Hi! I've been a lurker for many, many years.
I had my 2 step surgery in April 1993 (almost 20 year anniversary of my j-pouch!) and was in the hospital for almost 2 years due to complications. The surgery was a success as I'm alive, but I use the bathroom +/- 20 times/day. I am amazed that I'm 'healthy' as I don't understand how I absorb any vitamins. I will run to the bathroom right after supper and out comes the broccoli that I just ate. I doing okay - still suffer from butt burn and can't, for the life of me, figure out what food bothers me.
I was diagnosed with Wegener's Granulomatosis (Granulomatosis with Polyangiitis or GPA), which is an incurable form of vasculitis (inflammation of blood vessels) that affects small- and medium-sized vessels in many organs. In a nutshell, blood vessels swell and oxygen can't get to major organs and you die.
I was wondering if anyone else has been diagnosed with this rare disease? Unfortunately, the treatment is the dreaded prednisone during flare-ups, and a lifelong treatment with methotrexate. I take injections of mtx weekly.
I also suffer from arthritis - both sero-negative and osteoarthritis. In Sept 2012, I had my left hip replaced due to OA and this past December I had my right hip replaced. The worse part of the surgery was using a bedpan 20 times/day until I could walk to the bathroom!
Would love to hear from anyone who has suffered from either of these diseases and how you cope. I have a hard time some days - have pity parties every now and again.
Many thanks for all the help this website has provided. Wish it had been around in 1993, but better late than never!
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