My surgeon’s office just called. If everything checks out during my pouchogram on Monday (9/26), I will be having my takedown surgery on Tuesday, September 27. Almost exactly three months after my proctocolectomy and ileoanal anastamosis. I usually try not to get ahead of myself, because there are no guarantees. Anything can happen between now and Monday. My pouchogram could reveal a leak. Etc. Etc. But, Tuesday. One week from now. That’s soon.
When my doctor called with the date, my initial reaction was to push it back. I can’t possibly get everything squared away at work by then. It’s too soon. But I quickly realized it’s not work I’m worried about. I’m scared of change. After months of struggle, I’m finally comfortable physically. I’ve finally got my ileostomy figured out. Last weekend, I went to Tahoe for the weekend with some good friends. I didn’t stop to use a bathroom for the entire 4+ hour drive. I went on an 8-mile hike. I went out to dinner and breakfast. I ate what I wanted. I had no problems. Zero. Not one. And now I’m being asked to give that all up and start again.
When I was researching about this surgery, I remember reading about people who contemplated keeping the ileostomy and foregoing the takedown surgery, because the ileostomy “just worked”. During my first couple months of life with the bag, I thought these people were crazy. There is no possible way I could live with this for the rest of my life. But now, I get it. It’s not perfect, but it’s known. And it’s manageable. The post-takedown J-Pouch is completely unknown. And it’s scary. What if I get pouchitis? What if I’m never able to reduce the frequency of my bowel movements? What if I can’t control the pouch at all? What if I can’t eat anything good? What if I get unbearable “butt burn”? What if…?
There aren’t any answers to these questions. All I can do is keep moving forward, and I know that I’m on the right path. But for now, I’m scared.