Yesterday morning, I sat in the passenger seat as my dad drove me to Mount Sinai Hospital for my pouchogram and subsequent appointment with my surgeon. On the Gardiner Expressway, I watched people in Mercedes coupes and Land Rover SUVs patiently navigate the eastbound gridlock. I figured they were on their way to their important, fulfilling, high-paying jobs. On Spadina Ave., I watched people shrouded in Canada Goose down jackets and clutching Starbucks coffees walk briskly on sidewalks dusted with fresh snow. I figured they were on their way to their important, fulfilling, high-paying jobs, which are located within walking distance of their luxuriously designed condos. They all woke up that morning and thought about what tasks they had to accomplish and how long it would take to get to work. I woke up that morning knowing that in a few hours I’d have a tube shoved up my ass. I woke up wondering whether my first brutal surgery would need another brutal surgery in order to fix all the excess brutality from the first surgery.
Some people just get fucked over, I guess.
I had my pouchogram at 10:30 a.m. Two doctors slid a tube into my anus and pumped contrast fluid into my pelvic pouch. Then I rolled around on a narrow table and a Toshiba x-ray machine took pictures. I don’t know why, but I kept on looking at the Toshiba logo on the machine as it rose and fell and swiveled around taking photographs of my bowels. After my photo shoot, I went to the bathroom and pushed the liquid out of my pouch. One of the doctors said my pouch looked good, and he handed me a note to take to my surgeon:
“No leak seen. 50% post evac residue. Stenosis ileo-anal anastomosis.”
As I waited for my appointment with my surgeon, I Googled “stenosis” on my phone:
“A stenosis (from Ancient Greek στένωσις, “narrowing”) is an abnormal narrowing in a blood vessel or other tubular organ or structure.”
So even though the connection between my pouch and my anus healed, it healed to the point where it’s too narrow. Fabulous.
My surgeon was generally pleased with the results. The biggest issue – the gap between my pouch and my anus – had been resolved, and that meant I wouldn’t need the first surgery redone. Welcome news, yes. However, the stenosis meant that he couldn’t give the all-clear to have my ostomy reversed. The narrow channel between my pouch and anus could make it difficult to empty my pouch completely, which would mean more trips to the bathroom everyday.
So, before I can get my terrible ostomy reversed, I’ll have an examination under anesthetic (EUA), at which time my surgeon can get a better look at the pouch and the ileo-anal anastomosis, and possibly do something to widen the channel a bit. Two days after that EUA, I’ll have another pouchogram, and if that looks good, I’ll get the ostomy reversal.
Now, here’s the “ish” in “good-ish” news. Because my surgeon is going away for the holidays, and because he’s booked solid as usual, the earliest I can have the EUA is January 21, and the earliest I can have the ostomy reversal is February 11. That may not seem too far off, but when you’re living with excruciating pain on a daily basis, it feels a geological era away. It also means more months spent not living the life I want.
If you’ve never lived with chronic pain, you’ll never understand just how distraught I was with the scheduling. Waiting is really hard when you’re in pain. On the walk to my dad’s CR-V and on the drive home, I felt defeated. Two more months? Two more goddamn months of this bullshit? Fuck it. Fuck this body and fuck this disease and fuck all people milling about downtown who don’t have to deal with anything this bad. Fuck everything.
This morning I changed my ostomy appliance, another painful and difficult and disgusting process that I’ll still have to live with for at least another two months. I tried a different setup of the appliance that I hope will alleviate some of the pain. I had breakfast and I did some of my freelance work and watched some Champions League football and ate lunch and now I’m writing this post. I’ve calmed down a bit from yesterday. I’m not as depressed as I was yesterday. But I’m still upset. I’m tired of waiting for things to get better. I’m tired of my life being in one giant pause. I want a Mercedes and a Canada Goose jacket and a Starbucks beverage on my way to work. I want to go to sleep feeling comfortable and wake up knowing that I have things to do, not pain to endure.
Sigh. Two more months, eh?