On May 1, 2015, my colon exploded. Literally blew the hell up in my surgeon's hands.
I had been terribly ill for months. My gut was sick, and the needs of Dear Husband, who requires constant supervision and care, were exhausting me. I ate well but grew weaker and weaker. I dropped all my community involvement, one organization at a time. The last thing to go was writing this blog.
The gut pain became so great that I thought I had yet another kidney stone. My PCP sent me to a urologist (an urologist???). He ordered an MRI and then went out of town. His surgeon colleague read the MRI and sent word that I needed surgery for diverticulitis.
I asked my PCP's office for a referral to the surgeon. The nurse told me that I didn't need surgery, that my diverticulitis could be cured by antibiotics, so she had my PCP order yet another round. I asked why the surgeon would say I needed surgery if I didn't. She said, "That's what surgeons do."
I finished the antibiotics. And I got sicker.
I went to the local urgent care clinic because it was a Friday and my PCP is gone on Friday. All the toilets at the clinic were filled up, shaken together, and running over down the hallways, which was causing great consternation to the nursing staff. A nurse stood at the door and turned patients away. She told me to go to the ER. After six hours in the ER and another MRI, the doctor sent me home with more antibiotics.
Ten days later, still desperately ill, I went back to my PCP on a Wednesday. He wasn't in. The office sent me to the ER. The ER MRI'ed me and offered to admit me to the hospital. I asked the ER doctor whether he would be admitted if he were I. He said, "No," so I declined.
The next day, the hospital's gastroenterologist reviewed my MRI. Her office called and told me to go to the ER and be admitted to the hospital. I needed IV antibiotics for raging antibiotic-resistant diverticulitis.
I spent six days on multiple types of antibiotics, even having an infectious disease specialist become one of my consults because of the intransigence of my infection. The problem was exacerbated by the fact that I am severely allergic to penicillin and Keflex. I developed a localized allergic reaction to Levaquin while I was there. Watching my veins turn red as the Levaquin worked its way up my forearm was both fascinating and frightening. The nurse shot me full of Benedryl and we watched the arm turn white again. Continued the Levaquin paired with Benedryl. And continued trying a bunch of other antibiotics that I can't remember the names of.
After six days, I went home weak, but better. The gastroenterologist and the surgeon said my sigmoid colon needed to be removed, but I needed to get my gut calmed down before surgery. The plan was to do surgery in three to six months; six was ideal. A quarter of the people who have colon surgery during a severe diverticulitis attack die during their hospitalization. You don't want to operate on a sick colon, but a healthy one. Ideally, one that's been healthy for six months.
Two days after I returned home, I fell down the stairs and broke my ankle.
Back to the ER, this time in an ambulance because my husband can't drive.
Two weeks later on a Sunday, my gut was so sick that I knew I was in trouble. I wasn't supposed to have surgery for a minimum of three months of uninfected colon, so I went back to the ER. More oral antibiotics. Back home. Weak and visibly losing my life force. Pretty sure I was dying. Which I was.
The surgeon's office called me the next day and said we were moving the surgery up. The date was set for three days later, even with the risks of a raging infection. I picked up the drugs to clean out my colon, and when I started on them I became so ill that I knew I was in trouble. I started to cry and called the surgeon's nurse. After calls back and forth, she said, "Go admit yourself through the ER. We will have the papers ready when you get there."
Fifth trip to the ER. By ambulance. I was too sick to drive, and Dear Husband can't. Admission, IV antibiotics.
Next morning, surgery. Supposed to be one hour.
The surgeon removed my sigmoid colon and attached my descending colon to my rectum. He inflated it to ensure that it had no leaks.
That's when my descending colon exploded.
Blew the hell up.
Surgeon said he'd never experienced anything like it in his 22 years as a surgeon. Never even heard of it happening. He said, "I had one minute to decide what to do. I could either give you a colostomy bag that I might never be able to reverse, or I could take out your entire colon and attach your small intestine to your rectum. That's what I would have wanted if I had been lying on the table, so that's what I did."
I asked this unemotional man later what he felt at The Moment. He said, "They teach you in school that surgery is 99% boring procedure and 1% sheer terror. That moment was terror."
Then, unemotional again, he sliced open my belly right under my rib cage to match the slice he'd initially made right above my pubic bone. First he peritoneal lavaged me. Then he surgically disemboweled me. Literally dis-em-boweled me.
Everything in my abdomen was stuck to everything else from the years of infection in my gut, as well as from my previous surgeries and recurrent UTIs from kidney stones. In places where my colon should have been two inches in diameter, it was five due to the current infection and previous scarring. The surgeon had to meticulously detach the hideous, seething colon from my other abdominal structures, and a one hour surgery became five. The hospital had to cancel the rest of his day's surgeries.
I was in the hospital for eleven days, much of which I can't remember because I was so close to death. Part of the problem was that I was acutely malnourished since my body hadn't been able to absorb any protein for God knows how long. I received multiple pure-protein IV drips, and as I understand it, four packed-red-blood-cell transfusions, which is the equivalent of eight regular red-blood-cell transfusions.
My surgeon wanted me to go straight downstairs into in-hospital rehab for three weeks because I was so ill. He said, "You're not strong enough to go home. We need to build your body back up. You can't take care of yourself, much less your husband."
I will not go into all the details about why I had to go home instead of in-hospital rehab, but suffice it to say that the journey has been long and difficult. The gastroenterologist said it would take a year for me to be well again. She's right.
I've learned to live with diarrhea eight to ten times a day, but at least I have no pain with it. I will never have colon cancer. I will never have another attack of diverticulitis. I will never have to have another goddam colonoscopy. I can eat popcorn, tomato seeds, and strawberries. And no one can EVER tell me, "You're full of shit," because I can provide medical documentation that I am not.
So I here I am, such as I am. A significant portion of my brain is gone from my golf-ball sized meningioma; the hangy-down-thing in the back of my throat is gone because it was 250% too large and choking me; my adenoids and tonsils are gone from chronic infection; my uterus and cervix are gone from endometriosis; my gall bladder is gone from a near rupture; the appendix went as a freebie with the gall bladder; a third of my rectum is gone from maceration and was rebuilt from colon tissue twenty years ago when I still had a colon; and now my colon is gone. As my junior-high-band-director dad says, imitating the Palace Guard skit from the old Carol Burnett Show, "She's HALLOW!"
So that's where I've been since my last blog post. Spending hours a day having diarrhea. Going to doctors. Coming to understand the finer points of toilet paper and baby wipes. Developing an appreciation for Boudreaux's Butt Paste on my poor, sore bottom.
I'm not well yet. I have another five months before my recovery year is up. But I'm back writing again, and I'm starting to play my clarinet with my band friends again. So I'm healing. And that's a good thing.