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.