Thanks Red Plum!!
I had gone to the Dr's. several times and the range of answers was it's your shoes (I wanted to throw them at the Dr. who said that) to possibly my uterus and they did check me for other things as well. However, I would bring it up every Dr. visit, primary, GI, OBGYN and no one made the connection that I had to make myself. My ankles and feet would and currently still swell up from the size of small oranges to grapefruits but would go down if I put my legs up and especially if I did cardio excercising that day then put my legs up. Maybe if I were more swollen the Dr's. would have been more interested in looking into why.
I am off all 5ASA drugs as of 9/6/07 and started a huge flare around 9/14 and was put on hydrocortisone enemas on 9/26 (don't know if those are helping yet) also, I started prednisone on 9/7 but it doesn't seem to be helping w/my colitis yet and my GI was surprised by that. I hope that I am not steriod resisitant either.
How long did it take for the swelling to go down when you started treatment? I know it will probably take me longer as I believe I have had this disease undiagnosed for 7 years.
Sorry that you had to go through all of that and that you got pancreatis too, is your pancreas ok now? Did the drugs damage it permanently?
For the sulfa drugs is that different than the Asacol? I wonder if it was originally the sulfasalazine that I was on that did that and maybe the Asacol would be ok for me? I would need to do futher research and I am going to find a new GI who has a lot more experience than the one I have now. You did not get MCD from being on the Asacol?
GI also suggested 6MP and even remicade for me, which seems to me drastic going from Asacol to remicade....(wont make that jump w/this GI) and yes with what has already happened to you, I completely understand the fear of taking a new drug. I haven't even taken a tylenol or an aspirin for headaches or cramps since two weeks before the MCD diagnosis.
I am so glad that I found someone else who has gone through this (not that you had to go through this!!!). Thank you very much for answering my questions!!
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ; prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.