In telling the story of my nervous breakdown at age 39, I’ve so far detailed in two separate posts the death of my dog and the breakup of my relationship. There are three more disasters to share with you because there were three more blows coming for me before the major depression reached its most gruesome stage.
Tonight, the third disaster, but a heads-up for next week: I’ll combine the other two into one last post about the wind-up. I want to get to the climax and the denouement and then I want to go back to writing about dryer lint. Those were the good old days.
All right, let’s do this. Let’s talk about my guts.
Some people get colonoscopies. People with colon disease get them a lot, maybe every couple of years. Every two years, I have to get a pouchoscopy because I don’t have a colon. Instead of a colon, I have a medically fashioned thing called a j-pouch, and if you’re interested in reading the story of my chronic illness, click the “Sicky” category and you can enjoy all that wacky content.
My insurance was canceled in 2017 (a post about that is to be found in the “Sicky” category, in fact) and the cancellation meant I could no longer see my doctors and surgeons. Because of grad school and work, it took me a long time to getting around to finding new doctors. Dragging my feet on this was bad … since I was due for a pouchoscopy. The pouchoscopy is done frequently with gimps like me because we’re at a higher risk for various bowel cancers than other folks. It’s also seriously important to check for inflammation inside my funky new body parts because inflammation could be a sign of pouchitis, which is basically Ulcerative Colitis (UC) of the j-pouch. Which would suck.
And then there’s this other thing that a pouchoscopy can reveal. A pouchoscopy can tell the doctor if you — in this case, me — might be exhibiting signs of Crohn’s Disease.
Let’s see how quick I can do this: If you have UC, it means your large intestine is eating itself alive but your small intestine is fine. With UC, you can have your entire colon removed, get an ostomy, and get a j-pouch and everything blows and it’s awful forever, but whatever. You’ve still got your small intestine and that’s something, at least.
If you have Crohn’s Disease, your large and small intestine are eating themselves alive. Crohn’s peeps undergo (often over and over and over) surgeries called “resectionings”. A resection is where a surgeon takes out a too-inflamed, too-ulcerated-to-save piece of your guts. There’s no total colectomy with Crohn’s like there is with UC, because Crohn’s folks need all the entrails they can get. Any piece could fail at any time, you know?
If a person like me, a person with zero large intestine (aka, colon) is diagnosed with Crohn’s Disease, this is bad. This is the worst thing. This is the hell thing. This is the thing that wakes me up at night, the thing that makes me bite my cuticles till they bleed. If I am diagnosed with Crohn’s — whether it manifested after all my other surgeries or if I was misdiagnosed 10 years ago, doesn’t matter — then I will eventually have to undergo resectionings.
If you take away enough small intestine because you have no large intestine to take from you will eventually run out of intestine. If you run out of intestine, you can still live. But you can’t eat. You’re fed intravenously. Forever. And because you no longer sh*t, they sew up your butt. It sounds sort of funny except that it isn’t funny.
When I walk into a hospital or a GI doctor’s office, I experience PTSD from all the needles and bags and accidents and procedures and trauma and despair that I’ve known in the last decade — and that’s just when I walk in. If I’m in the doctor’s office and my doctor looks concerned about lab results or looks concerned about what I’m telling her about how I’ve been feeling, I tremble and shake. I also begin to stutter? When I’m in the GI doc’s office and things get out of hand, it’s true: I can’t get my mouth to say words. It’s weird. It’s frightening. When I have to get a pouchoscopy scheduled, I just … I don’t want to exist in my head. That’s how bad it feels. Basically, going to see my GI doctor is one of the most awful things that can happen to me, even when I get a clean (for me) bill of health.
Guess when I had an appointment to see my GI doctor? Sometime in early January, maybe? Yeah, after my dog and my boyfriend disappeared, and right before I got denied for a home loan and right before a huge fight with my family. It was sorta right in the middle of all that. And remember: This appointment to see my GI doctor was an appointment to see a new GI doctor, because I lost my insurance. New smells. New hospitals. New travel times.
The new doctor needed me to go through my medical history there in her office. From the first words, I could feel the stutter was gonna happen. My eyes started pouring hot water. Trying to “get it together” made it worse. The doctor was patient, but she needed the info in order to help me. By the time I got to the end of the story, which concluded with weird symptoms I told her I’d been having for several months, I was … not good.
“I’m concerned, with what you’re telling me about your symptoms,” she said, after clackity-clacking on her keyboard some more. She looked grave. “We need to do the pouchoscopy you should’ve had six months ago. I’m concerned about Crohn’s Disease, from what you’ve been telling — ”
And I don’t remember what came after that. Wait, I do remember: The doctor told me to go upstairs to get my blood drawn at the lab and she’d follow up with me about scheduling the pouchoscopy “as soon as possible.” I nodded and shook her hand. With a kind of fuzzy, hysterical static sound in my brain and behind my eyes, I took the paper. I went up to the lab. I got to the door. My legs didn’t work. I turned around. I left the hospital. I nearly threw up in the Uber.
All I could think of as I slumped against the car door was feeding tubes.
When I got to my house, I went up to my apartment. I didn’t know that I wouldn’t leave for a while.