Post-Op/Pre-Op Op Edby Lizz on Tuesday, April 2, 2013 1:16
Guys, it’s been a crazy few months. For a while I was seriously starting to doubt the universe and its plan for me. Things have been “not right” since December, and got noticeably worse by February. Cue MRI, CT, ER visits re: fistula. By March, it was clear I had to move up my exam under anesthesia (EUA) with Dr. Remzi at Cleveland Clinic. Travel arrangements were made and I went up with my mom for pre-op appointments on March 20 and the EUA on March 21. My first appointment on the 20th was a barium vaginal x-ray (complete with barium vaginal goo) to try to locate the fistula. After getting pumped full of this stuff, being on my period and it leaking out all over the x-ray table and on me, I got cleaned up, flipped over, and did the other end. The enema test didn’t clearly reveal a fistula, rather a bulge at the connection/stricture site. The post-enema poo was just…EPIC. I don’t know if my pouch has ever been empty before. OMG. I was relieved but exhausted. I drank about a gallon of fluids to regain clarity and headed for the lab to get blood work. After that, I saw Dr. Remzi’s NP, Vicki, and Dr. Shen sat in on that appointment. We discussed surgical options, non-surgical options, IBD treatment, etc. When I got to the EUA the next day, I was more anxious that I’d let on. I hadn’t been sleeping much since I found out about the fistula-maybe two hours a night. I was also excited to have a great distraction in my new position as Development Director at Girls with Guts (GWG). After getting recently fired, it was a savior to me mentally to have something to do that I was passionate about and also really good at! So, I kept my brain occupied with exciting/positive things for GWG, and tried to be patient with my own health. When I got to Cleveland and heard every physician I saw say how much they “hate” fistulas, I got kinda nervous…
I cried a lot that week. I think I was exhausted and overwhelmed, and it was truly cathartic. When they wheeled me back to the OR, I just thought, “How is this happening to me again? How am I doing this and not completely falling apart?” I prayed, I took deep breaths, I joked around with the nurses and the team of doctors. I made BFF’s with the anesthesiologist all the while wondering when I was going to get my freaking anti anxiety meds!!! They juiced me up right before Dr. Remzi came in. I dunno if it was the drugs, but his voice sounded incredibly deep as I looked up to him with hopeful eyes and he explained what he would do while patting me and saying, “I will take good care of you.” When I woke up, I pestered the nurses and staff for information about what was discovered. Knowing I’d remember only portions of the answers, I requested pen and paper to record all of my inquiries/answers and before I knew it had 5 pages full! Mom and I went back to the hotel, I slept, had dinner, slept some more. I’m happy to report I’ve been sleeping well since the surgery.
So what happened? No one got a visual on that sneaky fistula, which is good? But they still can’t rule it out based on my symptoms of air and off-colored discharge. Dr. Remzi said what I already knew-that my pouch was not properly constructed. Dr. Shen told me this back in 2010 when I first went to see him, but with the help of his “bag of tricks” I was able to postpone a reconstruction for three years. I was the healthiest I’d felt in years. Although I was SURE I was having a flare when this all started up in December/January of this year, the EUA proved otherwise. My IGG4/Crohn’s was in remission, it was my pouch causing all that pain, swelling, and nausea. That really hit home for me and made me realize that I have to get this sucker repaired. That’s not to say I’m looking forward to the two surgeries required to reconstruct it. I’m not. I am not excited to devote a year of my life to surgeries again. I’m not excited to have a year for my pouch to adapt again. I am kind of weirdly excited to have an ostomy again because I can get some fab Vanilla Blush goodies. The thing I’m wrestling with the most is, do I try the J-pouch again? Do I get it fixed, have a temp loop ileo for 6 months, then have takedown? Remzi has an 85% success rate with this surgery, but let’s remember how I’ve been in the 0.6% before…Still, is it worth a shot? The other option is just to scrap the whole thing, get a permanent ostomy, and get rectum and anus removed. I have friends who have opted for this route, but both of them still have some problems. If I could just go back to an ostomy knowing it would fix all of my problems, I’d do it in a heartbeat, but as with all things, there’s no guarantee. I have no problems having an ostomy. When I had the colectemy and the end ileo when I was 22 or so, I had major doubts about proceeding with the rest of the surgeries because my quality of life was so much better. I’m happy with myself; an ostomy doesn’t change that. The only issue with going directly to the permanent ostomy and having rectum, et al removed, is that there’s no going back from that. In an effort to not “burn any bridges” my gut is telling me to try for the reconstruction. Still, I’m tired. I’ll be 30 in less than a week, and that marks 15 years with IBD. It’s been basically non-stop with disease activity/surgeries since diagnosis. Is 85% good enough to put myself through more surgeries?
Again, I don’t have MUCH of a choice. Of course, I always have choices-how to react, which surgery to do, but whether or not do so SOMETHING, isn’t really an option now that I’ve seen how poorly this sucker works. I can’t go on living on pain pills looking 5 months pregnant because I can’t poop. I want to live my life. I want to give myself a chance, and I guess 85% is pretty good.
So, what do you guys think I should do? Try for the reconstruction or say sayonara to this thing once and for all? No guarantees with either, but one option presents one less bridge to burn.
Update: Guys. It’s THREE surgeries. Not two. First is to give me diversion or ”loop” ileostomy. Second is reconstruct pouch. Third is takedown. BLAH! I’m grumpy now.