I do not remember alot about surgery day. I remember intense anxiety, shaking uncontrollably while being wheeled to the operating room. My heart rate was easily over 100 bpm. Someone gave me a sedative to help me calm the hell down. Not sure it worked. I remember my surgeon telling me everything would be ok. I think I believed him. Then what seemed like 2 seconds later, I woke up in recovery feeling like someone was stabbing me in the gut. It was the worst pain I ever felt, worse than childbirth. I was screaming and sobbing hysterically. Jeff (my hero) was there, yelling at people to get me more pain meds. A nurse came over and asked me to rate my pain from 0 to 10. "Eleven!!! Turn on the morphine drip for fuck's sake!" is how I think I replied. Turned out, they had me on a max dose of Fenalyn, which was promptly doubled following my outburst. Pain management is a priority at the Clinic.
Fortunately, the pain subsided to a manageable level so I was finally wheeled up to my room for the next several days. I remember looking at my new stoma. I expected to be completely freaked out over having to poop in a bag for the next several months, but I wasn't. The stoma was not as gross as I had imagined, and the bag was not that unwieldy. The best strategy, I decided, was to become a stoma care taking champ. My stoma nurse said I was the smartest stoma patient in the hospital because I demonstrated competence in changing the appliance after just one lesson. Actually, I think it had more to do with attitude than intelligence. Alot of patients apparently are unsettled by the whole stoma situation, so avoid dealing with it. As a result, they have more problems taking care of it. To anyone who has to face this, my advice is to embrace it. Learn everything you can about how your stoma works and how to care for it. Your life will be much, much easier:
http://www.ostomy.org/ostomy_info/
http://my.clevelandclinic.org/Documents/Digestive_Disease/HavingIleostomy.pdf
In the hospital the doctors and nurses wanted to get me on my feet as soon as possible and walk. It was excruciating at first, but I did feel much better after each walk, so set goals to increase my distance each time. Eating solid food without incident and stoma care competence summed up the discharge criteria this time around. Fortunately, I had no problems with either, so went home within the week. Returning home (Feb 20-something) was amazing! I was exhausted, but elated not to be so sick anymore! Recovery from the end of February to May was up and down. I had good days and bad days. Mostly, I was exhausted and napped alot. I was determined to heal, however, so walked everyday.
In May, I started to feel sick again and was experiencing several episodes per day of cramping with bloody discharge coming out of my bum. The surgeon's office referred me to a gastroenterologist, who diagnosed me with 'diversion proctitis.' This basically means that the ulcerative colitis was flaring up in the rectal stump (proctitis is ulcerative colitis occuring in the rectum only) My surgeon left behind as a placeholder until the second surgery would replace it with the J-Pouch. He prescribed some steroid foam, which helped to calm it down somewhat. However, on May 19th, I experienced excruciating stomach pains and was yet again rushed to the hospital.
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