ibtracy
05-19-2004, 10:40 AM
Hi everyone. I never know if I'm posting in the right place or not.
I posted on the newly diagnosed board but got no response so I thought I'd post here since I'm experiencing another flare after driving 90 miles yesterday to meet my new uro. He's great and it's worth the flare, trust me.
I'm so excited. He immediately diagnosed me with my prior biopsy and hydrodistention reports from my previous urologist and feels confident that he can help me get better.
He's ordered Urodynamics testing for next week along with getting my first bladder instillment of Elmiron. He has boosted the dose up of my Elmiron to 200 mg in the a.m. and 200 mg in the p.m. and is putting me back on Elavil at 10 mg each night and hopes to get me off the narcotic pain therapy that I'm currently on. He said he isn't a fan of being on narcotics long term and even though IC is a painful and chronic disease he really doesn't believe in pain pills. That's the only negative feeling I have about him. He must not know how really painful IC is. But I'll deal with that as I continue on with him. I go back next Wednesday for the Urodynamics and first Elmiron instillment. He plans to teach me to self cath so that I can eventually do the treatments at home instead of driving 90 miles to see him all the time. The Elmiron instillments can be done daily if necessary so that's a positive sign. They can be done during a flare for immediate releif or just weekly for continued therapy benefits. He was pleased with my pain and voiding journals and my extensive medical notes. I listed all the books I've read on IC and the research that I've done on this website and others. He said I'm probably 75% more informed than his average patient. He said he doesn't see any need to do the potassium chloride test to confirm both of our diagnoses. He said I have signs of early stages of IC but not to be alarmed because I've already been on the Elmiron for 3 months and with the future instillment therapies I'll be receiving he feels that remission isn't all that far away.
I'm very nervous about the Urodynamics and it causing a great deal of discomfort but he said he would not send me out the door in any pain + I'll be getting my first treatment right after the tests so I should be okay. I just hope he's right and things will start to brighten up in my future.
The long drive yesterday seems to of started up a major flare and as you all know I CANNOT MISS ANY WORK OR THEY'LL LET ME GO. So today will be probably the toughest day for me yet. I'm a little aprehensive about his not believing in "pain meds" but will have to take a little bad with all my good news that I'm reporting. His nurse travels all over and speaks about IC and the new heparin and elmiron instillments so they know what they're doing and what they're talking about which is a huge advantage over the uro I was seeing here in my hometown.
He also told me to try Prelief for a while and see if it really helps. Our local pharmacy and grocery stores are now carrying it so it will be interesting to see if it works. I just have to take baby steps and do one thing at a time right now. Some prayers and kind words of encouragement will get me through the next few weeks, I hope.
My new doctor also put me on light duty. No pushing, pulling or lifting anything over 10 lbs. and again I'm sure work will blow a nut about that too.
SORRY THIS POST IS SOOO LONG - REALLY NEEDED TO GET THAT ALL OUT TO ANYONE THAT MIGHT UNDERSTAND.
I posted on the newly diagnosed board but got no response so I thought I'd post here since I'm experiencing another flare after driving 90 miles yesterday to meet my new uro. He's great and it's worth the flare, trust me.
I'm so excited. He immediately diagnosed me with my prior biopsy and hydrodistention reports from my previous urologist and feels confident that he can help me get better.
He's ordered Urodynamics testing for next week along with getting my first bladder instillment of Elmiron. He has boosted the dose up of my Elmiron to 200 mg in the a.m. and 200 mg in the p.m. and is putting me back on Elavil at 10 mg each night and hopes to get me off the narcotic pain therapy that I'm currently on. He said he isn't a fan of being on narcotics long term and even though IC is a painful and chronic disease he really doesn't believe in pain pills. That's the only negative feeling I have about him. He must not know how really painful IC is. But I'll deal with that as I continue on with him. I go back next Wednesday for the Urodynamics and first Elmiron instillment. He plans to teach me to self cath so that I can eventually do the treatments at home instead of driving 90 miles to see him all the time. The Elmiron instillments can be done daily if necessary so that's a positive sign. They can be done during a flare for immediate releif or just weekly for continued therapy benefits. He was pleased with my pain and voiding journals and my extensive medical notes. I listed all the books I've read on IC and the research that I've done on this website and others. He said I'm probably 75% more informed than his average patient. He said he doesn't see any need to do the potassium chloride test to confirm both of our diagnoses. He said I have signs of early stages of IC but not to be alarmed because I've already been on the Elmiron for 3 months and with the future instillment therapies I'll be receiving he feels that remission isn't all that far away.
I'm very nervous about the Urodynamics and it causing a great deal of discomfort but he said he would not send me out the door in any pain + I'll be getting my first treatment right after the tests so I should be okay. I just hope he's right and things will start to brighten up in my future.
The long drive yesterday seems to of started up a major flare and as you all know I CANNOT MISS ANY WORK OR THEY'LL LET ME GO. So today will be probably the toughest day for me yet. I'm a little aprehensive about his not believing in "pain meds" but will have to take a little bad with all my good news that I'm reporting. His nurse travels all over and speaks about IC and the new heparin and elmiron instillments so they know what they're doing and what they're talking about which is a huge advantage over the uro I was seeing here in my hometown.
He also told me to try Prelief for a while and see if it really helps. Our local pharmacy and grocery stores are now carrying it so it will be interesting to see if it works. I just have to take baby steps and do one thing at a time right now. Some prayers and kind words of encouragement will get me through the next few weeks, I hope.
My new doctor also put me on light duty. No pushing, pulling or lifting anything over 10 lbs. and again I'm sure work will blow a nut about that too.
SORRY THIS POST IS SOOO LONG - REALLY NEEDED TO GET THAT ALL OUT TO ANYONE THAT MIGHT UNDERSTAND.