Go tell it on the mountain

Hello wonderful friends and family and random internet stalkers,

I received an email yesterday as part of a mailing list from a guy named Adam who runs a website called ihaveuc.com.  His site has been a functional and emotional resource for me.  It’s a chance to read about how others are dealing with UC and ideas for things I can do.  Adam is a very down to earth person and just enjoys running the community.  Anyway, his email reminded me of why it’s good to talk about colitis and to be more open about what’s going on with me.

More to come later, but here’s the email I received.  I thought it was worth sharing.  Some background, Adam was pretty lucky in the grand scheme of colitis and didn’t have symptoms for too long and has been in remission for a few years.  Sidenote: I’m going to an integrative medicine day event at UCSD today which I’m hoping will be fun and educational.  I’ll let you all know how it goes!

————-

ALRIGHT, SO HERE’S THE DEAL,
last night I was over at a friend’s house for dinner (my wife was out with her girlfriends at some Czech meetup group deal in Mountain View) and I had a pretty crazy realization.

Even though I thought these friends knew all about my colitis, and all of the symptoms that go along with it, I was wrong. I must have left some things out.

We were all sitting down at dinner, and somehow the topic of the iHaveUC website came up. My buddy’s wife started asking me about a few things…one thing led to another and I was reading off somebody’s story with an iPad over dinner.(that’s what you’d expect from me right:) Like most of the stories on the website, they start with an introduction, then a section about symptoms.

I started reading “This went on for 2 years, on and off the Prednisone to stop the bleeding, toilet 20 or more times a day, taking immodium just to go to work”, and then I read out a bit more, but since we were eating dinner and looking at iPads, something told me it wasn’t the time to get into the story much longer.

There was total silence.

Then, after a few seconds, my buddy’s wife asked if I also had bleeding when I was real sick several years ago. “UH, Heck Yeah”, I told her. “I was bleeding like crazy for weeks and weeks, of course I was bleeding.”

It’s one thing to be talking about my “old symptoms” now. Of course it’s easy to tell friends and family that things were awful and really bad “back in the day when I was severe”. It’s easy now to talk about it. But what if I was still severe with nasty UC? Would it still be easy to talk about?

The answer might be “NO”, but at the same time, it can also be a “YES”. That’s up to the UC’er.

One thing is for certain. This disease is not something that the average person learns about. Average people who don’t have UC don’t go reading up on google, or youtube, or the iHaveUC site about this funny thing called ulcerative colitis. Outsiders to UC just don’t do that for shits and giggles, at least I hope not right!

So guess what, I’m happy to report to you that getting the real deal message across is our job. That’s right, the UC’ers of the world have some more work to do. We need to let others know what it’s REALLY ALL ABOUT.

Once you explain the bloody details that active ulcerative colitis can often mean blood flying out of your poop hole and into the toilet for weeks and months on end, that type of thing sticks into people’s brains. And especially if you follow up with telling whoever you’re talking to WHAT YOU THINK, and WHY YOU THINK this is all happening.

If you explain the dirty details about active UC symptoms early on, I can promise that when you’re sitting down to dinner several years later, symptom free and feeling great, the person you explained UC to before won’t be asking you “Did you have bleeding like that other UC person…?”

Just like everything else with this disease, the choice is always UP TO YOU. You can tell people the real deal about UC, or you can hide the reality. I think it’s better to educate the whole story. And you know what, your friends are interested in the details…more than you’d think.

Take care, and I hope you’re ready for the next survey, another one is coming up soon.

Warm regards,

Adam Scheuer

ALISA’S MUSIC CORNER

We recently wiped out our Macbook Pro after downloading something weird…plus with the whole java thing and our Babelcomputer acting slow and funky, we wanted to be on the safe side.  I backed everything up on our external drive but for some reason, the new Mumford & Sons album didn’t get saved, I overlooked it.  I just re-uploaded it this morning and am listening to it right now!  It sounds very similar to their last album but I love their last album so I guess it’s a good problem to have.  “I Will Wait For You” gets stuck in my head for days.  FYI, Phillip Phillips totally ripped off their sound with his first single, “Home.”  I honestly thought it was them on the radio yesterday.  Props to him for being the first American Idol winner to be played on our local indie-rock channel though.

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Categories: Colitis | Tags: , , | 3 Comments

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3 thoughts on “Go tell it on the mountain

  1. Michelle Beckmann

    Hi Sister,

    Thanks for writing & sharing.

    I love you :)

  2. Terri Duran

    Hello, I noticed that i’ve read the last 3 posts backwards! So UC can go into long term remission? I don’t remember catching that. I do know that anything is possible. What a grand statement….anything is possible. That’s hugh! I”m reading yoga books right now so my mind is blown right now with possibilities of the mind and body. xoxo mama

    • According to western medicine, there can be long periods of remission, but no cure exists. Most of the people I read about who go into long-term remission still have flares rarely to occasionally. I’m hoping to challenge the “incurable” label that’s been put on me! Love you!

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