It's currently about three and a half weeks post-surgery. Hard to believe it's been so long. My plan is to use this post to update you about my surgery and recovery, but unlike so many of the ostomy blogs I read, I really don't remember all that much. Maybe I was more medicated than some of you! Anyway, hopefully this fills you in on what's going on with me and my new "companion."
Since I don't remember everything that happened in order (and quite frankly don't want to write about everything I do remember), I'm going to list the most important things I'd like to share.
1. Yes, I was in the hospital over Christmas. A lot of people were horrified by this! It wasn't that bad. Santa and carolers came to visit my wing and gave me a beautiful poinsettia. I also had a visit from a wonderful IBD friend that day. (Although the failed catheterization attempt later in the day was one of the most physically and emotionally painful experiences of my life, but hey, who said IBD was all kittens and roses...)
2. The "prep" for this surgery confirmed for me that I made the right choice. I have heard that not everyone undergoes the same prep for a proctocolectomy, but mine made me want to die. Seriously. I had to take 12 pills (two different antibiotics) and drink a TON of Gatorade/Miralax. It was like colonoscopy prep times a million. Yes, I puked. I spent a lot of time on the bathroom floor. And I realized that I will never have to prep for a colon-related procedure again, which was the one thing that kept me from jumping from the hotel window and taking out a random Philadelphian.
3. No matter how ready you think you are for surgery, at some point during recovery you're going to lose it. My first meltdown came in the hospital after the horrible catheterization incident (aren't you just dying to hear the full story?) I was so upset the nurses ended up giving me Ativan to calm me down. The meltdown subsided temporarily, but started up again later when I started bleeding in a very special place. Bleeding and passing some sort of tissue, mind you. It was terrifying. Apparently something may have been bumped or knocked around during surgery, the medical staff said, which really helped my mindset. Oh, and a night or two later when my bag leaked twice during the night, I definitely panicked.
4. You may have some unusual side effects that you weren't warned about. I guess the random tissue passing could fall under this one as well, but speaking of tissues... My body stopped being able to sneeze for about three weeks post-surgery. Seriously. Every time I would start to sneeze, my body would internalize it, as if it was sucking the sneeze in. I don't know if it was my body's way of trying to protect itself from any further pain, but it sure was interesting.
5. Your biopsy report will likely be very, very interesting. As my surgeon told me before the procedure, there are some things you really can't see until you're "in there"... or until the offending parts are out of your body and being studied carefully. Prior to my surgery, my diagnosis had floated between ulcerative colitis and indeterminate colitis. This is thanks mainly to my charming rectum, which decided to not be involved at first (even though I technically had pancolitis) and then became my worst part. The fact that my rectum was so bad was one of several reasons why I decided not to try a Jpouch, which I may discuss more in a future post. But my biopsy showed that due to some unexpected factors, a Jpouch very well could have been problematic for me. It also showed that my appendix was affected as well-- who knew!? I did turn out to have UC, but it turned out my particular case was a little unusual.
6. Ostomy nurses will become your best friends. Although I was helped by a lot of wonderful nurses during and after my hospital stay, there was no one more helpful than my surgery clinic's ostomy nurse. I had a ton of problems with leakage and skin irritation right after surgery. She helped me in the hospital, via email while I was at home, and during an office appointment last week. I'm now trying a new system and haven't leaked at all in the past few days (fingers crossed...)
7. Your house will start to look like a medical supply store. Not only do I have the supplies I left the hospital with, I have my first order of supplies (which came in a massive box) and two starter kits from various companies. Eventually this will settle down, but right now I'm still seeing what works and what doesn't.
8. Even while recovering, I feel a million times better than I did prior to surgery. Seriously.
9. Don't be offended if people act like your surgery is a bad thing. While most of the people who know me understand why this surgery was actually necessary and a step in the right direction, most people who don't know much about it will think that having to get an ostomy is a disaster or something that needs to be kept quiet. Don't take it personally.
10. This surgery was the best thing I've ever done in my life. Not necessarily the experience itself, which wasn't anywhere near as fun as, say, a beach vacation or baseball game... but the end result. I'm starting to feel like myself again. Years of struggling with this disease made me feel like I had been replaced with a shell who vaguely resembled me, but I'm back now.
If you have any questions about my surgery experience, feel free to leave me a comment... unless you're asking about the catheter. Give me a few years to deal with that. ;) Sarah
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