My Second Surgery...
Hi everyone! Welcome to week eleven. So a quick recap…
I was diagnosed with Stage III Rectal Cancer on June 6, 2019. I had seven cycles of chemo from July to October, radiation in November, and I had my rectum removed and a temporary poop bag installed on January 31, 2020. Now, the plan was to have it reversed about 8 weeks after the surgery, but as you learned last week, I experienced gobs and gobs of issues that prevented it from even being a consideration, regardless of Covid.
So FINALLY I was scheduled for my long-awaited ileostomy reversal on August 10, 2020. And I was stoked. I felt like this is what I had been waiting for and that I had it in the bag (no pun). I kept being told that often people feel “chained to the bathroom” after an ileostomy reversal because the poop pipes are all crazy, but I know how to heal myself, so I wasn’t concerned. AT ALL. In fact, as I reflect back on it, I was downright cocky. I thought, “ha, they think that this is going to hold me back??? I’ll show them!” But what happened is that my body showed me.
The surgery itself was easy. The first time I pooped with my newly connected poop pipes was not. I woke up from a nap with a sudden, and I mean sudden and urgent urge to poop. I was hooked up to an IV, plus I had just had surgery, so I was slow moving. By the time I got up out of bed to head to the bathroom, it was too late. So, I just stood there, beside my bed and pooped all over myself, all over the floor. It was humiliating. I shuffled to the bathroom, sort of still pooping as I went, leaving a nice trail behind me, sat down on the toilet, and pulled the cord for help.
The CNA came in and asked if I was ok. I don’t even think I could look her in the eye when I said that I had pooped all over the place. She was of course super kind about the whole thing and reminded me that there was nothing to be embarrassed about. I always wonder when people say this. I mean, had SHE pooped all over herself and the floor as an adult? Because unless she had, she really had no clue as to how it felt. And to be honest, humiliating is pretty much an understatement. It was mortifying and shameful and undignified and made me feel so, so helpless. But, I cleaned myself off and kept things moving right along. Because, I mean, what else was I going to do.
I believe it was later that day that one of the surgery docs came in to check on me. Now, I’ve had this guy a gazillion times and he is, well, an asshole. His bedside manner is horrible, and he walks around like he is the smartest person in the room, wherever he goes. He asked if he could see my belly, which I of course showed him. And then he just started pulling gauze out of my old stoma hole! It was like one of the magic clown cars! The gauze just kept coming and coming and coming and I sat there saying, “Oh my god, Oh my god! Oh my god!” And then he stopped and said that this is a normal part of the recovery process. I thought, “huh, maybe for YOU since you do this all the time, but not so much for ME!”
Ok, so this hospital stay was pretty short…only three days. And then I got sent home, on my merry way. I was told that my body would “adjust” to using my poop pipes again but that it might take some time and that I might experience some “urgency” before having a bowel movement.
So, this urgency that they spoke of is a gross understatement. Because when I got the urge to poop, it was almost too late. I literally had to be 20 feet from a bathroom at all times. I couldn’t distinguish feelings back there, so sometimes passing gas felt like I was going to poop and visa versa. I had to wear pads in my underpants so that if I had an accident, I would at least be somewhat prepared. And often when I DID have an accident, I had no idea until I actually went to the bathroom. This went on for MONTHS. I kept thinking that I would figure this whole thing out and I’d be able to train myself when and how to poop again, but with every passing day, I lost a little more hope and confidence.
I even had to have a second trigger point injection into my vaginal wall. I was petrified I’d poop on the table. To be honest, I was petrified I’d poop pretty much any time I went anywhere. And if I did have to go somewhere, I would take a bunch of antidiarrheals and put extra pads in my undies, because I honestly just never, ever, ever knew what would happen. I had literally become a hostage to the toilet. But because of Covid, there really weren’t many places I was going anyway, so it sort of hid the problem for quite some time.
I did my best to try to figure out what foods would trigger it, but honestly, I felt like garbage when I ate any solid food. I was on liquids for about three weeks after surgery and the reintroduction of food did not go well. In fact, it went so poorly that I was back in the hospital in mid-November with my first of many small bowel obstructions. But we will save that story for next time.
Thank you for coming by to hear my story. I hope that this will serve as a reminder to get your colonoscopies done asap. And please remember, that you, yes YOU can mine your light, regardless of your circumstances. You deserve this.