Good to go

Yesterday I went to UCSF for two pre-operation appointments, one with my surgeon, Dr. Varma, and one for an x-ray. Dr. Varma answered my questions, like how long recovery would be from the second surgery and what it would be like, as well as the risk of complications. This time my recovery should be shorter, so I will probably be in the hospital for five days, but it really just depends on how well I feel once I start eating food again because everyone is different. Complications can always happen, and the worst possible case would be incurable pouchitis. About 30% of patients get "pouchitis," which is inflammation of the pouch, sometime in their lives after the second surgery. The symptoms are similar to ulcerative colitis but with less pain. Most of those patients respond to antibiotics and pouchitis does not return, but a small percentage of patients do not respond to antibiotics, develop chronic pouchitis, have their pouch removed and live with the bag for the rest of their lives. That would be pretty unfortunate, but still better than living with ulcerative colitis. At this point I have adjusted to the bag, although I will admit that I can't wait for it to be gone. Taking probiotics like VSL#3, which is a packet of billions of bacteria that you pour into a glass of water (I took VSL#3 for a couple weeks in the spring as a last ditch effort), might help prevent pouchitis. Dr. Varma reminded me not to think about what-ifs and just focus on the next couple months for now.

My second appointment was one of my favorite appointments ever. They did an x-ray with dye contrast of my intestines to make sure that there were no leaks in my pouch and surgery could proceed. Remember, the whole point of waiting two months to reconnect my digestive tract is to let the pouch heal and thereby prevent leaks to my body cavity and some pretty serious complications like blood poisoning. The actual x-ray experience wasn't particularly fantastic...you don't want to know the details, trust me...but then I got to see the x-ray! I could see my pouch because it was darkened from the dye, the hole of my ileostomy and the end of my upper intestine. It looked just like the diagrams from the doctor's office! I was surprised by how narrow my upper intestine looked and I could see why it would be painful to eat anything and get it through that narrow space. Unfortunately I forgot my camera so I couldn't take a picture of the x-ray. I was also just amazed that doctors were actually able to rearrange my plumbing so...artistically and successfully. 

I am now taking only 5 mg of prednisone per day and I am definitely feeling the effects. I am having more painful cramps and I am not absorbing food as well. I can tell because I can drink four cups of water in a row and not have to go to the bathroom. Not a good sign! The cramps are noisy and they sound like a stream gurgling. I can feel them start midway through my upper intestine and snake down to my ileostomy so I've figured out exactly where the bends are. It's pretty awkward when those noises interrupt a conversation. This process of recovery can be a little discouraging because I've had some days back in bed, which I thought I had left behind, but it makes me glad that I don't have any obligations and I have a summer to spend in bed. 

My days are now spent reading, seeing friends, talking to friends, writing to friends, spending time with my parents and my sister, making my room messy, cleaning my messy room, bothering Kitty, trying to eat as much as possible and trying not to forget how much better life has become. Although the first couple weeks out of surgery were horrendous, they were also magical because no matter how bad I felt (minus the time spent back in the hospital), I still felt better than I had before surgery. I was overjoyed to sit outside, to eat tomato sauce, to wake up in the morning and go somewhere without waiting hours for pain to subside and to see a friend without wishing I was just alone. It's amazing how quickly we adapt, both to challenging and improved circumstances. I slid into a quality of life that wasn't acceptable by any means and have since come to take for granted all the luxuries I had wished for not so long ago. I used to dream about cranberry juice. Now it's not such a big deal, although don't get me wrong - a glass of cranberry juice is undoubtedly special. Pretty soon I'll just be a normal person, both without the unusual pleasure taken from random foods and the freshly painful experiences that came to define me. 

One of my main activities