Crohnology is delighted to introduce you to this week's featured e-Patient! Make sure to check out our recurring interviews with some serious blogging talent. We’ll do the hard-nosed journalism; you just sit back and enjoy the show.
Our first honored guest is Adam, from iHaveUC.
Here's the quick and dirty: 33 years old (a few grey hairs), married, no kids yet, never arrested, graduated CU Boulder - GO BUFFS!
Did I ever think of myself running a website used in 150 countries when I was a little boy? HELL NO!
And a website that was all about blood, poop, gas, more poops and everything else that is part of ulcerative colitis? Come on...
But, you can't plan everything. And that's quite alright.
I was diagnosed with severe colitis back in Oct. of 2008, and I started the iHaveUC.com website about a year later. Shortly after launching, I stopped feeling alone, and began learning from everyone else who was adding their story to the site. (Mostly UC'ers, but some Crohn's folks too).
I never imagined there were so many people (sometimes just a few blocks away) going through such similar experiences.
One of the very first stories that was submitted was from a young girl from the country of Jordan. I'll never forget how she went into detail about why she didn't want to let her fiance know about her diagnosis and condition. She was hiding it from the person she was going to marry. You can't help but feel pain knowing someone is hiding the symptoms that come along with this disease. It bugs the hell out of me, knowing this goes on every day all over the planet.
My answer here has changed quite a bit since my original diagnosis, here's what I used to tell people who asked the "What is UC" question:
"There's this army inside my colon and they are shooting their guns off for no reason, the bullets are cutting me open, but they just keep shooting."
My favorite thing to do recently has been running interesting surveys with the colitis people from around the world. There are all kinds of questions that patients, family, and friends would love to ask the IBD community, and the internet makes that possible. Some of the recent surveys that I've conducted have been focused on topics such as Surgery, Relationships, Prednisone Side Effects, and Remicade infusions to name a few.
Now I take a much bigger interest in other people's health. Take for example someone who appears to be sick, or "not feeling good". Unless you ask, you may not learn why that person is not feeling well. So I try to ask others if I suspect they are feeling crappy. Friends, family members, pretty much anyone. I've learned that although most people are shy when it comes to discussing health problems, if you ask in a sincere way, the conversations can usually go on forever. Being a good listener is a great skill, and one that I'm always working on improving.
I'm the type of person who has new projects all the time, maybe too many, since so many go unfinished. The current project is in the early planning stages and involves lots of water, lots of salt, some wind, some sandals, and a few passports.
Taking some alone time and going on walks is super important to me. I'm the guy who loves to walk out of work and go on the 10-20 minute walk around the block by myself and let my brain do its own dance. It's not so much the exercise, but the simple pleasure of being outside, moving around, and thinking up new ideas is more important to me than most of the junk I've accumulated in the closet. A nice little walk always makes me feel better.
Yeah actually, some friends came over last weekend that my wife and I hadn't seen in a while. A year earlier we were at a restaurant doing the "what type of business could we start" and I guess we talked about a monthly sock club. Somehow I forgot all about the talk, but they went ahead and got the idea going. I hope they do real well, they're super cool people.
Stuffed bunny rabbit toy (Made in China)
Dana recently wrote an incredible post:UC on the Subway
Kim's story is so relatable and the discussion proved it:My Life Now - NOT an Eating Disorder
A doctor who has UC wrote his story just a few weeks ago too:The Urgency is So Frustrating
Thanks again to Adam, and stay tuned for our next featured e-Patient Blogger!
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