"Rectum? Darn near killed 'em!"
— My Grandma, every time she has the opportunity...
In a short time, I'll be getting a "total colectomy and proctectomy" (or, for short, "proctocolectomy"!). This is a procedure where a doctor takes a robot with pointy sticks and knives, sets it loose in my belly, and then the robot proceeds to
become sentient and take over my body cut out all of my digestive system, from the end of the small bowel, to... the end end.
Red = parts to be removed (source: Wikipedia).
As with most things medical, I started researching everything I could about the surgery and aftermath—what is done, how it's done, common preparations, expected outcomes, potential side-effects, long-term health impact, etc.
The major downside to this operation is that I will no longer be able to make jokes about having a semicolon. You see, I had a partial resection back in 2016, and since the doctor removed 6" of my large intestine, I was finally able to say I had a semicolon! But no longer. Wish I would've come up with a few more witty jokes for that, especially considering I'm a programmer; semicolons are great fodder for crossover jokes. I guess now I can talk about my stolen colon (ba-dum, tiss!).
Anyways, 2018 has been a pretty 💩-y year for me, and it started off with a hospitalization due to CMV... then a month later another hospitalization due to an infection and painful abscess. All the while, I was anemic and lost tons of weight... which meant I got a super-high dose of Prednisone. Prednisone lifted my spirits and helped stabilize my weight, but it's far from a cure. Plus it does things like:
A long time ago, when I was first diagnosed with Crohn's disease, the doctor drew a pyramid of treatments, and the top of it was 'surgery'. Well, at this point, I've climbed that mountain, found out what it's like to have allergic reactions to many different drugs, to be immunosuppressed for over a decade (hint: every little illness turns into a big illness. Not fun!), and how uncomfortable it is to have a PICC line in my arm!
I also have the family record for number of colonoscopies—and I think also for MRIs, CT scans, and Barium Enemas, yahoo!
In case you're wondering what a Barium Enema is, imagine you're a beached whale, flopping around helplessly on a hard table (instead of beach sand), and someone just jammed a ton of chalky milk up your hindparts... then, you get about ten seconds after the 'plug' is removed before this happens:
Throughout all this time, I have done my best to work with my wife in raising three beautiful children under the age of six, do amazing things in my full-time job, and participate in hobbies (like photography, writing, and open source work) that make my life happy. But 2018 really did a number on that. And I have been realizing how important it is to share my IBD story (thus this blog post), and read and listen to other people's IBD stories. All of us have a different journey, but for many, the major milestones are the same.
And I'll be reaching one of the biggest milestones—no more colon, and an ostomy!—in a very short time.
Usually, for those with IBD, major decisions like when to have minor or major surgeries are left up to the patient. Sometimes an emergency situation dictates immediate action (my first resection surgery had to happen quickly due to a stricture in my colon that could've become a life-threatening problem!), but usually there's a long, drawn out period where symptoms get worse to the point the patient consults with his doctor, then finally decides enough is enough.
That happened to me this year, as over the first half of the year Crohn's-related problems kept beating down my body until my guts (and my mind) said ENOUGH! Once logically came to the conclusion that surgery was inevitable, I had to accept the decision psychologically. Pooping into a bag instead of through your bum is a pretty major change, so I wrote down the benefits and downsides to the operation:
Benefits of a Proctocolectomy and Ostomy
- Continence! No more "
skipsprint to my loo", ever! 🏃♂️
- There is no chance I'll get colon cancer, because... well... I won't have a colon!
- In the same vein, no more colonoscopies, ever, yay! And no more barium enemas either (shudder).
- I will be able to gain weight. (For IBD patients, gaining weight is something of an achievement.)
- Using a public restroom won't make me long for my bidet. No more panic attacks upon the sight of 1-Ply!
- Just say no to drugs: I will be, for the first time in over a decade, free from any immunosuppresant drugs, which turn colds into nightmares, and a bad illness like mono/EBV into a death threat. Good riddance!
- Who says men can't multitask? I'll be able to poop and eat at the same time!
- No more complications 'down under'—I won't get into the details here 🤭.
Downsides of a Proctocolectomy and Ostomy
- The obvious one: I'll always carry around a little sack of poo, everywhere I go.
- Not knowing when I pass gas. Apparently the ostomy bag just kind of 'puffs up' and you have to release the gas. (Note to self: could be a benefit, if I want to get out of an awkward situation.)
- Having a permanent hernia in my abdominal wall. So 'gold medal in olympic deadlift' is probably out.
- I won't be able to take a strong punch to the gut—unless I buy this TITANIUM ARMORED ostomy wrap!!! MOAR POWER!
- Laughing will hurt for a few weeks. So I'm not going to read your comments until things are healed up, sorry.
All in all, it's a pretty even trade. But the ability to absorb nutrients better, not spend hours on the toilet, not race to the toilet (yes, Crohnies literally sprint to the toilet quite often)—these things will be life-changing for me. Crohn's has really been holding me back for the past 6 months (and, I guess, the past 15 years now!), and this surgery is my best shot right now at getting the upper hand. The hope is for permanent total remission, and there's a chance that may happen. But there's also a decent chance Crohn's will show up in some other part of my digestive system... I'll take things one day at a time.
For the next few days, I'm getting everything prepped for this major surgery and lifestyle change. Please say a prayer for me, and also for all other IBD (and other) patients who are considering getting a total or partial colectomy and ostomy. It's an intimidating operation, and one hanging over every IBD patient's head—often for years! I hope to have some wonderful things to share after I'm recovered enough to share them. Or I might post something while I'm on a heavy dose of pain killers... that could be fun 🤪!
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