Part of the wrong 1% — Ostomy surgery, part 2

About 1 percent of Americans have diagnosed Inflammatory Bowel Disease (IBD) like Crohn's Disease or Ulcerative Colitis. And about 1 in 500 Americans (0.2%) have ostomies—small openings called stomas that help when their bowels get really screwed up (whether through disease, cancer, or trauma).

IBD Ostomy and Me Venn Diagram

I'm in both groups. And this month, I had a second ostomy surgery. I now have a revised stoma, so now I'm in the 0.001% of Americans who have IBD and have had multiple ostomies!

I'm not sure that's the type of 'one-percent' I want to be...

But I digress.

For this surgery, I decided to bring a GoPro and have visitors ask me about the healing process. I put that footage together into this video:

I wrote about my first ostomy surgery earlier posts: part one | part two.


For this surgery, I had four years living with a stoma under my belt—well, actually just above my belt, since it would be a lot less comfortable to have a stoma under my belt! So I knew what to expect there. Getting a new ostomy can be a shock, especially if you didn't have a long time to get comfortable with the idea beforehand.

For my 2018 surgery, I got a new ostomy and had my rectum removed (a proctocolectomy), so I thought this time around, the pain might not be as bad, since we were only working on the top side.

But no. I guess I didn't really understand how stomas are formed, but when I first looked at my new stomach, I noticed a big gaping hole on the right side (where the stoma used to be), and a vast amount of pain from the long midline incision.

Because this surgery was open, and not laparoscopic, I came out with 18 staples along a 14cm midline incision—and that's in addition to the extra stitches both internal and around the old wound!

At this point in my life I'm pretty good at measuring pain on the infamous pain scale we use in the US:

Pain scale chart from

Level 10 is the state where the only utterance you can make is a pained groaning sound, and you are only thinking of one thing: "How can I get this pain to stop?"

Luckily, after a few hours, and a dose or two of dilauded, the pain went down to a much more manageable 8 or so, which was low enough I could open my eyes and talk.

Pain management is a tricky business: too much pain, and my eagerness to do necessary tasks like get out of bed and take a walk is reduced. Too many or too frequent painkiller doses, and you risk muting senses too much (even to the point of death!), or you risk addiction.

Since I've lived with IBD for two decades, my pain tolerance is fairly high. I was able to come off the pain meds pretty quickly. Sometimes with IBD, I'll go weeks at a level 3 or 4, and so a 5 or 6 for a few days isn't too bothersome.

Exploring the Hospital

I always try to keep my curiosity well fed during a hospital visit, so instead of walking just to check off the 'PT' box, I also try to walk at certain times when there's more activity in the halls, or walk around areas of the hospital with more interesting features.

One door in particular caught my eye, so I made a point of walking by it every time I left my room:

Comms room door at BJC West County Hospital

Behind the door, I heard the pleasant sound of dozens of screaming server fans. As luck would have it, one time two hospital IT techs wearing hard hats exited the room as I passed.

I only had about half a second to look, but it looked like there were at least three racks full of networking and server equipment, which would make sense.

Each room in the hospital has at least three computers (a Tiny PC on the back of the patient TV, a patient tablet, and a PC connected to Epic for the nurses to use), plus there's decently-fast in-room WiFi. Not to mention the dozens of PCs, tracking devices, and other wireless equipment roaming the halls.

I was tempted to scoot quickly to the door and keep it from locking, but decided against it, for two reasons:

  1. I don't think "I'm a tech YouTuber who does homelab stuff" would cut it when the hospital security guy inevitably caught me shuffling away.
  2. I would've probably popped a staple or two lunging for the door, and they'd have DNA evidence of my entry.

The servers seemed fine and dandy, but the in-room entertainment PCs—in the two different rooms I inhabited across two stays—were a little worse for the wear:

In room patient PC TV entertainment screen is locked up windows reboot

In an unfortunate turn of events, the PC would reboot during every World Cup match I viewed, but most frequently during Argentina's games.

Maybe I could get them to use Raspberry Pi-based commercial displays instead!

Healing still

I've been home for a couple weeks now. I still have a substantial wound that's healing slowly but surely. But my new stoma is behaving quite nicely. Certainly a lot better than the old one, which was so deteriorated due to Crohn's inflammation I had to have this surgery!

I've finally had the energy to edit the video from the hospital and write this blog post. That's not much, but it's something.

It's good to keep my mind sharp and not completely veg out watching YouTube and Netflix. Especially since I don't even have Netflix anymore.

I hope to be back in action in January, working on my technical projects and videos again, but until then, Happy New Year!


I’ve watched your videos for years. I was diagnosed with ibs in 2013 but thankfully it never progressed worse and I’ve been managing it ever since. I also work in computers. I will be praying for you and your wounds. I can only imaging have my rectum removed. You are really strong. God bless.

Best wishes, my dad has had an Ostomy for nearly 40 years

Hope you get better soon. I went through a similar process. I wore a ostomy bag for a year after a bout with bubble pockets in my intestine filling up with seeds. Finally had the reverse operation to get my butt reattached. So yep I am with you. I still have a section of my stomach scar that has no nerves so I can't feel anything in a 8 X 2 inch section where the stoma was.

My last regular IT position I spent the first almost 4 years working as a senior network engineer. Every time I pass a "comms" or "telephone" marked room like this one in hospitals, colleges and universities, and really any kind of building I can't resist the urge to put my ear close to the door and listen for the loud whirr of switch, server, etc. gear. In general when I'm close to or pass by technology-heavy IDFs / MDFs or buildings I can't resist the urge to scope them out. Strange compulsion I suppose.

Epic instance runs within a citrix enviroment and the access is made through a AD group. The more you know ;)

Your video just triggered some feelings in me. I have a different, but still similar story.... I got my ileostomy almost 30 years ago, because of Crohn's disease of course. About 5 years ago a proctocolectomy for bowel cancer and just recently, last September my ileostomy had to be "replaced", 8 hour open surgery due to massive scarring. The old ileostoma failed due to scarring and fistulas. Now I am struggling daily with my new stoma, old and new routines and I haven't found the right stoma material yet either.... Hopefully it will work better for you! Life with Crohn's disease is not always easy, is it? Anyway, I respect your courage and your will! And it seems you are already fit enough to make new videos! I wish you all the best and send you many greetings from Switzerland. Thomas