One of the many bizarre things about having a urostomy is being so up close and personal with your urine. All day. Every day.
So when I start to feel a little strange I constantly check my bag to see how the urine is looking.
I've had some pretty brutal UTI's since my cystectomy... I was unaware that you could even get a urinary tract infection when all your measly urinary tract contains is kidneys and ureters. But I'm here, living my life, as a medical specimen to confuse and push medical professionals beyond their understanding. You're welcome future.
Because I am lacking so many parts that make up the machine that is the urinary tract it's tricky to catch infections... After a few bouts of being a little overly cautious I found myself doing the complete opposite. I starting ignoring symptoms.
So this time it took nausea, diarrhea, extreme fatigue, dizziness, increased fainting, abdominal and flank pain, abdominal and flank tenderness, the urge to pee even though it's been over 3 years since I had a bladder or urethra, and a fever before I decide to drag my pathetic behind to the doctor.
Sure enough... I had the worst e-coli infection I've ever had.
I started antibiotics and started feeling good! I was able to celebrate my 30th birthday with much jubilation and even spend memorial weekend at my Grandparent's cabin with lots of family!
But before I knew it... I was feeling pretty lousy again. I blamed it on the side effects of the antibiotics but when my Mom questioned why I was still on them I realized I had been really slacking at taking them since I started feeling better and was like 5 days behind... Oops.
In my defense! They're huge pills and they smell disgusting! I have to take them with food and I've been having such a hard time eating lately. But still... You would think I would know better. Shame, shame.
After a moderate amount of... let's call it... encouragement from my Mom, I finished the antibiotics but I am still feeling almost as bad as I did before I started these pills that a dog wouldn't eat even if it wrapped inside bologna and cheese.
I called my doctor and fessed up to my failure and he ordered a double dose of the same antibiotics for 10 more days. Brutal.
Turns out that old wives tale you hear about finishing the entire course of antibiotics even if you feel better is actually true.
Who knew?
Who knew?
But the real purpose of writing this blog is because I feel really compelled to share something.
It's like when you take a bite of something that gross and you demand that your loved one's try it as well. Sometimes misery truly does love company.
It's like when you take a bite of something that gross and you demand that your loved one's try it as well. Sometimes misery truly does love company.
Wait.
Are you eating?
Finish eating and then come back.
Ready?
This is your last chance to stop reading before I gross you out...
Okay. Don't say I didn't warn ya! .
A few hours ago I emptied my urine drainage bag that I hook up to when I'm in bed. After a failed attempt at going downstairs because I was so dizzy I started to reconnect to it when I noticed something.
The bag that I had just emptied my urine from had mold.
The bag that I had just emptied my urine from had mold.
That's right my brave, loyal readers. There is so much bacteria in my urine that it's actually creating visible mold in an otherwise sterile environment.
I disgust myself.
Aren't you glad you took the time to read this? I, for one, feel better after getting that off my chest!
Alrighty. Have a nice day! I'll write again soon!
Xoxo
Oh sweet Deni, bless your heart and all that you've been through already, during your 30 years on this planet...I have got you in my prayers ALWAYS!!!
ReplyDelete-Krista Wooten XOXOXO
I am so very sorry! I am experiencing a flare and I am about to lose my mind.
ReplyDeleteDeni, my wife is at end stage with this IC thing. Years and years of ineffective treatments and tens of thousands of dollars out of pocket. We are now looking at the SP catheter and/or a pain pump. I haven't read all your posts but do you feel the catheter was the right decision for you?
ReplyDeleteI had a so very briefly and it was BRUTAL!! I ended up having a cystectomy, my bladder and urethra removed... it definitely rid me of the ic symptoms but there have been so many complications and difficulties that have come with that. I would make sure you've had 2nd and 3rd opinions and have tried everything before she looses her bladder! I'm so sorry you guys are going through that, she's lucky to have you as support!!!
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