I was diagnosed with mild gastroparesis about five years ago. All this means it that my stomach is slow, stupid and lazy. What I eat or drink sits in there longer than it should before being pushed into my small intestine. The severity fluctuates. Anything from heat to a recent viral bug can exacerbate it. A couple of years ago I wasn’t able to keep anything down for over a month and the GI jerk face threw a prescription at me for Metoclopramide, a gastric prokinetic drug (it makes a stomach get off of its keister and do some frickin’ work). He said “Call it what you want. Gastroparesis, functional dyspepsia, whatever. It’s all the same and I can’t help you.”
Thanks, man. Is it any wonder I avoided him like he was made of poison ivy? November of 2015 I had the same problem again and was hospitalized, which meant a follow-up at gastroenterology was scheduled for me. Booooo! This time he prescribed promethazine suppositories because I couldn’t even keep pills down. Great.
Recently, my guess is five months of not being able to eat much because I fill up quickly, have zero appetite, major reflux, and occasionally just blarrrg a little while after eating. It’s one thing to say eating is an issue at an appointment. It’s another thing to be monitored so closely that they see what happens every time I try to eat or drink. First I did TPN, then I tried soft foods and oral meds. Nope and nope. That’s when I had my first NJ tube put in. After a couple of weeks of constant clogs, I had a larger tube put in. Larger=more discomfort=more gagging. It was a battle between wanting to say ‘fuckit’ and knowing that without it, I’d starve to death.
I had an upper endoscopy earlier this week for two reasons. 1) To see if there’s something structural that’s causing the contents of my stomach to back up and 2) To determine if the melena (black, tarry stool synonymous with blood from the upper/mid GI tract) is from gastric bleeding. It was negative on both counts, but there were plenty of non-bleeding ulcers. Appearance-wise, the dude who did the endoscopy said he’s fairly confident it’s gastroduodenal Crohn’s disease. That has been tossed around as a possibility for quite a while, but I’ve only had three upper endoscopies to my dozen colonoscopies. The top-side has been ignored because I have documented “mild gastroparesis”. The biopsies were positive for Crohn’s type inflammation, so there we go. The pixies have moved into my stomach. As for the bleeding, it’s of concern. I’ve been on high dose steroids for several weeks which should have taken care of it. Given the fragile state of my guts and a high likelihood of perforation, I find myself in yet another “wait and see” scenario.
Early yesterday morning I pulled my NJ tube out while I was half-asleep. The doctor on-call said I’d need another one. I said no, then said no to everyone else who told me I’d have to have another one put in. I was saying no just for the sake of saying no. This is how I’ve been operating lately – like a fucking five year old. I’m so unbelievably frustrated with my life that pissing people off is the only way I feel I have power over anything.
When my endoscopy was scheduled, I was also scheduled for another gastric emptying study that I completed this morning. By some freakish miracle, I was able to keep my radioactive breakfast down long enough to complete the 4 hour study. I went back to my room to start my last of five plasmapheresis plasma exchanges that was originally scheduled for tomorrow, but I’m being discharged tomorrow per my request. I had just fallen asleep when the GI hooker waltzed in and said my four hour retention of stomach contents was 65%, anything greater than 10% is gastroparesis and anything over 50% is “very severe” gastroparesis. So here I am, without a tube and with very severe gastroparesis and gastric Crohn’s.
Normally they’d throw pharmaceuticals at it, but in my case it’s far too dangerous. That leaves us three options (or four, if you count doing nothing an option – I certainly do).
- Another NJ tube
- GJ-tube, which is surgically placed through the abdominal wall
- Implanting a gastric electrical stimulator
On top of everything else (heart failure, kidney failure, seizures, neuromyelitis, etc), it’s just too much. I’ve had plenty of time to think about everything, to the point of simultaneously driving myself insane and into a deep depression. There are no guarantees I’ll ever feel better and though I keep telling myself it’s a possibility, I continue to go downhill. I don’t want to die, but what I have isn’t a life I want either.
Tomorrow I’ll be discharged against medical advice and I’m not sure where I’ll go from here. What I want my plan to be when I inevitably find myself in need of ‘saving’ all over again. I’m not catastrophizing or being overly dramatic, I’m being realistic. I am majorly depressed and I know it’s a problem. It’s preventing me from making any sort of decision about future care. I’m afraid that by admitting to this, I’ll lose my rights to have a say in any of it.
If not for Western medicine, I’d have been dead two months ago and several times before that. The cost is my spirit. It’s gone. In that aspect I died a long time ago.