Can we talk about
I'm writing today to give anyone suffering with joint pain a heads up and to encourage you to be your own health advocate. I frequented this board alot when my daughter suffered from UC (had a total colectomy and jpouch) and found this to be such a wonderful, supportive site with compassionate people who so willingly share information to help others...I want to do the same.
My daughter (21) was recently diagnosed with avascular necrosis/aka osteonecrosis...meaning bone death which was caused by steroid treatment. She had a mysterious knee pain, swelling etc. We thought it was arthritis setting in because of her UC. Her rheumatologist suspected it too but did an MRI just to rule out a mechanical problem. That's when they found that it was not arthritis, but AVN/ON. It's not detected on regular xray until the bone starts to collapse. Please insist that your doctors send you for an MRI to rule this out and if caught early, there are minor surgical procedures that can help in the treatment, otherwise, you don't know you have it until the bone becomes brittle, fractures and pain sets in. That's when the doctors say that you now have osteoarthritis and can't do anything except recommend joint replacement.
They tell those who are taking Prednisone to take extra calcium and vit D to prevent osteoporosis, but they don't tell you that you risk getting AVN/ON. It's a devastating bone disease and you deserve to know that this is a risk...so that you can have informed consent...we didn't and I feel so cheated by the medical community and now my daughter is facing at least 2 joint replacement surgeries per affected joint because of her age. How many other UC patients are walking around with this and don't know it until they feel pain in their hips, knees or shoulders (most common joints affected)??
20 yo daughter w/ Pancolitis
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
21 yo Daughter diagnosed with bilateral knee AVN
and right elbow AVN