Colons, semicolons, and Crohns surgery, oh my!

"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.

Colectomy diagram - red scribbles over large intestine colon and rectum

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!).

Semicolon cartoon - I had part of my colon removed - from Pinterest, source unknown

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:

Prednisone made me lose my mind. Perhaps I'll find it in the fridge behind all this delicious food.

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!

Crohn's Treatment Medication Pyramid - I made it to the top surgery

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:

Geyser Eruption

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 "skip sprint 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.

What do my dog and I have in common? We both use poop bags - Ostomy joke

Last Thoughts

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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Comments

Wishing you quick recovery. I will definitely pray for you.

Thank you for writing this, Jeff. We love you!

Continued prayers. My best friend’s daughter calls her ostomy her “poopy bag”......it’s got a nice ring to it. :)

Hi Jeff,
I am a friend of your Mom's and we have been praying for you for a long time and will pray you through this surgery and recovery. I know the Lord will be with you every step of the way. We are praying for your family too!
Love & Peace,
Debbie Henderson

As someone who shares your DNA and some of the same symptoms, I appreciate your writing and humor about this issue. Grandma also used to say, "Laughter is the best medicine." Humor brings healing. You are my hero! And I have some really bad Aunt Ellen puns for you later.

I am so sorry you have had this suffering in your life. I don’t know you but do know a number of Geerlings all the way back to Bernie Geerling from St. Dismas parish where my children spent some years attending St. Dismiss School and where we were parishioners. That’s before we moved to the “Primised Land” in O’Fallon. Lol!!!

As a fellow Crohnie who has just had a routine colonoscopy... lucky you, no more cameras up your bum! In all seriousness, I hope the surgery goes well and gives you a little bit more freedom back with your life. One day soon you'll forget how many bathroom tiles there are and have to sit in there and count them all just for 'old times sake'.

Don’t worry, cousin - you’ve got this in the bag!

Sorry that was such a shitty pun.

My post is really going down the crapper.

Okay, I think I’m done now. We love you and wish you a speedy and uncomplicated recovery. I can’t wait to read more of your inspiring post-surgery adventures. Here’s to the rest of 2018 being way better than the first half!

Nice.

Special prayers for you and a continued fulfilling life in service to God, your family, and all mankind.

Good luck today Jeff!!

When you miss a semicolon on your code now you can say you don't have a semicolon.

Jokes aside, get better and hopefully everything goes well!

Haha, thanks; as a C-style programmer this is relevant!

Prayers for the power of God's healing on you, Jeff. I've enjoyed following your Pi projects over the past couple of years not knowing you were having such discomfort. Your positive outlook is inspirational, though, and I'm going to get busy and build a Drupal Pi right away so that there will be plenty of "help me??" questions for you to address when you're recovery allows. ;)

In all seriousness, best wishes for you and your family.

I bookmarked this post months ago to remember to pray for you. Since then, my 15yo son has been diagnosed with Crohn's, and I've reread and learned so much more than I did the first time through. Thank you for sharing, and for teaching! ;) Blessings and continued prayers!

Oh no! So sorry about having to deal with Crohn's—but I will say a prayer for your family as you figure out how to live with Crohn's. Please make sure to find any local Crohn's and Colitis community (most cities have one, and there are often great events where you can meet other people with it, learn more about it, etc.).

And one other piece of advice: if you get a recommendation for something like surgery or a new drug you're not quite comfortable with, please seek out a 2nd opinion. It's not that your primary specialist GI doc is wrong, it's that it's good for you to know if you have other options you can pursue. I love all my GI docs, but I also know that each one of them has a different opinion and only you know your full health history and what you are comfortable with!