Pizza Game

Sorry for the lack of updates. There’s much to tell, but no breaking news of real import. Just doing my time.

I’m still not able to eat. So here’s a little game we can play - Put your guess in the comments on the day I’ll first consume a pizza from Hutchins Garage again. Closest guess wins a pizza on me (airfare not included). People have asked me what the first thing I’ll eat will be, and that’s unfair because it’ll be whatever my health allows me to eat once my intestine is repaired. Be assured I’ll be eating a Hutchins pizza as soon as I’m allowed. So get your guesses in. On to less playful topics.

Since discharge from the hospital in late August, life follows a dull routine here. All nutrition and fluids are via IV into a PICC line in my arm. This process takes about 12 hours. With few exceptions, I’m in my room drawing the shades at 7:45PM, hooked up around 8, watching TV by 8:30, upstairs at 10:30. Then it’s out of bed at 7:30AM, unhooked around 8AM. Rinse and repeat.

The home health nurse comes 2x a week to change the bag around my open wound (warning: click at your own risk). Within the wound is at least one fistula, which is a hole in the small intestine. The fistula leaks fluid all day long into the wound bag. We initially had lots of issues with leaking wound bags, but seem to have that squared away in the past few weeks. I assist with the dressing removal and cleaning until looking at the wound becomes uncomfortable.

Note: Observing peristalsis in an exposed small intestine is fascinating. Observing peristalsis in your exposed small intestine is unnerving.

The doctors on discharge had given me some false hope that the fistula might heal on its own. Some internet research revealed that healing rates for fistulas exposed to atmospheric pressure rarely heal - A rate of less than 10% was the only published figure I could find. How could it heal, really? There’s fluid flowing through at all hours of the day. The cure for this issue is another operation, a resection where they can remove the hole and stitch the small intestine back together. Unfortunately, the guidelines state that a waiting period of at least 3 months after the initial surgery is required. It seems no one wanted to tell me in August I’d likely be missing Thanksgiving dinner. And Christmas breakfast. And Boxing Day brunch. Really, the whole kit & kaboodle.

The first few weeks back home were the hardest. At that time, a rinse and spit cup allowed me to at least taste some liquids. The kids got some food from a local taqueria and were good enough to grab me a big styrofoam cup of agua de jamaica, which tastes like Mexican Kool-Aid to me. It quickly became my drink of choice, although homemade and without the bracing level of sugar. Rinsing with sugar water several times a day is incompatible with dental health. The latest formulation involves dried hibiscus flowers from Compare and sugarless monk fruit extract - Tastes great.

Foodless and weakened, I was unhappy. Not depressed, but sad. My positive long term prognosis keeps me from saying I was depressed. My experience with depression is that the conflict between mood and state is the most frustrating aspect. Depression to me is hopelessness, even as things are OK. That’s not my current state. I have hope, and things are very much not OK. I’m sad, and with good reason.

After the first month, the surgeon messaged me to let me know I could consume liquids ‘for patient comfort’. This is also around the time I chewed up and spit out some lasagna. And then some homemade pasta with pork butt ragu. And then some Ben & Jerry’s.

Based on my own research (not yet peer reviewed), one can extract ~80% of the pleasure of Ben & Jerry’s ice cream without ever having swallowed it. My favorite flavor, Phish Food, is chocolate with marshmallow and caramel swirl. One evening I added some additional caramel, and then thought ‘hmm - Maybe that’s too much caramel’. Incorrect. The truth is that excess hot caramel is perfectly pleasant to spit into a bowl.

Chewing and spitting out food has greatly improved my mental state. I’m not happy by any means, but I’m less sad. The internet is full of warnings that this practice carries the risk of warping my relationship with food. That warning was targeted to bulimics, but it rings true in my case as well.

The effect is different depending on the food. Eat and spit out an entire Big Mac - You’ll likely find a craving satisfied completely (and perhaps permanently). McDonald’s cheeseburgers, on the other hand, store well in the fridge, run less than 2 bucks, and can bear a second inspection. Honey Smacks and milk were once a vacation-only treat. Now I can drink the milk at the bottom of the bowl. And then have another bowl.

Soon followed expanding interpretations of what constitutes a ‘liquid for patient comfort’. The initial reading of ‘surely this can’t mean a chocolate shake’ quickly gave way to ‘a Milky Way mini at body temperature qualifies’. As does cotton candy, M&Ms, espresso with ice cream in it, a sip from a spouse’s Manhattan…

Comfort is best judged by the patient, but is sadly not based on taste alone. The fistula isn’t far down into my digestive tract. The cost of a cold drink is a cool drooling sensation from my abdomen 15 minutes later. The effluent starts to fill the bag, which means a trip to the bathroom for draining. It’s a quick cycle.

The short run of small bowel means there’s also no significant caloric or nutritional intake. It’d be nice to down some veggie smoothies or probiotic kimchi, but nothing’s making it that far down the line. Nothing ever makes it to my actual ostomy (at the end of what remains of the large intestine). The TPN via IV has all the nutrition I need, they say. Which is fortunate, because it’s all I’m able to get. I’d drink cream if it meant calories.

I’ve gained some weight since my release, but not much. Hovering at 141lbs at the moment. The lack of weight gain coupled with my physical condition largely takes exercise off the table. The TPN dosage is already maxed out - 2800ml a night. That’s the only time my body takes in any hydration. Usually this means peeing 2 to 3 times a night. Usually after waking up.

Then there are the bag leaks. The bag adheres to the skin via a wax-like adhesive that starts to decay as the dressing ages. By the 3rd day, the bad is full of chunks of loose adhesive. We endured a run of 3 Fridays where a freshly applied bag was leaking by 5PM. I say ‘we’, because a leaky bag is a whole house emergency. With no nurse available to change the dressing at that hour, we turned to friends with enough nerve to give wound care a shot. Pre-bourbon may or may not have been involved - I honestly don’t know.

Stabilization of my nursing situation greatly helped things. The first 3 weeks had at least 4 different nurses attempting to change the bag. One attempt took 2-½ hours, only to spring a leak a few hours later. Now I have the same nurse every time, and we’ve done enough experimenting with pastes/creams/patterns that we have things down to a working process.

My jobs: answer door, have hot water ready, take off the wound dressing, clean the wound a bit, stop wincing, cut adhesive for a patch at the top of the wound, cut and place ostomy bag.

The nurse’s jobs: clean the wound after I give up, powder and coat any irritated areas, cut and apply the new wound bag, nod at dull conversational attempts from the patient.

The latest leaks have all been my fault. I did some reading on a process called topical oxygen therapy that is used to speed wound healing. It works like this: expose the wound to a pure O2 atmosphere for 90 minutes a day or so, and voila - Increased healing rate. You can google it, it’s a thing, mostly for diabetic ulcers that won’t heal. But it is mentioned for surgical wounds as well. My engineering brain requires that I optimize as many conditions as possible, especially if there is additional hardware required. So a Craigslist oxygen concentrator sits in our kitchen, along with 30 feet of tubing to allow me to take my air from my TV chair.

The leaks of late have been thru the hole I punch in the bag after the nurse leaves. The oxygen needs to get into the bag somehow, so a hole or slit near the top of the bag is the easiest solution. Taping over the hole provides incomplete coverage. I’ve come back from hole punching to cutting a small slit - This leaves an opening that reduces the exposure of the sealing tape to that which must be sealed in.

Other orderless thoughts:

The sheer amount of material involved is daunting. Every IV hookup involves alcohol wipes, saline and heparin injections, needles and tubes, and ziploc bags large enough to store a human head. Plus there’s the matter of fridge space when 2.8 liters x 7 is delivered every Wednesday. Boxes and boxes, every week.

Small project of replacing our front door knob went well. Threw the included keys away, because the Smart Key system let me re-key the lock to my house keys. Days later, I installed the deadbolt as well. Only then did I recognize that those original keys were needed after all in order to re-key the deadbolt. Trash is bad enough to search. Trash full of regurgitated food? Not fun. I did find the keys, tho. Only the 2nd bag I searched. Finding them spared me a shame-filled visit to the excellent folks at Don Hill’s Lock & Safe.

Compliments about me keeping my sense of humor are appreciated, but I don’t feel like I had any options. I’m not physically able to eat, and yet I still love food. Many years ago, Karen’s sister tried to sell me with ‘he’s funny and he likes to cook’. Still mostly accurate. I’m still me.

Haven’t tried much alcohol - Despite the ‘liquids for patient comfort’ option, I doubt bathing the wound in unabsorbed ethanol would be wise. Especially what with the pure oxygen bath I’ve been giving things. A nearby candle could be the end of me.

Karen and the kids have been very supportive, which I appreciate greatly. My condition has led to a glut of TV watching every evening, and they usually watch things I’m interested in. Except ‘The Amazing Race’ - I’m tired of that one.

I have no body fat, so I’m often cold. The wound bag is low enough to interfere with my waistline. So it’s all athletic shorts and sweatpants for me. The PICC line is on the inside of my arm, near the elbow - So short sleeve shirts are required. Luckily we have blankets.

Went to a couple of DPAC things - If I start my injection early, I can take a break during the performance and then start things back up when I get home. Father John Misty was the first show Karen and I went to - He was backed by 9 musicians, which was much more than I expected. The next weekend, neighbors gifted us some tickets to see Steve Martin and Martin Short, which was a lot of fun. They tour with Steep Canyon Rangers - The music bits were every bit as good as the comedy numbers.

Slightly conflicted at the waste of food that comes with my current consumption. I’m hesitant to go buy a more expensive burger from a local joint when I’m just going to spit it out - Hence the Mickey D’s trips. For me, it comes down to the fact that tasting food makes me a bearable person to live with. Plus I ate that expired burrata that no one else was going to touch anyway. I earned these Honey Smacks. Thoughts of rejecting my sensualist ways for a more ascetic life outlook were short lived.

Working a few hours a day is good for my sanity. Going after new work and new clients seems like a low priority given everything else on the docket. I’m taking things as they come in, and that’s enough to keep me busy.

I’ll stop there. Readers, I hope all is well in your world. Don’t forget to leave a pizzadate guess in the comments. ~Ed