Posted 6/9/2013 11:51 PM (GMT 0)
Hi Everyone,
I'm a new poster, but have been reading your posts for a long time.
My situation is I am going to Mayo in a few days for my 5th colonoscopy in the 13 years I've had UC, now severe pancolitis but under control with Remicade. I will also have my 1st Upper Endoscopy, and 1st CT Scan, small bowel. The reason for all this is I want a 2nd opinion on my treatment options. My aunt passed from uncontrolled CD and I want to make sure what I have is really UC before I consider the surgical option for that. I'm considering surgery because for the last 6 months I have noticed breakthrough a few weeks prior to my next infusion, so am suspecting antibodies have formed. Dr has now increased the frequency of infusions to every 6 weeks, to get me as symptom free as possible if I elect surgery. I am starting to question whether Remicade can be used for long term treatment - are there people out there who have used it for 10-15 years? The dollar cost alone - $7500 per dosing - and the number of doses I will need to continue on in life - and with surgery curing the disease - make the crux of my surgery stance with jpouch. We all make decisions on our treatment of UC based on a multitude of factors. Just want to be as knowledgeable as possible before doing so. Thanks, and my best to all of you on your disease management.
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Dx @ 37 with UC pancolitis 10/00. Kept in check with Asacol until 2004, beat it back with prednisone/Rowasa until 2008; got severe, could not manage it until Remicade in 2011, now 15 infusions in.
Remicade, 5 mg per KG Q 8 weeks (recently changed to 6 weeks)
Delzicol 400 MG : 4 caps t/d
Flovent HFA 220mcg, 4000 IU of D3, 1000 mg C, 800 mcg Folic, 3000 mg Omega3, 1300 mg calcium, 500 mg Niacin