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Ages ago I had a cystoplasy done plus a mitrofanoff to help me with my ongoing issues with my birth defect – bladder exstrophy. The cystoplasty was actually a re-do from my original one in ’83. When I was sliced open my augmented bladder had adhered itself to my uterus and it was much easier to just re-do the cystoplasty, so in essence I’m on my third bladder iteration (or my second neo-bladder). The goal of all of this was to make my life easier, as my urinary sphincter (yes Virginia, there is more than one sphincter in the body) refused to work after multiple surgeries. I was getting a UTI once every 2-3 weeks, and other embarrassing events.

So the goal was to make my life easier. And in some ways it is. For the first time in my life I don’t have to worry about leakage, wearing pads, and have a relatively clean-cathing process. But the downsides have been massive. When I get sick now, it’s major .. no more simple UTIs, oh no. Now it’s things like sepsis, kidney infections, bladder stones, fungal infections of the surgical site, and though not as many UTIs the ones I get are major.

If I could turn back the clock so to speak I truly believe I would get this reversed, if it did any good. Granted I was on Depends and there was the social embarrassement of that, but atleast I was never sent to the hospital nearly dying from an untreated UTI that decided to turn into sepsis. And if I could I would never had made the decision to do the surgery.

But I have also been reading various bladder exstrophy sites, different urological papers and they tend to agree with one thing. Anyone, just about anyone, who catheterises has a greater chance of sepsis than someone who uses their urethra in the regular way. So I could have gotten the sepsis if I hadn’t had the surgery, I don’t know.

All I know is that I am very tired of my body not obeying me. It’s breaking down and there’s nothing I can do about it.

I rushed myself to the ER yesterday cos I had abdominal pain, and it wasn’t the pain I was getting this year associated with gall bladder issues. This was a different kind of pain, with major spasms .. very similar to the spasms I had last year before I vomitted blood, passed out, and got intibated while being rushed to ICU.

I am scared. I cried last night out of frustration and fear.