I am currently in Rochester, MN being seen at the Mayo Clinic and hoping to have surgery this Friday (Aug 21). I was dx'd in Nov 2007 with severe pancolitis and have been flaring pretty much ever since. I have been on 4800mg of Asacol since diagnosis. I didn't take azathioprene (Imuran/6MP) due to a family and personal history of skin cancer/precancerous cells. I started Remicade in Feb 2009 while in the hospital for severe anemia as I was in a pretty bad flare that wouldn't go away. I have been on 5mg/kg every 4 weeks since the initial doses. It isn't doing anything for me. As of my last cscope my doc confirmed that I wasn't responding to it and due to the severity of my disease and the fact that I only respond to prednisone (steroid resistant/dependent at this point) and am still anemic he recommended surgery - soon. That was July 23rd...and here I am. I currently have D 5-30x/day with urgency and often don't make it to the bathroom.
I'm planning on having j-pouch surgery and am hoping that everything will reach once they get in there as I am willing to deal with a permanent bag, but I'd prefer not to. I'm expecting a 2 step surgery so I will have to come back later this year for takedown surgery. This was a difficult but quick decision for me as the effect that this DD has had on my life this year are such that I am looking forward to getting my life back. I am nervous and scared, but also excited. I know that it will be a major life changing event for me but in a good way. Mentally while I am prepared for this I still have a part of me that asks...what if...and then I run for the bathroom which shuts that little part up.
So far my experiences with my GI, my GP, my hematologist, and the Mayo GI have been fabulous. I never felt the need for a second opinion although I am getting one by default while here at Mayo (part of their process). I do wish that I had kept better personal records of my time on steroids, when I took what drugs (I did take Xifaxin a couple of times), symptoms that came and went, and just a basic record of my journey as it would have made answering some of the Mayo GI's questions a little easier. I have to admit that carrying in my book of medical records was a bit daunting for someone who hardly ever saw a doctor until I got UC.
I have tried making modifications to my diet and the removal of some foods has led to an improvement...but my overall quality of life is horrible compared to what it was and as I said, I'm looking forward to getting my life back.
I don't know if you have been there yet but both jpouch.org and jpouch.net are great sites for information on surgery. The information can be a little scary but you have to remember that it's like this forum...people that don't have problems generally don't hang out on the forums...they are out living their lives to the fullest. I will admit that it is nice to be able to read information provided by people like suebear and summerstorm who are both enjoying life and providing information on the forums.
I wish you luck in your pursuit of information and a solution that works for you.
Collicat - I am female so freezing sperm is not a concern for me but I have read on more than one site that people have done it and recommend doing it - just in case...
Ducridr - 35 - female
Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day,
Xifaxin 2 (200mg) 2x/day
Prednisone 15 mg (started at 40mg Nov 08 - off June 09)
calcium and vit d supplement, potassium supplement, B-12 supplement
Junel FE (BCP)
,metamucil capsule (1/day)
Coumadin (for blood clot) 5mg/day
, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.