I’ve been gone a long time. I’m sorry, mostly because this is just another thing that UC stole from me. But, I endeavor to get it back. The last post I started writing was mid-February. So much has happened since and I have every intention to make what I learned useful to others.
For now, an update: on April 21, 2015 (my 27th birthday) I had my colon removed! It was one hospitalization after the other before that. For 7 months, even after the c. diff infection cleared, I was in the hospital with the exception of a few days (if lucky) in between week long admissions. Doctors were painfully difficult (that’s for another time) and in April it became clear to me that I want nothing more to do with this kind of lifestyle. I asked my GI for a surgery consult, inpatient. My GI wanted to be thorough. He had a talk with my surgeon and an IBD expert and they decided that the best route was to confirm, visually, the progress of my disease. They schedule a scope for the next day to see if the Remicade infusions have helped.
I spent that night in excruciating pain, vomiting without end. Even though I was receiving pain medication, it wasn’t touching my pain at all and no doctor cared to fix that. It was a relief to have a scope because the anesthesiologist dosed me up with Fentanyl until I felt no more pain and then put me to sleep. I woke up in my hospital bed with my mother by my side. She told me that the doctors said there was absolutely no improvement and I knew that this was the best thing I could hear. It meant that surgery will be approved and at this point, I was praying for surgery.
I met my surgeon and his team the next day. They were all very kind and wonderful people. When the surgeon told me that I will be having surgery in 2 days, I welled up in tears of joy. My husband came to visit me that day and he found me walking in the hallways for the first time in days (my surgeon advised as much walking as possible before surgery). I cried when I told him about the surgery because I knew that it would change my life. I just wanted to go home and stay there.
Surgery was a huge success (I’ll discuss the details in another post so that people know what to expect if they are expecting to have a colectomy). I’ve been home for over a month. Not only have I been home, I’ve been feeling great. I’m finally tapering off of all my pain medication. I have gone out several times. I can travel to visit my family again. I can eat. I have energy. Things are slowly turning around. I’m slowly getting my life back.
It’s not easy to bounce back from 4 years of debilitating disease and 7 or 8 months of hospitalizations. It’s emotionally straining, on me and everyone who cares about me. It’s hard to get back into things, even relationships take a toll that isn’t immediately reversible. But – I couldn’t have asked for anything better. My body is recovering well and my heart will catch up. I kept a smile on through these 8 months. There were many moments of fear and uncertainty. But, I was able to find a reason to smile each day. If I can make it out of that, I can definitely recover from it.
I’m not completely free yet, but by the end of 2015 I will finally be part of an elite group of people called “the J-Pouchers” and I will be UC free.