Quite a bit has happened since my last real update. I finished my prednisone taper and am now prednisone-free for the first time in eight months. After 16 years of pills and infusions and more pills, I’m now off all UC medications. I came down with a fever on Christmas Eve, which was miserable, but it passed by Christmas. It remains a bit of a mystery, but I’m pretty sure it was related to mucus retention in the pouch just like the last one. Over the last couple weeks, I’ve also had two more procedures in our never-ending quest to figure out what went wrong after my takedown surgery last time and/or to make sure nothing goes wrong next time.
A few days after my impromptu EUA, I had a pouchogram. I’ve had this test before—it’s a dynamic x-ray using a gastrografin contrast enema to check the J-Pouch for leaks or other irregularities. Other than the fact that my doctor looked lie he was about 15 (I was certain he was an orderly until he introduced myself), everything went fine. The procedure isn’t fun, but as they positioned me various ways and filled me up with the contrast, one of the nurses said, “Wow, you’re really good at this.” So I’ve got that going for me. Which is nice. This was the first time the equipment was positioned so I could see the display, as the contrast made it’s way through my system. It was pretty cool to see it, and my baby doctor took the time to explain what we were looking at (e.g., the staple line) and what he was looking for. Everything checked out. There was no sign of a leak or other issues. (My surgeon noticed a small divot when she reviewed the film, which corresponded to a divot she checked out during the EUA and confirmed was not a leak). According to the radiologist, I’m cleared for a second takedown attempt.
Last week, I had a pouchoscopy (i.e., a colonoscopy for people without a colon). The procedure was basically the same as a colonoscopy, except the doctor used an upper endoscope (which is a better fit for the narrower J-Pouch) and the exam is much shorter (because the J-Pouch is much shorter than a colon). Everything checked out. There was no sign of a leak or other issues, including where the J-Pouch connects to my small intestine (which was the apparent source of the leak in October). According to the gastroenterologist, I’m cleared for a second takedown attempt.
I will see my surgeon some time this month to discuss what’s next, and I expect she too will clear me for surgery. She will likely want to do another EUA either now or at the time of the takedown before we go forward with the takedown attempt, but it will ultimately be up to me if I want to move forward. It’s a tough decision. It was a tough decision the first time, and it’s even tougher now given what happened the first time. I’m feeling healthy for the first time in a long time. Living with an ileostomy is not perfect. I hate it sometimes. But I know what to expect, and I know I can handle it. My few weeks with a J-Pouch were absolutely terrible. It probably wasn’t a fair test, given that things quickly took a turn for the worst, but it’s all I know. But on the other hand, a J-Pouch—if it works—will allow me to live as close to a normal life as possible. But that if is an awfully big if.
2011 was a pretty wild ride. It was at times scary, painful, joyous, uncomfortable, unfair, unclear, insane, really f*cking scary, amazing, sad, depressing, incredible, unbelievable, overwhelming, and fun. Would I do it all over again? Absolutely. Things may not have gone exactly as planned, but the life I was living before surgery was no life at all. Today, I can live my life. I can make plans. I can go to dinner. I can go see a movie. I can go shopping. I can work. I can walk my dogs. I can go on a road trip. And, one week from today, I will be on a plane to Washington, DC, and I’m so incredibly grateful that I know it will be a much, much better experience than last time.