My New Normal.

Since I've crept back into the world of IC I have been asked regularly about my experience of "getting my bladder removed". It's a touchy subject and I tell different parts of my journey to different people based on where they are at in their own IC saga. However with the anniversary of the beginning of the end of my bladder's life just yesterday I thought maybe I would share my whole story.. The good and the bad, the gross and glorious, the expected and surprising... All of it.

Brace yourself.

Settle in.

Do you need some refreshments?

Okay, ready when you are....

Action.

It all began on a cold, dark morning... Okay that's a little drastic. New beginning.

On December 30, 2013 what started out to be a surprisingly typical day for me ended up being a day that would forever live in infamy.... Maybe a touch too dramatic but let's leave it just for the flare...

I was headed in to the OR once again.. for my 26th surgery. They were going to do a hydrodistention (stretch my bladder by filling it as full as possible with water), inject my bladder with a whole bunch of botox (to keep things tight to help with incontinence), laser off any new hunners ulcers, and remove my two interstims (neurostimulators that were placed in my low back to theoretically help my bladder's dysfunction but hadn't been working for a long time).

It started like any other surgery day... Get to the hospital at 0 dark 30 (I have no idea what that phrase means...), change into a gown, answer a billion questions, confirm my identity and allergies, get an IV in my ridiculously hard veins that have been used and abused over the years, settle into the pre-op bed and then wait for the flurry of nurses and doctors to come get me when they were ready... 

However when the anesthesiologist showed up I could tell something was off... She glanced at my chart, acknowledged my warning about predictable post-op nausea and vomiting then declared I would not be having general anesthetic. She was going to give me a spinal and put me in a "twilight"... I was very concerned.

As a general rule I don't like change... Especially when it comes to certain traumatic topics. One of these such moments came years before when I was actually having one of my interstims revised... The anesthesiologist used a similar technique with this suspicious "twilight" except when I woke up in the recovery room, I remembered so much of what had happened to me in that cold, white room. I remember the feel and smells of my body being sliced open as my doctors casually chatted, I remember them searching for the right spot for my interstim lead to go, I remember my doctor asking what time it was then saying something like "well this will just have to do...", I remember crying, screaming, reaching out for someone to hold my hand... Then it was all dark again...

So needless to say I really just wanted them to fully knock me out this time... I didn't care if they did it road runner style and dropped a bolder on my head, I did not want to remember a single thing.

But on this day in December this young anesthesiologist had something to prove. So despite talking directly to my urologist, the surgeon preforming the surgery, and my desperate pleas... She decided to give me a spinal and some light sedation.

Well... The surgery went fine however after I woke up I was unable to empty my bladder, like at all! Not even a drop. They scanned my bladder and it had over a liter of urine stuck inside but no matter what I did I couldn't get it out.

I was never able to urinate on my own ever again.

I don't know the reason... Maybe it was just a coincidence, maybe too much botox, maybe the spinal, or maybe it was from removing the interstims... I don't know. No one knows.

My urologist and I spent 3 brutal months trying to patch up my bladder to at least the level it had been before that fateful day in December but it was to no avail. It got to the point where I wasn't just fighting for my bladder to work again... I was fighting for my life.

The various substitutions for urinating as God intended were each more horrible than the last... Feel free to read some of my blogs I wrote at the time... 

http://how-ic-it.blogspot.com/2014/01/diary-of-mad-ic-patient.html

http://how-ic-it.blogspot.com/2014/01/hell-cath-not-fury-like-ic-patient.html

http://how-ic-it.blogspot.com/2014/02/super-pubic-to-rescue.html

My beloved urologist who had been by my side since almost the beginning didn't know what else to do for me. My bladder was essentially a dead, useless organ inside a healthy body waiting to live. The only possible option I had left was to remove the diseased sack that had been torturing me for most of my life.

There was no begging, no convincing, no proving, no contemplation... It needed to be taken out before it took me out. 

So I went to the premier oncology urologist in the state at the University of Washington. He told me he did not do diversions at all, they were far too risky, he took bladders out he did not make new ones. He did some research, talked to my urologist, sent me to some other specialists and then he agreed. We had to remove my bladder and my urethra.

In technical terms I had a radical cystectomy with an ileal conduit. He was able to do it robotically through a few small incisions and then a little bit bigger one in the shape of a hook around my belly button that he actually pulled my bladder out of. The doctor couldn't believe how horrible it looked once they got it out, it was truly ruined and diseased and did not belong inside of me anymore.

Once they removed it they needed to create a new way for my body to release urine... So they created a little extension that went straight out of my low abdomen using a piece of small intestines... 

These charts really helped me understand things... I had it done to me and I still can't explain it very well... 

Typical Urinary Tract

Typical Small Intestines 

My new urinary tract. Kidneys, ureters, then ileal conduit, then stoma. 

The recovery was brutal. Here are some of the blogs I wrote during that time...

http://how-ic-it.blogspot.com/2014/06/oh-horror.html
http://how-ic-it.blogspot.com/2014/06/carry-on-baggage.html
http://how-ic-it.blogspot.com/2014/06/i-found-hope.html

As the months passed I grew more frustrated by the debilitating abdominal pain I was still having. Everyone blamed it on surgery side effects but my small town physicians assistant had the wisdom to send me to get a CT scan just to be sure... They found a major obstruction in my small intestines where they borrowed the piece for the conduit.

I spent the next 10 days sicker and in more pain than I had ever been in my life. The blockage was so severe that I was actually vomiting poop because it had no where else to go. They jammed a tube down my nose and into my stomach that was constantly sucking up waste but it couldn't keep up. They put me on strict "bowel rest" which meant no food or water and constant draining from the NG tube until the blockage cleared. The tube was unbelievably uncomfortable and make it impossible to speak or even swallow.

But finally it worked and the blockage was cleared.

However little did we know at the time, we had just fixed the symptoms not the greater problem.

Months later thanks to a no nonsense, straight forward, yet completely lovely and kind surgeon they found a stricture in my small intestines. Which basically means that when they took that piece of intestines out then restitched it back together, they did it too tight so there was a narrowing that things kept getting stuck in.

So in January... A year after this nightmare began they sent me back to the OR and opened me up with a mid line incision (from above my belly button down to my bikini line) and they untangled my gnarled intestines, cut out the narrowed area and then repaired it so it was wide enough for things to easily pass through.

Almost the full incisions after the stitches were removed...

That was another hard recovery.. I was taking around 20 morphine a day and I was still barely functioning from the pain. Eventually, thanks to an awesome pain management, post-op, and physical therapy team I got off the meds and was finally on track for a healthy life!

Then that frilly, dreamy, healthy life came to a screeching halt as nausea, pain and other weird symptoms starting showing up fast and furiously. It didn't take long to find out I had a UTI  (yes you can still get a UTI without a bladder...) that turned into a nasty case of nephritis aka a kidney infection. It took weeks, so many rounds of trial and error, dozens of doctors, several antibiotics, two hospital stays and some out of the box methods to finally tame the infection. 

While I was in the hospital I had some fancy shmancy infectious disease doctor that everyone treated like some world renowned king of the doctors but the only thing royal about him was his jerkiness (I'm so good at insults). He was sure that I was either a drug seeker or a crazy person who was desperate for attention or perhaps it was all in my head. Don't worry... He documented that in my charts. Helpful.

Thankfully, once again my dear physicians assistant saw past the malarkey and trusted me enough to dig deeper into the issue. Dr. McEnroe (the super mean ID doctor's name was similar but I called him that because of the infamously sassy tennis player) was so sure I was wrong about my infection that he took me off of all antibiotics so when my PA tested my urine he actually found out I had two kinds of bacteria in my urine. The problem had been that they would test my urine and it would show e-coli so they would put me on the antibiotic for that but then when it wouldn't get better they would test it again and they would find the enterbacter bacteria and change my antibiotic. Round and a round we would go... Never fully killing the infection before changing to the other antibiotic. So actually if it hadn't been for that dipstick doctor who knows how long it would have taken to figure this out. A blessing in a very good disguise.

My PA put me on two kinds of antibiotics at the same time (one of which I am allergic to and am forced to take Benadryl with to keep from getting covered in hives but it's the only one that works) and FINALLY I felt better! Like totally fine! My PA wanted to check my urine just to see so I happily dropped off what I thought was a perfectly clear urine sample (it didn't smell, didn't have any gross chunks floating around, and was even a lovely light yellow color) but just a few days later I got a call from the nurse telling me that my urine came back positive for bacteria.

I was so confused and frustrated. What in the world did that mean?!? Thankfully I got in to see my PA and he explained things to me... When they introduced the piece of intestines into my urinary tract (the ileal conduit, refer to the chart above) they also introduced bacteria into a usually sterile system (your digestive tract is not sterile while your urinary tract is). So for some reason a whole colony of bacteria decided to take up residence inside my crazy, redneck modified urinary tract. He said this was actually okay and I could live with these bacteria in there as long as they just remained calm and didn't turn into infections.

This is pretty much what I asked him... "So is it like hobos? Like we acknowledge that no matter what we do they are going to be around so we might as well give them a tent city and as long as they live peacefully they're welcome to stay? Controlled chaos basically?" He paused for a moment then in a very respectful way said something like "I don't think I would have ever put it like that but I guess you could say that. Sure."

Good. I had a whole tent city of bacteria and as long as they were happy, I was happy.

They kept their end of the bargain for about two months but then my maintenance of their little village started getting a little lax. They didn't care that it was December and I was busy... They needed rest, hydration and low stress to keep their little society functioning! After a few weeks of not having their demands met they went into full on protesting riots.

In other words. Those happy bacteria multiplied and got serious causing a big time infection. Thankfully we had a plan. After 3 days of serious symptoms I went straight to the pharmacy and picked up the two antibiotics that had neutralized the infection before. After a few days of rest, water, and the almighty antibiotics I started feeling better! Phew! The bacteria tucked themselves back into the confines and all was right in the world of my urinary tract.

Of course nothing worth writing about ends that easily... As instructed I was going to finish my full round of antibiotics even though I was feeling much better. So one night I took my fistful of meds including the antibitoics, Benadryl and my nightly Phenergan to calm my ever present nausea. The next morning I woke up feeling a little tense and my throat felt tight. I assumed it was because of the allergy to the antibiotic so I took another dose of Benadryl as well as another Phenergan.

I thought I would take a nice little nap and wake up just fine so my Mom took my son to school and then was having brunch with a friend when all of a sudden the tension made my toes curl then moved up to my calf muscles and continued until it reached my neck. The next thing I knew every single muscle in my body was clenching and contorting. I had zero control of my body as my head and shoulders thrashed from side to side, my back arched, my legs tucked under me. I picked up my phone with my fingers tensing and releasing like spider legs and clumsily dialed 9-1-1. I calmly told them I was having an allergic reaction. I hung up then called my Mom telling her the ambulance was on it's way.

I had what's called a Dystonic reaction which is kind of like a mix between a seizure and a bad episode of Parkinson's Disease. After a shot from the epi pen, loads of Benadryl, steroids, tons of muscle relaxers and an overnight stay in the hospital to make sure my vitals went back to normal I was released from the hospital with the thought that I was now dangerously allergic to the antibiotic and to not take it again. I asked numerous times if they were sure it wasn't a reaction to phenergan because I had had the exact same reaction to 2 other antinausea medications before but the doctors were insistent. 

I was tense and sore from the hours of thrashing like a beached shark but I mustered up the energy to go to a sing-a-long version of "White Christmas" with some of my favorite ladies then I got home and took my nightly Phenergan and benadryl.

The next morning after the benadryl wore off but the phenergan hadn't the reaction started all over again. This time my Mom and my sweet, terrified baby boy were home to witness it. We went through the exact same motions except this time the ER doctor agreed that it was the Phenergan not the antibiotic. He saw the desperation and experience in my eyes and lovingly sent me home with an anti-seizure med and high dose of valium to continue to take around the clock until the spasms stopped.

The medicine made me crazy but sure enough after the Phenergan was out of my system the spasms stopped and I was back to normal! After it was all over I told my husband I wished I had video of myself during the dystonic reaction and he shook his head and told me I did not want to see that. He said it was like something out of "The Exorcist" and was terrifying to see. After thinking about it I do remember being between "episodes" and my muscles were shaking from sheer exhaustion and I panted as I saw the fear in my Mom's eyes...  Then it would start again so they would inject me with a shot of something and it would stop again... Thankfully I don't remember too much more than that.

Things went back to normal eventually, of course that only lasted a couple weeks... Those pesky homeless bacteria noticed that they didn't get the full anti-riot treatment (because they had me stop them in the hospital when they thought that was causing the reaction) and they weren't having their high demands met so they started up again.

That leads me to today. On day 3 of a really bad version of the same old infection. Flank and abdominal pain, exhaustion, nausea and vomiting (I miss you so much dear Phenergan), the urge to pee (I know it doesn't make sense...), and the rancid smelling and looking urine. I just started the antibiotics and hopefully after a few days of copious amounts of water, rest, and the antibiotics I will be back on track.

In the meantime I'm missing out on family time at the cabin for New Years... I can't believe this whole thing, when my IC went from chronic to life threatening, started 2 years ago! I can't believe that this is the life I lead now... Pampering and maintaining a village of bacteria, always in fear of them flipping out and disrupting my life with infection mode.

Maybe some day we will figure out a better way... Maybe we won't. Some days I can find the thankfulness for the good days that are so much better than the bad ones I've had over the last 2 years. Some days I am just angry. Some days I am scared that eventually these bacteria will stop responding to these antibiotics and the infection will go full blown untreatable nephritis causing kidney failure and who knows what else... Some days I'm just happy to have made it through so much already and still smile every day.   

This is how things look now... I've gained weight who knows why, my incision has healed but is still tender and red, and I always have a bag of pee hanging off of me... (This is nice, uninfected pee by the way!)

                                     

While I was in the hospital for the last dystonic reaction, my body forced me into a tiny ball of tense muscles the nurses took turns stabbing me with shots because they couldn't get an IV in and one of the nurses told me "you can do this. You have gone through so much worse. This is nothing. You are strong. You are a fighter. Keep smiling. Keep laughing." Then she made me tell her about my miraculous, blessing of a son while I fought for control of my tongue that was trying to fold back into my throat. It worked. Well it may have been the innumerable shots into my legs, bottom and arms but either way I got through it. Just like I always do.

This is my life now. I will say it again... It's not better than IC, it's just different. It's scarier and worse when it's bad but it's also better when it's good. I hope I can calm the resident bacteria soon enough to enjoy some family time on this special weekend.

Here's to 2016 and whatever it brings...