I planned on writing blogs detailing everything that has happened the last year in chronological order except I'm currently going through one of the most difficult battles of this whole mess and I always feel like I can more accurately describe things while I'm in them so I have fresh indignation and hatred. Or so I can be more specific. Hard to say which... So. Enjoy the rant disguised as a blog.
We are smack dab in the middle of this techy generation full of abbreviations and acronyms But i am pathetically and perpetually confused. I seek counsel from my ever wise and knowing 16 year old niece on all things trendy for which I'm truly #blessed. Although imo, smh, dm, jsyk, and ikr mean next to nothing to me there is one acronym that I know all too well, the dreaded... UTI. Or for those of you that either aren't as hip as me or are just much healthier it's a urinary tract infection.
Back in the day when I had a bladder I would wish on a shiny penny that my IC flares could be explained with the news that I had a rare UTI because it meant that there was a reason I was suffering more than usual and I, for once, had a problem that had a relatively easy fix... Unlike my overuse of punctuation which unfortunately has no cure.
Now, most people probably assume you can't have a UTI when the majority of your urinary tract is missing. Well they're wrong. I do not have a urethra or a bladder but I do still have ureters and kidneys. Both of which are more than happy to get infected!
The problem is a little UTI that would normally be horrific and painful but easily treatable could be life threatening to someone who has such a botched urinary tract as myself.
First of all, I don't see the early signs of infections like increased bladder pain or burning when urinating for obvious reasons so by the time I realize something is going on I am lethargic, nauseous, having all over abdominal pain, have a fever, flank (mid back area) pain, and the old familiar but peculiar feeling that I have to pee!
When I finally realize there might be an infection I have to rush to have my urine tested since I know I already have a late start on things. However, I obviously can't just pee in a cup but I also can't pour some of the urine I carry around in a glorified fanny pack into a cup because it would be contaminated by bacteria in the bag. So I have to take my bag off, clean my stoma and then wait for the urine to drip into the cup. Depending on how much I've had to drink this can take up to 30 minutes... I have no control over my urine flow so I literally just have to sit there all awkward hunched over the pee cup, covered in a towel in case it spills and wait. This would hypothetically take longer if I got distracted by trying to see how high my urine fountain could go, I don't know that for sure, I'm just saying hypothetically.
Once they have the hard earned urine they can't just do a regular dip test because the piece of intestines that makes up my ileal conduit still has bacteria in it and the dip test will always show positive. So they have to solely rely on the culture results, which takes 2-3 days, to see if I have an infection and if so, what kind of bacteria is it and what antibiotic will it be sensitive to.
For me the challenge continues because I have an extensive list of allergies so they have to find one that I'm either not allergic to or I have to take Benadryl around the clock to prevent a reaction while taking the medication that I'm allergic to.
Which is what's going on right now... So as if the morphine and phenergan for the pain and nausea from the infection didn't make me sleepy enough let's dump in constant doses of Benadryl. I'm to the point where it doesn't knock me out it just makes me sooo tired and anxious! Every noise is too loud, every thought is too overwhelming and every person is too annoying but if I don't take it I get an itchy rash all over like I rolled around in some poison ivy. Not that I've done that but I imagine if I did... I'd be itchy.
So here I am. I've been on the antibiotic that I'm allergic to for 10 days. Some moments are better than others but I'm still really sick. There are a few possible explanations to this frustrating dilemma. 1. The infection is so bad that it's truly needing every dose of the prescribed 20 days of medication. 2. Because I've been on this particular antibiotic so many times my body and the little mutant bugs inside creating chaos have become resistant to it. 3. My body is just taking its sweet time to get back to normal after such an aggressive infection. 4. It's all in my head. 5. The aforementioned mutant bugs are making me think I still have a UTI so I will feed the little cannibals the antibiotics they crave. It could literally be any of those...
So in the meantime I'm left with the question of what do I do?! It's been 2 weeks since I sent in my urine sample and things continue to erratically get worse and stay the same. I went to ER last week when my heart rate was consistently over 100 bpm and my pain and fever were soaring as well. They did all the tests. Everything showed up as expected. They gave me an IV dose of antibiotics and sent me home on the same itch inducing meds I had been on. I still haven't heard the culture results yet but those aren't always conclusive after I've been on antibiotics because some cruel twist of misjustice can cause the otherwise ineffective antibiotic to show a false negative culture on my urine.
So. What to do? I've been sick for 2 weeks. Like really sick. In bed all the time and once again missing out on life!
Well, I did rally all my energy and took lots of meds so my hubby and I could take our kiddo, Titus to the circus for his birthday. I was on edge and drugged up the whole time, I was even seeing a lady hanging upside down from a curtain, an elephant playing the harmonica and dogs doing a conga line... Oh wait. Maybe those things were real. Hard to say at the circus but I hope Titus just remembers the fun and that we were there as a family and not my questionable mental state...
Last time my infection was this bad I ended up getting admitted to the hospital but I don't want that... They don't even really know what to do with me there but my doctors are at a loss. So as incredibly ironic as it is... I'm going to my old, faithful urologist tomorrow. I never guessed I would need a urologist when I no longer had the equipment she usually works on. It's like a car showing up to the mechanic without an engine... I guess there are still bits to work on but it's just a little strange. Anyway. Hopefully she knows some out of the box antibiotic to try or maybe even has some advice to prevent future infections.
In summary... If you're prone to UTI's, you will likely still get them even if you don't have a bladder. Further evidence that IC is not greater or less than life without a bladder. It's equal.
(P.S. I'm having such a hard time getting back into blogging! What I could have cranked out in a couple hours back in the peak of my blogging days took me days to write. It's also lacking some of my confidence and easy whit but bear with me and hopefully I'll be back in fighting shape soon!)
