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. 

Loopagram.

People who know me are always shocked when I’m speechless, whether it’s because I’ve had a bite of something that is so delicious that words simply won’t do it justice or because I’m overwhelmed with the many ways to mock my loved ones that sputtering sounds are all that comes out... (I relate to Chandler Bing in so many ways...) 

Rarely am I left speechless from the sheer horror of a situation. 

Well today was that day. I’m home now but I haven’t even told my sweet family about what happened after they called my name at the hospital today... they’ll be finding out with all of you! 

I’ve been having flank, abdominal and stoma pain along with blood in my urine (did you know it’s called hematuria? It’s far too cheerful... it sounds like something I’d order with a side of rice and beans or with extra cherries...) on and off for over a month now. Then they saw a fleck in my kidneys on a ct scan that may have been a kidney stone so they sent me to a specialist. 

For most people a kidney stone is a painful nuisance but when you have a urostomy it can be really dangerous for many reasons. 

The doctor order another ct, this time with contrast and a loopagram. 

Even after I had scheduled the appointment for the loopagram I wasn’t 100% sure what I was in for but I knew they would be checking my ilieal conduit. They told me I needed a driver so I was prepared for a little procedure in which I’d be at least a little sedated but other than that I didn’t know what to expect. 

After I checked in and was waiting to be called back for the test I was nauseous from the nerves and began pacing in the waiting area. The news was blaring which was making my anxiety even worse so I brazenly marched to the tv and turned it off. 

Then they finally called me back and the tech asked the usual question about why I had my bladder removed and I told her I had interstitial cystitis. Her eyes got big and asked “did you try taking elmiron?” 

Oh boy. I should have just turned around then. 

(For those of you reading this because you love me not because you hate interstitial cystitis: elmiron is one of the frontline IC treatments that I obviously tried multiple times...) 

After giving me the details of her apparently large bladder and painful sex life she asked me the size of the hole. 

“What hole?” I asked.

She just kind of looked at me then gestured to my stomach. I realized she meant the size of the opening of my stoma. 

“I’m not sure. I try not to look at it.” Then she brought these MASSIVE fire hose sized tubes into the room and asked me which one would fit. Neither! Neither will fit! 

I definitely should have left then. 

Then she took me to a room with a tiny bed under a big scanner thingy. She told me to lay down and take my bag off so she could check my stoma. I asked, “what about the pee?”

She handed me a tiny towel...

So I took off my bag and she decided the smallest one would be best (ya think?). Then I laid on a bed fully clothed with my shirt lifted up and a towel catching the pee that was dripping out for quite some time until she finally came back in.

She announced that the radiologist would be right in. Then she looked at my stomach again and noticed the pathetic skin that always has various degrees of irritation from the adhesive of the ostomy bag. She mercifully decided to prep the area with betadine instead of alcohol but then she SCOURED the entire area around my stoma with a wand with a hard, orange sponge at the end then (brace yourself) she pressed it firmly right on top of my stoma. That’s right. The piece of intensities that was drafted for the usage of my urinary tract that is protruding out of my abdomen that has been hurting for weeks... she squished and scrubbed with an abrasive sponge on a stick. The sounds that came out of me can only be produced out of pure agony. Some random nurse popped up out of no where and started telling me to breathe (always so helpful) and asking me if I wanted a warm blanket or cold cloth or a pillow under my knees. 

It was all so overwhelming. 

Then the tech rubbed lidocaine over my stoma telling me that should help. 

After a few minutes I was drenched in sweat from pain and terror then the doctor walked in. He didn’t even look at me or introduce himself. He went straight to my stomach, took the catheter from the nurse and stabbed it into my stoma then told me to hold it in place and the nurse turned on the contrast drip. 

At this point I was sobbing while trying to hold the tube still. Seconds later I felt cold liquid dripping all over me. I yelled that it was leaking out and the doctor sighed before shoving the catheter in a little further. I was trying so hard to control my wracking sobs but the pain in my stoma was so extreme. He turned on the scanner machine thingy and said he couldn’t see the contrast. I had given up on trying to tell him anything but I could tell that the liquid was just pouring straight out of my stoma. 

He finally realized it on his own and yanked the catheter out of me and asked for another one and told the nurse they’d have to inflate a balloon inside the stoma to seal it off. At this point I absolutely lost it, or at least whatever I hadn’t lost already... 

Then he looked at me with annoyance and maybe a tad of disgust and said, “this should not be hurting you. What’s going on? Do you not want to do this?” 

For some dreadful reason that I can blame on the excellent manners instilled in me as a child that confuse me I started apologizing! “I’m so sorry. I’ll try to be still. I mean I...” 

He cut me off and spoke to the nurse then left the room. I didn’t know what was happening but I was trying my best to get ahold of myself. The tech started asking me about where I went to school and talking about the prices of houses in the area. I think I managed to squeak out some responses but my stoma was throbbing and I was terrified. 

The doctor stomped back in and before I knew it I was gasping for air as the pain stole my breath again. This time he pushed the catheter in further and then inflated a tiny balloon inside the stoma. The pain was so overwhelming that I didn’t even feel relief when he said the contrast was flowing where it needed to. 

Suddenly I felt a ton of pressure in the middle of my abdomen and then my left flank and then my right flank as he filled me with the liquid. It hurt so bad. There’s no creative way to say it. Tears were streaming down my face and the pain took over my body completely as I whispered expletives I’d never say under my own authority. 

I started to feel fear rising up. Were they actually suppose to be doing this? Was this right? What if they didn’t know what they were doing? What if they caused my kidneys to fail and killed me right then and there? 

Before I spiraled too far out of control mentally I heard the doctor say he thought they got it then pulled the tube out of me. A mix of contrast and urine gushed out of my stoma and all over me and my clothes but I didn’t even care. I just laid there shivering with pain and shock. 

The nurse asked me a few questions until I finally snapped out of it and took the cold wet towels she offered me. I put an ostomy bag on and took my soaked pants and sweatshirt off. She handed me a pair of scrubs she got from the back and I slowly put them on. She apologized a few times but not with any real care or concern etched in her voice... 

As she walked me out she said the doctor thought the results were good, the test showed that there was nothing obstructing the kidneys and I should check to see if I have a UTI. (Because I definitely would have put myself through that torture BEFORE testing my urine for s Uti...) I walked out to my husband and after almost 10 years of marriage he knew by my face that it didn’t go well. I told him I couldn’t talk about it yet. He got the truck then picked me up and drove us home on the icy roads.

I got home and collapsed into bed and started sobbing again. My stoma and back were still hurting so bad that I dug for my old bottle of morphine and took a half. 

After the pain eased up I took a shower to wash the pee off of me. I ate some dinner and now I’m just laying in bed exhausted and drugged but also super scared that the pain will return after the meds wear off... 

I don’t know how much weight I should put in that dips opinion but my appointment with the specialist is next week and hopefully we’ll find out more then... 

(In a half hearted attempt to edit this blog I just read it over and I’m so frustrated and annoyed that it doesn’t even kind of capture how horrible this test was. So read this knowing that there is a certain levels of pain and horror that words fail to truly portray. So multiply however horrible you think it was by 6 and you might get close...I’m not great at writing these types of blogs but I think they’re important.) 

Scarred and scared

I remember a boy in 4th grade telling me he knew how to spell dessert verses desert because you want more dessert so there's more S's. 

That has nothing to do with this blog except my clever title reminded me of it. 

Moving on. 

I’m sitting in the bath praying that this hot water will have the magical healing powers that it used to possess for me.

As much as I try to avoid it I can’t help but glance at the body that’s bobbing under the water. (Wait. That sounded horrifying. There’s not a decaying body in the bath with me... I meant my own body...) I saw a scar I haven’t noticed for a while... I examined it until I finally realized it's from the JP drain I had after my urostomy. (It’s a clear bulb that fills with excess blood after surgery and is emptied with a devastating sound that surely kills fireflies or something dramatically terrible.) 

Then I started laughing out loud. (The echoey confines of the bathroom made the laugh sound menacing. What a freak.) It’s hilarious! I’m so scarred that I can’t even remember what gruesome scar is from what! 

My body is covered in stretch marks from a pregnancy and weight fluctuations, freckles from the sun, dozens of surgerical scars in various sizes and shades of pink, a bright red pulsing stoma, a urostomy bag half full of pee hanging off my abdomen, and a PICC line with extension tubing dangling from my upper arm. Plus all the blubber and blemishes most 30 year old women would complain about. 

My body is floppy and flabby, marred and mired, scarred and scoured...

It's... not great. 

If it was a car it would be one with multiple parts held on by soggy duct tape with a mismatched hood and a black trash bag window. 

Rough. 

But it's nothing compared to the inside. 

After 17 years of chronic and acute illness and sickness I think my  interior would resemble that of my brother-in-law's old project car that had a milk crate as a drivers seat... 

I’m starting to realize even when I start feeling better this rattletrap isn't going to start up on the first try and happily glide up a mountain. 

No sir. 

First I have to take it off the concrete bricks holding it up then listen to the hopeless clicking before a sputter and spit brings a promise of forward motion. 

It will take time to just clear the moss off the windshield.

This metaphor is getting away from me.

The point is. I've progressed leaps and bounds but I can't possibly expect to be in tip top working order... 

I've had a hard time trying to understand what is my new normal... Am I still chronically sick with bouts of feeling well or am I actually a healthy person with frequent spells of unjustified misery? 

What I'm asking... is a zebra black with white stripes or white with black stripes? 

I guess it doesn't matter but it's so hard for me to know what to say when people rave and celebrate my "good health". I let them applaud my progress because if I think about where I've been over the last few years, I really have made progress! 

So here's what I, and probably lots of others who struggle with chronic pain and illness, want you to know... we have good days and bad days, we have good weeks and bad weeks, maybe even good months and bad months but don't mistake a burst of energy and feeling better for a conclusion to our sickness. 

In fact, the bad times that follow the good... no matter the length of time.. are so much harder for us because we caught a glimpse of "normal" but then it went away. So then when we are back in bed for hours or days we know what we are missing. 

Right now I’m in a horrible cycle that brings fevers then blood in my urine then pain in my kidneys, abdomen and stoma. I’m exhausted and nauseous. I'm discouraged and desperate. I'm also terrified.

Something is wrong. 

I had a CT the other day and in a couple days I’m a having a loopagram... which unfortunately is not an exhilarating roller coaster with free graham crackers like the name makes me wish... honestly I’d wish for it to be almost anything other than what it really is... they will put a catheter in my stoma then inject dye into my Frankenstein urinary tract then scan me. 

They told me I need to have a driver so I’m hoping that means they’re going to drug me... 

If they can't figure out what's going after these tests then they might need to send a scope into the stoma and look at the conduit from the inside. They're going to need to need an elephant tranquilizer for that one. 

I've been forced to become a lot more brave and tough than I ever wanted to be but I still can barely look at my stoma and I've never intentionally touched it and now with all this crazy business it's so sore! Not to mention all the blasted work we did to make and then maintain a functioning urinary draining system... Now they want to... penetrate it. Not to sound like a total millennial but I truly CAN'T EVEN. 

Pray for me. Over and out. 

(I'm having a really hard time figuring out the tone and overall theme of my blog as a whole... I haven't been posting because I didn't think it made sense but I am at the point where I need to write and I figured I might as well post my ramblings... Hopefully one day I will figure it out and it will be a well constructed, reliable, relatable blog but... Don't hold your pee. (Get it? Like don't hold your breath but I said pee. HAHAHAHA!) 

Opti-freaking-mistic

Tomato juice

Fruit punch

Strawberry lemonade

Tequila sunrise

Capris Sun

I'm not making a drink menu for a diverse party... I'm just describing my pee over the last 48 hours. 

The picture below is not meant for shock value... just a tad bit of validation. 

This wasn't even as dark and thick as it was when I first woke up... Remember, no pity, just validation...

It’s been a hard couple weeks guys... 

I don’t really have it in me to type it all but to summarize... I’ve been to the ER four times, I spent five days admitted to the hospital, they found a blood clot, blood infection and my pee looked like variation of the aforementioned beverages. I am achey, nauseous and have an on again/ off again fever. 

I’m currently curled into a corner of the bath willing the shivering to let up and praying without any actual pleas or even suggestions. 

No one knows what’s causing all this so they are just patching up the holes in the boat as they spring up. 

I see the worry in my moms and husbands eyes so I try to think positive and declare that everything will be fine even though I feel my own fear welling up. 

I’m sorry this is so vague and patchy but it’s all I can do right now and yet I’m compelled to share this on my blog and with my dear readers. 

I know I preach about listening to your bodies but sometimes it seems like mine is speaking Dutch and I truly don’t even know where they speak Dutch... 

I know you’ve all been here. Forcing yourself to be opti-freaking-mistic and taking each day as they come while just posting your arms on the pillars to keep the house from crumbling around you... 

One last thing I think you guys can likely relate to... I have an idea of what could be wrong but I’m so scared of them thinking I’m just paranoid or that I'm playing Dr. Webmd that I’m hesitating to say anything... I don’t even know which doctors are truly on my team or what position they play anymore. 

What a difference two weeks makes... 

Two weeks ago my boys and I went on a little over-nighter to the Ocean... It was bliss. 

Fevered and exhausted. 

(P.S. It feels so good to be writing to all of you again, as soon as I'm feeling better I think I might get back in the swing of things! Thanks for being so loyal and supportive of the ebb and flow of my posts and health...)