ostomy

I've been involved in open source communities for over a decade. I helped organize events and initiatives, I've donated photography services, and in general I like to give back. For me, a lot of this stems from my faith background—the motto of my Jesuit high school was 'Men for Others'.

But I would consider myself a 'moderately active' volunteer, compared to some. I might give a few hours here and there, or help at a major event for part of the time, but there are people who have a drive and passion for helping others that's far beyond my capacity.

A few years ago, I had a major, life-changing surgery. In researching the surgery and it's life-long impact, I discovered a local support group affiliated with the UOAA organization. I attended a local meetup before the surgery, and met vibrant, healthy people who had gone through the trauma I was about to experience. I kept attending, and now try to ease their anxiety of people who come after.

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).

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.

After battling IBD complications through the summer and fall, I've come to a point where surgery is necessary. You can learn more about my health issues in my lighthearted book about Crohn's Disease, You Only Have Crohn's Once!.

The surgery (an ostomy revision) will take place tomorrow, December 2, and it'll be a pretty rough recovery, so I'm not planning on doing any substantial work until at least 2023.

It's ironic I had just given a presentation titled Just Say No: Staying sane while you maintain weeks before learning the surgery was necessary. I was planning a video on the topic (burnout, protecting your time, and open source maintainership) this year, but I guess the blog post will have to do.

I have plenty of fun tech and software I want to highlight here and on YouTube (some of it detailed in my video embedded below), but for now it's all on the shelf waiting until my strength returns:

I have Crohn's disease. More specifically, severe Crohn's disease.

Crohn's disease is one of a class of autoimmune diseases. The common theme for these diseases (including RA, Lupus, Colitis, MS, Psoriasis, etc.) is your body's immune system decides it's more fun attacking your own body than it is to attack outside infections.

Currently, there are no cures for Crohns or Colitis (a very closely related Inflammatory Bowel Disease). There is no diet, no lifestyle change, and no pill that can make those suffering from a Crohn's disease flare-up heal permanently.

There are a lot of drugs that can help. I should know, I've been on literally every one of them.

But for many people with IBD, the drugs stop helping (or never help in the first place), and your immune system goes thermonuclear on your guts. This happened to me last year.

It's been just over two weeks since the big one; I had my colon removed and was given in its place an ileostomy, which dramatically changes the way I go number two.

As with most stages of my Crohn's journey, I thought I'd write up this blog post with my experiences—and maybe a liiiiittle sarcasm thrown in—for the benefit of anyone else going through a similar situation.

Bowel Prep

My doctor requested a full cleanout for this surgery, I guess so he wouldn't have to deal with stinky poo while yanking out my guts, and I obliged. Unfortunately, for most Crohnies or IBD patients who have to get a colectomy, they're already not in a great place prior to surgery, and neither was I. I was already underweight and not nearly 100% energy-wise, so having to empty out (same prep as for a colonoscopy) meant I did as much as I could to stay hydrated and not faint.

"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).