I decided to write this even though I feel I am still unable to express myself in the clearest of possible terms.
I wish I could say things are coming along fantastically; that progress is happening in leaps and bounds like it was after my planned surgery, but I cannot.
Much has happened since my last update, and I don’t have all the dates exact, but will do my best to lay out a timeline to explain what has transpired since I last posted.
Monday, June 3 had me sent for an MRI, my abdomen swollen and full-term pregnancy like, followed by an ultrasound with exploratory needles inserted in hopes of reaching/draining possible pockets of fluid around the intestine.
Thursday, June 6 the surgeon scoped the small bowel, and discovered a pinched off segment; unfortunately, the scope also perforated the bowel and toxins filled my body cavity.
I remember coming back from the scope in so much agony – pain worse than any post-op I’ve experienced. For the first time, I lost all control: I’d finally reached my breaking point. I was screaming hysterically, begging for someone to just let me – or help me – commit suicide. This pain was too much, and *nothing* would stop it.
I was rushed for a CT which confirmed the perforation, then crashed. The surgeon performed emergency surgery sometime between June 6 and 7, where it was discovered that a segment of bowel had twisted, wrapping itself behind the stoma, resulting in ischemia (bowel death), which led to obstruction, and was the source of the pain described here.
If the first surgical recovery seemed like a breeze, this one is promising to be anything but.
The MRI and CT in such close proximity – both requiring an intense injection of contrast – sent my kidneys into renal failure. They just couldn’t keep up. Fluid caused my legs and ankles to balloon into grotesque, morbid casts of their former selves.
Round-the-clock cocktail of IV antibiotics to kill the toxins coursing though my body. Hooked up to an oxygen tank because I simply cannot breathe; cannot get enough oxygen into my blood on my own.
There are many days I do not remember from this point (June 10th-ish) on. To be honest, I am not certain I was entirely conscious for many of them. But after a few blood transfusions I finally started to rebound. It was June 25 – or somewhere around that date – that my memory beings to serve me once again.
My blood work started to look up, the edema in my legs disappeared, I was off oxygen. The drains inserted in the body cavity were pulled. They cut the IV feeding and had me start to eat again (with a nicely functioning bowel).
All of this is wonderful, of course. But being so acutely ill for so long has taken its toll.
Every step taken feels like a marathon run. The body I’d worked so hard to achieve, the elite level of fitness I’d gained back after years of intestinal illness, once again gone. (This is a challenge I look forward to, once rehabbing and recovering at home again. Of anything *this* where I know I’ll get back to complete normalcy. Because it’s what I do. I will get back to where I was. I’ve fought back from the skin-and-bones point before, I can do it again. Though not emaciated like I was before the GI rehab program, I’ve still lost far too much body mass.)
The constant high doses – then complete withdrawal – of multiple narcotics (and other things) has me in a state of what feels like perpetual limbo, like I’m existing somewhere between reality and, well, I don’t know. But I feel so disconnected and foggy; I can’t see clearly. Everything echoes through my head.
I went home on a 4-hour pass just yesterday and it was a disaster.
I don’t know when things will start to feel normal again. I don’t know how long this recovery will be. I’m doing everything I’m supposed to be doing to help the body heal, but I am terrified it won’t be enough. I think this is the first time through everything that I’ve honestly questioned my ability to recover. And it horrifies and scares the hell out of me to say it, but it’s what I worry about.
And it’s what keeps me up at night — I’m afraid to go to sleep because I’m so afraid of not waking up.
And I am so sorry to end this post here, but I have nothing more to write.