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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!

Replies sorted oldest to newest

I don't have any advice for you, but I just wanted to say sorry you are going through this. My doctor thought I had Wegener's a while back before my j pouch surgery. I was really sick and my bloodwork was totally whacked. But it turned out it was the UC messing me up. I did a lot of reading about the Wegener's. I hope it stays in check for you with the medication. All the best to you.
mgmt10
Hi!

I had an older friend who was had Wegener's disease. While he kept the details of his disease to himself and his family, all I can say is he was a great, great person.

What is it about the people with j-pouchers and wegeners that makes them so great?

While I can't help you with info, hope your great days far out=number your not so great days!
aka KNKLHEAD
Thanks. I appreciate your comments.

My doctor wonders if the colitis symptoms were really Wegener's. I hate to think this though - don't want to know that I went thru the j-pouch surgery when it was unnecessary. I guess I'll never know the answer to that one.

My main complaint, with all these diseases, is butt burn. I wish I could find out which foods caused it, or how to deal with it when it happens. Butt burn causes me to cry myself to sleep and think that I can't continue to live like this Frowner
G
Yes I had both Wegener's and UC for 15 years. Wegener's was mostly in my lungs. After local doctors not getting WG under control I went to Cleveland Clinic. They put me on prednisone, cytoxin and methotrexate. After I got in remission I just take methotrexate weekly and it has controlled it well for 10 years. However, last year my UC went extremely bad, they could not get it under control and I wound up with a Jpouch 11/12. Through it all the Wegener's stayed in remission thank God.

Struggling with frequency and nightly incontinance with Jpouch, but as far as I can tell it has nothing to do with my Wegener's.

Both are autoimmune disease, but not directly related as far as I know.
PK
Thanks, Paul. I'm so happy to 'meet' someone else with Wegener's. I have it in my lungs and kidneys but I'm in remission. I self-inject methotrexate weekly and absolutely hate doing it. I'm monitored monthly for Wegener's with blood work and urine samples, and breathing challenges/chest xrays every 3 months. My husband jokes that I'll never die from anything as my doctors watch me too closely.

My rheumatologist has 3 patients in her practice with both UC and Wegener's and she feels there is a connection.

I do keep a positive attitude most of the time. Just have those days when I'm tired of doing physio for my hip replacements, tired of running to the bathroom, tired of the butt burn, tired of the drugs. I wallow around the house for a bit, then I snap out of it and away I go!
G

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