Thursday, January 01, 2015

The journey to hell...

This is going to be my tale along this bumpy road of having my bladder removed due to Interstitial Cystitis. This is a long story, a lot of setbacks, a re-admission, and lots of pain. This will be multiple installments as it is a continuous journey.
It's my journey to hell...
But it's not a bad journey cause in the end I fight my way back.
So let's start... Dec 4th was my check in day at the hospital. All was good, I was calm.. almost in a surreal way. Like I knew I was about to face the most complex and scary thing of my life. I was undergoing a 10 hour surgery and would have a lengthy recovery.
But still, it was surreal.
I was taken to my room, I remember exactly 9th floor of the cancer center, room 935.
Honestly it was kinda a day of nothing when I got there. They didn't have orders for me yet so I really just hung out in my clothes watching tv for a couple of hours til things got started. First things of course, the overly sized green gown that could have housed 3 of me comfortably.  The IV that would come to be a pain in my ass when my veins blow every 12 hours. Fluids... hydrate hydrate hydrate
And then.... the dreaded clean out
Why.. because during this surgery, they remove a couple feet of your intestines and conform them into a new bladder or "Indiana pouch" that rests on the inside of your abdominal wall. So your intestines need to be clean. And this entails drinking a GALLON of golytely which is fancy for miralax.
Dec 5.
They took me down to surgery pre op at 6 am. It was quite busy with residents, anesthesiologists, and nurses. It all was kinda a blur. I talked to so many people and I signed my life away several times. I listened to all the what ifs and risks and knew that no matter what the chance of a pain free IC life outweighed all of that.
I kissed my loved ones and they walked away as the anesthesiologist began to do my epidural. After the meds I really don't remember much besides being wheeled to the operating room. I was completely calm.
I woke up in recovery, epidural lasting so not much pain, although they had me on a morphine pain pump and the epidural pump of lidocaine. The surgery lasted 10 long hours. I remember looking down though and seeing the bandages on my stomach. The 3 drains hanging from all sides and all the wires and cords hooked up to me. It wasn't long in recovery til I got to get back in my room.
They tell you from the start that you have to do three things to go home... eat, have a BM, and be on oral pain meds. And believe me they start pumping you full of colace and miralax as soon as you're out of surgery. I was doing good with 1 and 2 out of the list but pain was an issue when they switched the pain pumps to as needed IV meds.
I remember laying in the bed crying in pain. I can't lie, it was painful. I had an incision from just below my chest around my belly button down to pubic bone.
But honestly as soon as we got the pain under control I was ok. I actually went home 4 days after my surgery.
And seriously the ride home was torture! Every bump or crack in the road, I felt 10 times worse. I was drained and weak. I was ready to be home.

To be continued. ..


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  2. You are so strong. Keep it up! <3

  3. Wow- home after 4 days is amazing. Did you have an IP or Illeul conduit? I was in for 7-10 days I think.....Hard surgery to recover from.