Deeper into hell

Not even a week into my recovery home from the hospital, to be exact it was 2 days... 2 days... and I find out that my incision is soaking through the bandages with discharge like crazy. The real issue was when I took the bandage off and it was just bright red blood. I immediately call the office and get an appointment to come in.

This is when the fun just begins... a small area of my incision right beside my belly button was trying to open and was pouring out discharge and pus. So in office my Dr had to reopen this small area. The nurse showed us how to pack this small hole with guaze twice a day.

I was also started on an antibiotic as well since the incision had become infected. We thought that was all the problem and it was solved now and the rest would be easy sailing.

Two days later as I'm taking a shower and using every last ounce of energy I had, I broke down. Looking down seeing my body in the state that it is in. Feeling how horrible I felt. Knowing this was not how it was supposed to be. I cried. And I cried. I hurt, every spot hurt. My incision was draining massively, the antibiotic made me sick. It was horrible.

So after some crying I texted my Dr. I told him what was going on and he agreed to see me the next day in office and would change my antibiotic.  All I had to do was make it through one more day.

I honestly had no idea what to expect. I knew he would have to open up my incision more but the way I felt I figured I would be in the hospital to do so. But no, let's just say I am glad that my Dr has good taste in picking out his residents cause anyone else couldn't have convinced me it was ok.

But here is this resident re opening my incision as I lay on the office bed. It was horrible.  It was painful, I about passed out twice. They had to lay the bed back and take my vitals and give me a break cause it was just horrible. Really there is no other way to describe it but horrible. I laid there while feeling him pull apart my skin, then pack it with guaze and cover it up. I left with a 12 inch long open incision on my belly. It felt like my insides were going to fall out.

I saw my Dr again a couple days later and he was definitely happy with his residents work on my belly. Although he was ultimately unhappy it happened to begin with. He said only 25% of the time do people get infections. I was just lucky I guess. He wanted my incision to be pretty and heal nicely so he had closed it with internal sutures and then glue on the outside. He said he could have used staples, and this wouldn't have happened but the incision wouldn't have been as pretty. I guess now it doesn't matter because it is definitely not pretty at this point. But he reassured me once it is healed he will fix it.
He also ordered home nursing to come out and evaluate my wound for a wound vac which would aide and speed up the healing process. So I spent the next week waiting on the home health nurse company to come see me. They finally showed up, went through all my intake questions, talked to me about a wound vac and supposedly placed an order for one. I say "supposedly" because after several calls and finally a letter in hand given to the nurse, I never saw the wound vac.

Luckily my mom came over twice a day to repack my incision, help me shower and take care of my kids and all the other daily activities. I still felt like my insides were falling out. It hurt to move, it hurt to walk, I slept on the couch cause I couldn't lay down. I had my drain tube still in which drained my kidneys and new bladder. I honestly felt like I had made the worst decision of my life and I knew it wasn't supposed to be like this. I broke down and cried too many times to count. It wasn't supposed to be this way.

That's all I could fatham. It wasn't supposed to be like this. I was supposed to be halfway through recovery. Feeling good, using my new bladder. Enjoying Christmas with my family. But I wasnt. I was confined to the couch in my living room. Only getting up to empty my drain bag. I had no energy, no will, no want to do anything else.

I was very depressed although I tried not to show it to my kids. But I missed them. I missed everything.

To be continued...

 

 

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. ..

 

12 days...

It is down to 12 days before my surgery... luckily lately I have been extremely busy trying to get all my Christmas shopping, thanksgiving shopping and cooking done, schoolwork and all holiday related activities done; so I have had very little time to sit and think about the surgery.
I know if I do, I get a flood of emotions and worries over everything. I don't tell many people how I actually feel about the surgery, how extremely terrifying this all is. The thoughts of recovery and hopes that it will all go as planned.
The chances of setbacks and ending back up in the hospital are high. The surgery is very complex and so many things could go wrong.
I don't even know where to begin on explaining to my children about the surgery or that Mommy will be gone for 2 weeks. I am their main source of dependency, and the calm in their busy lives.
This is going to be hard on all of us, and I hate that the surgery will be done 45 minutes from my house and kids. And in the same hospital where I spent so many endless days and nights with Zach when he was so sick. So many memories are in those hospital walls and engrained in my mind surrounding those couple of years.

Can't back out now, I am so within reach of this pain free better life with no IC.
12 days...
12 days...
12 days...
I can do it.

I am IC

I am the poster child to Interstitial Cystitis...
I was diagnosed in March with a 400 ml bladder postmarked by all the typical IC inflammation. (For perspective a normal persons bladder is usually 1200-1500 ml)

My everyday consists of pain, painful bladder that feels like a constant throbbing with knife like sharp pains along with severe lower back and having to pee every 30 minutes to an hour to help relieve some pain only to bring a different type of spasming pain. My bladder lining is gone and so therefore all urine that goes into my bladder basically is like pouring acid on an open wound. The food I eat affects it, drinks affect it and stress.... stress is a HUGE factor but how do you not be stressed when you're in so much pain.

Since March I have tried every medication and treatment out there to help control it, even ones that put my health at more risk. I've been immune suppressing medications, participated in painful clinical trials and had more allergic reactions to medications just with the hopes that one would help. The bottom line is that it has gotten to a severe state fast and at this point, there is no treatment or medicine that will make a difference. 
The only thing that will take away the pain is having my bladder removed. To make it all worse, I am allergic to all narcotics so I get ZERO relief from pain....EVER! So I've made the decision to have my bladder removed.

This isn't an easy decision, so please don't tell me it's not a big deal or act like my pain is minimal. IC pain is comparable to END STAGE RENAL FAILURE PAIN AND END STAGE CANCER PAIN. So it is a big deal. And not being able to take pain relief medications is torture.

In one hand I am so utterly happy that I have this option. I have a day that will result in a better pain-free IC free life.
But in the other hand, I am scared shitless. This is a complex surgery that will leave it's mark. Not only do I endure the 6-10 hour, the 2 weeks inpatient and up to 6 month recovery time to get to my life. But I also deal with the self image and emotional toll. I will have my entire bladder removed, and several feet of my intestines will be made into a new bladder.  It's called an Indiana pouch, a fake new bladder that will work better, hold more and cause NO pain.

I know this will be the hardest thing I do to myself. And while it was a decision I jumped at when given the chance, it is a decision that will change everything about me.
I am very lucky to see one of the best IC doctors in the World and I trust him and the decisions he has made for my heath.

He is an amazing and compassionate doctor who actually cares about his patients and their quality of life. Cause let's face it... that's what I'm choosing. I am choosing quality of life over everything else. I want to do the things I used to and want to in my future. 

Some people tell me I have strength and courage to endure and do this, I don't know about that. I am scared and nervous and putting my life in the hands of someone else. Kissing my kids goodbye and saying I love you will be the hardest thing that morning. It's a long surgery, a very complex surgery and it has risks. That scares me the most.

But I'm going to act strong and continue to act like everything is normal for the next two weeks until my surgery date. I have gotten really good at FAKING being normal and strong so this should be no big deal, right?!

Luckily I am very thankful for a small handful of friends who help me through and listen to my struggles and offer encouragement and love. It's a hard thing for most people to understand and deal with, and I get that, but I don't need the ones who don't understand.

So on December 5th, have faith in my Dr and my surgery and the outcome of my new life.