I'm extremely upset with my instills right now! For about a year, they worked REALLY well. I sometimes got up to 5hrs of relief from one. Then I started having all these UTI's (which allegedly are NOT from cathing frequently... the bacteria type was unusual) and we figured out I have reflux.... adding to and causing me to have infections. To make the infections less painful, I upped my water intake from maybe around 30 oz a day to about 60 oz. About two months ago the instills just STOPPED working. They gave me only 10-20 min relief and then afterward I HURT MORE!! The heparin causes my bladder to bleed excessively.
So when I went in last time to tell my doc they'd stopped working he thought it was because I was deconcentrating my urine... the medications were not as effective. I tried reducing my water intake... but it has no effect upon my medications... and I just can't drink that little. It puts me in a large amount of pain, and I'm very thirsty all the time. I have to continue doing the instills 3x a day... "Even when I don't want or need to"... and I'm frustrated because I have no idea why it stopped working for me. Has anyone else had issues with medications no longer working? Did you ever get them to work again?
I was so close to remission.... and now I'm even further. I'm terribly dissappointed because it was the best tool in my toolbox, and now I need to go on to other more extreme treatments.
So when I went in last time to tell my doc they'd stopped working he thought it was because I was deconcentrating my urine... the medications were not as effective. I tried reducing my water intake... but it has no effect upon my medications... and I just can't drink that little. It puts me in a large amount of pain, and I'm very thirsty all the time. I have to continue doing the instills 3x a day... "Even when I don't want or need to"... and I'm frustrated because I have no idea why it stopped working for me. Has anyone else had issues with medications no longer working? Did you ever get them to work again?
I was so close to remission.... and now I'm even further. I'm terribly dissappointed because it was the best tool in my toolbox, and now I need to go on to other more extreme treatments.
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