I was diagnosed with Crohn's Disease in 1994. Along the way, I learned how to deal with this disease- I'm fluent in doctor speak, there's no drama in my ER visits, and I can laugh at just about everything. And along the way, I learned how to stop fighting through the tests, the pain and the surgeries (to remove portions of my ileum).

I learned how to live.

I like my life, and I'm not so sure I'd be here if it weren't for Crohn's and everything that's come with it. So I'm inviting you into my life. I hope my experiences, the hilarious and the horrendous, can give some perspective on a patient, a daughter, a wife and a happy woman.

This isn't just about me. I've got some suggestions for your next doctor or hospital visit at the bottom of the page.

Nate and Me

Nate and Me
My husband and biggest fan is always by my side

ADVICE FROM THE GUT



GET PACKING...
Imagine sitting in an uncomfortable waiting room with bright lights and miserable people all around you.  Now imagine sitting there for five or six hours.  That's not uncommon.
There's a good chance there will be a TV with "Hannah Montana" on the Disney Channel and Highlights for Kids magazines on the tables.


So pack a snack or two and a beverage or two.  Bring a book or a few magazines. 


The two best items for a waiting room?  A laptop and some DVDs (along with a power cord and headphones) and something that has video games- like your phone or computer.

Your number one goal is to stay calm and stay distracted until your name is called.  So plan ahead.



WARM BLANKETS...
 There is a lot of equipment to keep from overheating in the hospital... especially in the E.R.

Lying in bed with just a sheet and your hospital gown can be cold.  When your nurse is running around and working up a sweat, she might not notice you're uncomfortable.  He might not ask if he can get you anything.

Anybody you see can help you with this one... ask for a warm blanket.  That's right, most hospitals have blanket warmers.  If you're chilled, don't be afraid to ask for one.  Do whatever it takes to be more comfortable... even if you just need the angle of your bed adjusted.

Just ask.  Politely, of course. 
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CRACK A JOKE OR A SMILE...

The art of successfully dealing with a chronic illness is all about finding humor in whatever you can.  Humor, even the darkest kind, is a great distraction.


If you can lighten the mood, even a little, you will actually relax some of your muscles and slightly ease your pain.


This is yet another way to create an atmosphere that doctors and nurses, for the most part, want to be a part of.  And when they enjoy you, they'll spend more time focused on you.

Nurses know the best and dirtiest jokes, so learn one funny and unique joke and keep it in your pocket.

You never know when you might need it! 
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LISTEN TO YOUR GUT... AND THE REST OF YOUR BODY.


It's such a cliche, but it's important.  Listen to your body.

Earlier this week, my doctor asked me to describe my pain.  I said it was typical Crohn's, except...

I went on to describe that it wasn't cramping, it was throbbing.  It was more isolated to my lower right abdomen, not the mid abdomen.

Thanks to a thorough doc, we did a CT scan to find a totally different problem than what I thought I had.  But many docs just let a chronically ill patient call the shots.  If I had, I would have been in big trouble.

The difference between a cramp or a throbbing pain, the difference between one part of the belly versus another is a difference in diagnosis.

So pay attention.
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SAY MY NAME, SAY MY NAME...
From the moment you walk into the Emergency Room, are put on an ambulance or are admitted to the hospital, ask everyone their name and use it.  From the person registering you to the nurse who you're depending on to bring you pain medicine.

Use his or her name at least two times with every encounter.  This is a good way to distract yourself from the pain, and it's just one more way for doctors and the hospital staff to want to visit you.  "Hi, Sarah." "Busy night, Mike?" "Thanks, Erica. I appreciate it."

Doctors like to hear you call them doctor.  So humor them.  "Doctor Smith, I'm in a lot of pain." "Thanks, Doctor Johnson, I appreciate it."

If you've got a chronic illness I promise you'll start to notice a difference in the quality and speed of your care if you make a habit of saying everyone's name and using those manners.  Even if it's your first time in the ER for yourself or for a loved one, this is a way to be proactive about your stay.  You will feel a lot less like a victim.
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SPEAK UP!
Most doctors have a small amount of time to give any given patient.  If you have to use extra time so you can fully understand what's going on, then do it.

Ask as many questions as it takes to feel comfortable.  It's OK to say you don't understand and have your doctor explain it again.  It's your body.  Know what's going on inside it and what's going to be done to it.

If you've got a chronic condition, there's a good chance you’ll need to recount tests, procedures and surgeries many times to many doctors.

Even if you get a copy of your chart, you can’t always understand it and not everything is in it.  Ask questions.  Write down the answers if you have to.  Never let your doctor leave until you feel comfortable with whatever is going to happen next.  Never.
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MIND YOUR MANNERS...
When you're in an emergency situation, it's easy to forget a please or thank you.  But the more pain you have, the more important it is to be polite.

When you are miserable, often medication or even a warm blanket will make a huge difference.  You can't have either one until you meet with your nurse or doctor.   Give them a reason to WANT to visit you.  The faster it takes them to visit, the faster you'll get relief.

One way to do this is to say thank you and express appreciation as often as possible.  If your nurse, doctor or even the janitor has a choice of which patient they are going to see next, help make the choice for them.  Not only will you be seen sooner, your nurse or doc may stay with you a little longer, and that improves the quality of care and leads to a better diagnosis.

If you had to choose between giving medication to a rude jerk or to someone who tells you they appreciate you, who would you visit first?  Who would you give just a little extra time and attention to?

If you were the one wearing scrubs, what kind of a patient would you want?

Be that patient.
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WAIT UNTIL MORNING...

NEVER go to the ER at the end of a long holiday weekend. If it's Sunday night of Thanksgiving weekend or Memorial Day around 7pm, STAY HOME. You don't want to be in the waiting room for hours.

Everybody puts off getting checked out until the very end of the weekend.  And some people will do anything to keep from going back to work the next day.  Crying babies with ear aches, people with sprains from being outdoors, uncomfortable chairs, bad television... avoid hours and hours of this.

Instead, try to get comfortable or even get a little sleep. Wake up and go to the hospital at 6:00 a.m. There's a good chance you won't have to wait at all! 


HOSPITAL GOWNS...

Next time you go to the doctor or hospital, and you have to put on a hospital gown, make sure to ask for an extra one. The first one ties in the back... but tie it loosely. Use the second one as a bathrobe.

This will keep you a little warmer... and you won't have to worry about the whole world seeing your backside!