My doctor never gave up and we kept trying different things to make it stop. Nothing was working and as each day, week, month and year ticked off on the calendar, it got more and more painful and challenging for me to cope with the situation. I sat in my doctor's office in tears because I was getting infections back to back with less than 48 hours between clearing one infection and getting another. They were never the same bacteria, so it wasn't that I just didn't get enough antibiotics to clear up the infection. I was getting a new and different bacteria almost every time. Things were at their worst at the end of 2012 when I thought I just could not take it anymore. Even as this year began, I got 2 infections in January and February. I looked at my doctor through my tears back in February and begged "is there NOTHING to be done?" He held my hand and tried his best to reassure me that he was going to work doubly hard at finding an answer.
Lucky for me, I have a doctor that never gives up and will follow up and do research after you leave his office. The very next day, he had his nurse call me with a new plan. The timing, I believe, was a stroke of fate. I had just finished taking my last dose of an antibiotic for the most recent infection. The nurse gave me my new instructions. My doctor was prescribing a new prophylactic anti-infective that I was to start immediately twice a day. I was to continue to self-catheterize daily (I have severe retention which contributes to infections as we all know) but he wanted me to actually do it more often, not less. I was told that he understood it seemed counter intuitive, since catheterizing can often be the cause of infections. In fact, I thought that's why I was getting them, but after all this time, my doctor believed it was more related to my retention than the self-cathing, so my instructions were to self-cath at least 3 times a day, but he would prefer 5 times a day. Then I began vaginal estrogen, which can also help prevent infections, and I was to do that twice a week. In addition, we were continuing my weekly instillations (which help ME a lot) but he was adding gentamicin to my cocktail to help prevent infection as well. So we had a four pronged approach to try to get this under control.
So on February 5th I began this treatment regimen. And the good news is I am just a few weeks short of hitting the 6 month mark infection free! The plan is working and I am beyond grateful! My IC is challenging enough all by itself, but with this added problem, it was making life so much more miserable, and I would not have thought that possible.
Six months infection free after a 4+ year battle is a huge accomplishment. I am so pleased and relieved that we were able to find a plan that finally beat back the bacteria nightmare I was in!
This is a lesson in really, really never giving up. As hard as it was when I was going through it to handle, I never lost faith in my doctor and he never gave up trying to find a way to help me. Persistence has paid off big time. I know that it's possible someday I could get another infection; it's always a possibility for patients who have suffered from chronic UTI's to get them again. But we have broken the cycle for now and I have been grateful for each and every day this year that I know I don't have another infection. Now I count the days on the calendar in a positive way; how many days is it that I have NOT had an infection.
I'm actually optimistic and my goal is to get through the rest of the year without an infection. If I can do that, I will truly have something to celebrate!
The Good News Is - I am only 2 weeks away from hitting the 6 month mark being infection free! What a gift and I don't take it for granted! Thanks to my fantastic medical team that fought for me and never gave up!