Being Sick, Getting Better

TL;DR – Talking about Health, the Help Machine, and living publicly

The Help Machine is a company that wants to make a difference; as the founder, staying healthy, staying on track, and being transparent are part of my core values. I don’t know if other people feel embarrased about Ulcerative Collitis, but maybe if they do, they can see me talking about my embarrassing stuff and feel a little better about things. If you make continuous, constant improvement, and focus on staying steady, anything is possible!

  • New Medication
  • New Mindset: The Original Mindset
  • Keep Going

New Medication

I’m waiting to hear from my doctor’s office about a new medication. The brand name is Entyvyo, and I’m excited to try it. Theoretically, I take a dose every few months. It replaces prednisone and any other steroids I would try. The side effects are also, if you’re lucky, mild to zero. The most frustrating thing about the last ten years for me has been knowing that, while my weight and hairline are likely genetics and age, there’s a just as likely chance it was from steroids for controlling inflamation. It’s just a reminder of how unhealthy I was, although not due to lack of effort or diet.

New Mindset: The Original Mindset

The thing I’m most excited about is the possibility of exercise again. I’ve tried to go back to the gym from time to time. When I was younger, I hated running. It wasn’t until I got into high school, and met Coach McNulty, that I found a joy in it. My brothers loved it. One of my older brothers was a cross-country runner, and used to run in meets around the area where we grew up. I was always a fat kid as a younger guy, though, and hated it.

Coach McNulty, though, was a great coach. And he used to let us go run around Black Lake near my high school. He had this way of looking at things, like weight lifting, that was all about building. You start slow, you build, you work steady. Working steady was the most important thing; whatever you could do in order to make improvements, that was the thing to do.

As I got fitter in high school, I discovered I liked to run. And I loved the solitude of running around Black Lake. My fitness would go up and down over the years as I got older, but that joy from running was there. In my mid-twenties, I finally got hold of my health, and was running, life was grand … and then came the Ulcerative Collitis. Most of the medications you take, for maintenance, are derivitives of messalamine. They keep your colon calm. If you have a flare, you need to take a variety of immunosuppresents, including steroids.

Between sudden intestinal cramps, steroids, bloating, weight gain, and more, running got harder and harder over the years. When I got to New York, it got to the point where I was both overweight, exhausted, and fearful that I’d suddenly get a cramp attack or sudden bout of diarrhea while in the middle of nowhere. I’d use the treadmills at the gym from time to time, but would always feel gross if my body decided to let loose with gas I couldn’t control. As a dude, I know I’m supposed to be proud of my ability to toot out loud smelly farts, but as a guy with UC, it’s just another reminder about how out of control my body can get. I shouldn’t feel embarrassed, being on a treadmill, and then letting it out, but I do. I don’t like making the world bad for people around me; living in someone’s smelly fart when you’re trying to run is not my idea of a great day, so making the world like that for someone else is just not what I’m about.

The prospect of some normalcy, including having the energy for fitness, is exciting. Still, it’s important not to rush things. Go slow. Just like when you’re starting to run again; if you want to hurt yourself, go run 3 miles as fast as you can after not running for a long time. You probably won’t be able to run again for a week. You walk, you jog, you build. That’s the way to do it.

As I got older, I learned about the Japanese manufacturing principle of Kaizen. The principle is deep enough that whole books have been written on it. Suffice to say, in a personal context, you can think of Kaizen as “little pushes.” It’s a philosophy of steady, continuous improvement. Consistency. Do every day. Just like Coach McNulty said when I was in high school.

That’s why it’s important to keep moving, and to keep going.

Keep Going

Ulcerative Collitis is a strange disease. People don’t quite understand it. People that have it, at least in my experience so far, sometimes underplay the severity of it. In an effort not to worry people, or call attention to a condition that’s sometimes just plain embarrassing, you may pretend that things aren’t as bad as they are.

At the least, I know I do, at least partly due to my character. Like, I really understand the Black Knight from ‘Monty Python and the Holy Grail.” When he’s getting hacked to pieces, and wants to continue to fight, and says after losing a limb, “it’s just a flesh wound!” that joke is funny, but it’s also real. Sometimes, you want to underplay the severity of a wound or an injury so you don’t look or feel weak.

But it’s a kind of delusion, to do that, depending on your frame of mind. For some people, the disease is more of a mild annoyance, that will perhaps incrementally increase the likihood of colon cancer later in life. For others, toxic megacolon and other complications are a regular part of life, which means removing your colon and hoping for the best; including the hope that you weren’t misdiagnosed. If it turns out you actually have Crohn’s disease, you can end up removing your colon and making things worse.

For me, I’m somewhere in the middle to bad end of the spectrum. There’s no sign that I need to remove my colon yet. There’s still medications I can try. Diet, stress reduction, and being mindful are the best way to deal with it. I have a great doctor, and all the luck I need.

I think I should follow-up with a post about what it’s like, from my perspective, to have Ulcerative Collitis.

But for now, the only thing that matters is treatment and pushing forward. I let things fall behind with The Help Machine by approximately 8 months; now is a great time to catch up!