Blood is thicker than... pee...

Last week I was following up with my doctor on various things including my desperate pleas to let me start estrogen again... (no female, 30 year old body is meant to live without it and needless to say... it’s been rough.)

While I was there he asked for a routine urine sample. Just business as usual. 

Then two days later I woke up and once again my drain bag was full of blood. Not the tomato soup like last time, more like a cranberry juice cocktail. 

It's weird because the blood must be denser than urine so it all sinks to the bottom of the bag and the urine rises to the top... So it looks like some repulsive version of a tequila sunrise. 

So I called my doctor and asked what he wanted me to do... well what do ya know? He was just about to call me and tell me I am the lucky abode of a new bacteria. I didn’t even know there was any bacteria left that hadn’t taken up residence in my urinary tract. So he started me on an antibiotic that this bug is sensitive to... 

The days have were long but I finally started feeling better and was even able to go watch my son play t-ball. (It's adorable.)

So you’d imagine my shock and fury when pain tore me from a dreamy pre-sleep state that night! My stomach was so swollen, the pain started in my back and wrapped around to the front, and it truly stole my breath. 

I emptied my urostomy bag then got directly on the shower because... well that’s just what I do... I looked down and saw dark red streaks of blood streaming out of my stoma.

Awesome. 

The blood and pain came and went until finally I dragged my angry behind to the ER once again... only to find out I have kidney stones!!! 

Why? Like seriously why? This is something that my body brought on itself! I am not an oyster turning pieces of sand into majestic pearls, I am human with a freakish urinary tract. And yet. Here we are. 

They put me on some meds that are suppose to help them pass and said to expect it to get worse before it gets better then sent me home with a little strainer to try to catch the stones in. 

The blood and pain have continued to come and go but when it comes it's more severe than ever. 

Currently my urine is the color of fruit punch and the I feel the thump of the throbbing pain all over my flank and abdomen. 

At least, for once, I feel proactive during a flare of issues. My new urologist ordered a 24 urine collection test and I am thankful that things are so bad while they're testing it so they can get a true sample of the state of my urinary tract. 

It's a weird process. I pour a little bottle of preservative into a big jug and then I empty my bag into this big jug for 24 hours. Then I shake it up... wait no, first I make sure the lid is screwed on securely then I shake it up like the worlds most disgusting cocktail and then I pour just a tiny bit into a vial and mail it to the lab. Weird. I'm not 100% clear what they test there but apparently it should show us quite a bit... 

I have become obsessive about monitoring the color of my urine. My favorite urostomy bags have a nice, soft lining on top so I don't have to see the repulsive view of my stoma and urine all the time but now I want, no... I NEED to see it. So I cut the lining off so it's as clear as a ziploc and I can see straight to the putrid swill that is my urine. 

A couple days ago my urine was the color of the first drips of stagnant water from a rusty pipe. Which the doctor informed me means the blood is old and therefore the stone was probably in my ureters. It has varied a lot and I try to analyze what every shade means!

Obviously everyone knows having kidney stones is a bummer but I've been so surprised how many people have assumed that because I have a urostomy it's going to be so much easier for me... Clearly the majority of people are uninformed about the sheer horror that is having kidney stones. 

First a kidney stone is formed. 

Then it sloshes around in your kidneys and maybe that causes tinges occasionally but for the most part you live with it. In fact I think a lot of people live with stones in their kidneys for years! 

Next it decided to migrate. 

It reaches the ureters and your ureters are like whoa, whoa what are you doing here? We only process liquids... you're trying to go through the wrong exit. The stone persists that it was all a big misunderstanding but it's too late and this is the only way out. The ureters begrudgingly give up and let the stone through. 

Then it tries to move the stone along because after all it's a stone and it can't move (or speak for that matter but that's neither here not there) so the ureters contract to try to give the little intruder a boost. The contractions themselves are brutal but with a particle lodged into the tiny tube it is unbelievable. 

So then the stone is like oh man, I better just try to settle in and make this my new home. Which causes constant pressure and discomfort but at least it's not the intense, breath taking pain. 

It realizes this isn't ideal either and continues the trek to the freedom of the toilet bowl. This causes the pain to alternate between sharp, earth shatter but short lived to achey, dull and constant.

Occasionally the pain even stops all together! After one intense pain session I emptied my bag into the strainer that the hospital gave me. I was sure that I had passed the stone but all I did was catch a whole bunch of blood clots and mucus. Nasty. I felt like I was paining for gold in an old goldfish bowl. 

Then in a normal person the stone would finally get to the olympic swimming pool that is the bladder and it would slosh around in there for a while until it is forced out with the urine and there is intense but very quick pain while, and after, peeing it out. 

However. For me. My stone has a much different journey. After the ureters it goes straight into a fat piece of small intestine. I'm not sure about the pain this will cause because it's not there yet but it's troubling. Although there aren't nerves in the ileum (the piece of intestine used for the conduit) it just can't be good. Sometimes if I drink a lot of fluids the pressure of the urine spraying out of my stoma hurts so I would imagine a little stone rocketing through it wont be great. 

So what I'm saying is although I do get to miss the part where I have to pee it out but the most severe, mind blowing pain is the voyage and let me tell ya... It's brutal. 

I don't know the size of the stone but with a urostomy there is a fear of obstruction or damaging the stoma so I'm obsessively monitoring the pain and blood as well as my vitals and temperature to make sure it doesn't get worse. 

If it doesn't pass on it's own then they might have to use a laser thingy to break up the stone so I can pass it or put in a stint to give it plenty of room. 

But here's the thing. I don't have time for these shinnanigans! I need these stones out NOW! I need to feel better and have energy and not be in pain... 

Because... Something new and unusual for this blog... I have good news!!! We’re going on a trip to San Diego to celebrate my Mom's and my birthdays and Mother’s Day! My son made a paper chain countdown, I think we’re 7 days away! We’re all super excited!! 

Of course I’m also really anxious. About everything. From needing my urostomy bag patted down while going through security at the airport, to being able to walk the miles around San Diego Zoo to knowing where the best beaches and food are, to just feeling okay throughout the trip so not only I can enjoy but my Mom and Zach can too! 

I hate being such a burden and I would love for them to truly be able to be on vacation for just 5 days! 

Also I hope Titus has an amazing time and we can make some good memories that may blur all the bad ones... the other night we were talking about bikes and he said “okay, I’ll just say it. You don’t have a bike because you’re always in bed...” Ouch. The truth really does hurt. 

I am so frustrated with all these setbacks and new problems that keep popping up. I want to move on and live a life and help others instead of needing help and encouraging my family to live life to the fullest instead of dragging them down with me. 

ANYWAY! I kind of got in a little pity pit there for a sec... I'm good now. I never had a single problem with my kidneys before my bladder was removed and now it's my main battle. The infections and now the stones! It's too much!

Don't assume just because they function well and you've never had an issue that it won't be a problem after surgery... I know I say this over and over but please don't forget that you are not cured when you have your bladder removed. You are just trading one batch of symptoms for another.