ibd

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.

Being in the hospital with Crohn’s disease is miserable.

But before I get too negative, I have to confirm one major benefit to having an ostomy and being hospitalized: it’s a lot easier to give stool samples now. I don’t even need a toilet!

Anyways, while a lot of us who have chronic diseases often laugh it off or put on a happy face, and post to our social media accounts, it’s a slog. It’s not fun. You think long and hard and try anything and everything to avoid a hospitalization—and sometimes the stress you get from that makes the situation even worse!

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).

Alternate title: How I survive 8 hours on a toilet, then enjoy the most relaxing 30 minute nap of my life

I still haven't decided if gastrointestinal doctors are genuinely caring, or sociopaths.

If you have Crohn's or some other form of Inflammatory Bowel Disease (IBD), or if you're 50 or some multiple of ten beyond that, chances are you've had one or more colonoscopies. If you're even luckier, and have active and/or moderate-to-severe IBD, there's a good chance you've averaged at least one colonoscopy per year (my current record is two in a year!).

I'm prepping for my (by my count) 8th colonoscopy tonight, and while I still have the energy, I figured I might as well write something about the process, in the hope that I can make the process slightly better for you. There's something about sitting on a shiny white porcelain object that makes one wax eloquently about... human waste?

According to the Crohn's and Colitis Foundation of America, there are 1.6 million Americans with IBD (Inflammatory Bowel Disease). While that means less than 1% of Americans have either Crohn's or Colitis, that's a pretty big number—and chances are you know someone with IBD, maybe even a close relative!

But due to the fact that Crohn's is usually an invisible illness, many people don't know some of the myriad joys of a typical Crohn's patient's life. This blog post aims to clear that up.

Phobias

Most people I know have one or more of the following phobias: