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hey danielle.
so very sorry to hear this. There is another very active web person names heidi. She had UC and went straight to a permanant ileostomy without going the jpouch route. She just found out she has avascular necrosis also. I believe her webiste is ostomyoutdoors.com. She is also active on the ostomy section of healingwell.com. She is very kind and hopefully you can connect with her to find out more about his.
again, I am so sorry they have found this.
Bodoni,
I have been complaining for over 10 years about my feet and they have steadily gotten worse. They took X-Rays years ago and I had a failed MRI over a year ago, as well as other non-imaging tests. I could not hold still enough, because of RLS, to do a proper MRI. How did your doctor diagnosis it? I have days I can barely walk and some I have to use a cane. I don't drive the car much anymore as well.

I wonder if I could have the same problem as you do? I didn't take prednisone as long as you did, because I couldn't handle it. I endured a lot of pain waiting for remissions because of it as well. The Endocrinologist said my blood work looked like I'd just quit taking prednisone a few years ago and I told him I hadn't taken it for 10 years. He said it looked like I had just quit taking it a month before.

Currently I'm being tested by a Neurologist who says the neuropathy in them is not reversible and he hasn't figured out what is causing it yet. He's prescribing Gabapentin which helps with the tingling feelings only.

They feel numb, cold and like I'm walking on a combination of marbles and glass. Some days are better than others.

Foot doctors ultimately said the "pain" was caused by my fibromyalgia and a Rheumatoligist said it wasn't caused by fibro. So now I'm hoping for relief from the Neurologist.

I'm sorry you have this in your feet and possibly your other joints. When they said UC only affected the colon they lied to us. The cure sometimes is just as bad as the disease. Can you please describe your foot pain for me?
Avascular necrosis usually hits the hips first because that is where you have the most bone in your body. In fact, when they do a bone density scan, the areas scanned are hip, back and non-dominant forearm (in my case, left arm).

I was found to have osteopenia in my left forearm and this was attributed to prednisone use over the course of 20 years, on and off, to treat UC from 1972 to 1992.
Last edited by CTBarrister
Danielle,

I am taking calcium and vitamin D supplements. Osteopenia is not the same thing as avascular necrosis. However, when my bone density scan came back my doctor immediately ordered calcium/vitamin D supplements. At that time a blood test determined my vitamin D to be slightly low (30). Calcium and vitamin D strengthens bones that need to be strengthened.

I just got through reading Derek Sanderson's book. He was an NHL player in the 1970s who took prednisone for UC and he too ended up with AN. The AN, along with alcoholism, ended his hockey career at age 31. Ultimately he had hip surgeries in the 1980s from some well known hip surgeon in Toronto whom he discusses in his book. I guess his surgery was successful because he says he plays golf and lives an active life. He has also been sober since 1980. I don't know what treatment options you are specifically referring to.

I wish you luck Danielle. All of us who took prednisone for not a short time suffered from it. Back when I took prednisone, the same time as Sanderson, not much was known about it and he mentions this in his book.
I have avascular necrosis in my knee due to the wonder drug prednisone. I have constant pain and swelling. I have had cortisone shots and now I am having synvic (sp) shots. I got some relief from the cortisone, but the synvic does not seem to be helping. I eventually need a total knee replacement, but the doctors are trying to put it off for 5-10 years since I am only 43. I am ready to get it done so my quality of life can improve. I guess I will have to wait and see.
I fell out of bed one day and couldn't walk. I went to my internist who did xrays, then to the ortho and the diagnosis was made. Honestly, the hip replacement was a "walk in the park". I had surgery on Monday morning and walked to pt on Tuesday morning, and went home on Wed am and walked up the stairs to my bathroom. I know that no surgery is easy, but compared to the other surgeries I've had, it was no problem.
Good luck!

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