
--single mom to 11-yr-old girl
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