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

Thursday, June 3, 2010

Drink! Drink! Drink!


I was still waking up.  I brushed my oily hair and put on my glasses.  Now that I finally got some rest, I was keenly aware of how long it had been since I’d had a shower or even brushed my teeth.

I hadn’t eaten in days, but the pain and exhaustion kept me from feeling hungry—unless that Hardee’s mushroom and swiss burger commercial came on again.  I wanted one so bad.

All the lights were off, but the winter sunshine filled my room at morning as the doctor stopped for his daily visit.   He directed all of his comments and questions at my mom.  But all she could do was politely nod.

I had had enough.  It was time people started filling me in on what was going on with me.

“I know I lost a lot of blood.  How much did I lose?” I asked the doctor.  I was weak, but my tone was assertive.

“We’re really not sure at this point,” he said as he looked at my mom.  “But yes, it was significant.”

What was up with that guy?  Look at me, you jerk.

“How many more blood transfusions do I need?” I asked.

“We’ll keep looking at the blood tests to find out for sure,” he said, eyes glancing around the room.  “I think at least one more pint.”

“How much could I have lost before I died?” I asked.

“Not too much more,” he said.

“Where’s all my blood coming from?” “What kind of tests do I have to do?” “Will the preps be as bad as yesterday?” “What are some of the possible things that could be going on?”

He answered each question with an answer that did me no good.  But at least he finally started making eye contact with me.

“We’re still looking for the source of the internal bleeding.” “We need to be able to get a better look at your digestive tract.” “Yes, there will be preps.” “I think we need to wait and see what the results look like before we start guessing.”

The doctor was clearly annoyed.  His two minutes with me were up, and I was bothering him.

Mom interrupted the conversation.  “Mary Sue, stop asking all those questions! Your doctor is very busy.”

I wasn’t satisfied with the answers, but I was pleased that I finally had the guts to speak up.  If I could talk to that 17-year-old girl, I’d tell her to keep right on asking questions. 

I would tell her, “Ask as many as it takes to feel comfortable.  You’ll need to recount this situation many times to many doctors and you need to know what’s happening, because 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.”

My doctor wrote a few more things in my chart, and told me he’d see me later.  About ten minutes later, a nurse came into the room with a Styrofoam cup.  I hate Styrofoam cups.

This was the third day in a row I had this nurse for the day shift.  When we first came to the hospital a few days ago, my parents and I were under the old-fashioned assumption that the quality of the doctor would dictate the quality of the hospital stay.  I was quickly learning why having a nurse or a team of nurses who like me and truly care about me would make hospital life much easier to live.

One of the first qualities I appreciated in my nurses was empathy.  She was shaking a bottle of white liquid. 
“This is called barium,” she said.  “It’s important to drink it all, even if it doesn’t taste very good.”

“But we’ve already cleaned out my insides,” I complained.

“I know, hon.  But you need this to make your insides light up so we can see what’s really going on in there,” she explained.  “This is strawberry-flavored.  Drink as much as you can, okay?”

The barium had the consistency of a milk shake.  I used a wide straw.  Strawberry flavored?  What’s the point?  Imagine blending up some metal, chalk, expired milk and two strawberries.  It was horrible.  I gagged.  My eyes teared up as I tried to swallow.  I tried again.  And again. 

I finally finished the cup.  I couldn’t get that horrible taste out of my mouth.  The nurse walked back into the room with a bigger cup and a bigger plastic bottle. 

“That was a great start, Mary!”

A great start?  I had to drink more of this nasty shit?    

"Hello, hello!"  The guy with the sweet Nikes had come to wheel me down to radiology.  He helped me onto the bed he brought and attached my IV pump and tubing to the side of it.  "And we're off!" he said as he whisked me out of the room.

“Don’t forget the cup!” my nurse said running after us down the hall.

Shit.  Why did she have to be so good at her job?

“You doing okay?” my chauffeur asked. 

“I guess.”

“Yeah, this test is hard on everybody,” he said with a laugh.  “You should see some of the older guys.  It takes them hours to drink that stuff.  They act like little kids.  I wish they could see how tough you kids are.”

“So what’s actually going to happen in there?” I asked.

He was moving fast and taking corners with ease.  The whole time he was explaining what was called a G.I. Series, sometimes called a small bowel series when the doc is only looking at the intestines.  Every 15 minutes or so I’d drink more of that awful barium.  In between each cup, they’d take a series of x-rays.  The barium would illuminate my insides so the doctors could see the shape of my stomach and intestines.  They were essentially going to watch my digestion in progress as the barium made its way through my system.  They would be able to see if there was any narrowing or blockages along the digestive tract, and hopefully find an abnormality that would explain my internal bleeding.

That dude knew what he was talking about.

“How come you’re the first person to explain what this is all about?”

“Your nurses are sweet, but they sure are busy,” he explained.  “And I’ve brought lots of people down for this, and I usually hear all about it on our way back to the room.  So far, you’re doing a great job.”

That guy was awesome.  I was so glad to have some of my energy back.  He was tall and skinny, walked fast in his Nikes and seemed to know everybody in the building.  He must have waved or said hello to eight people in my quick ride down to radiology.

“Ok, darlin’… I’ll see you soon,” he said as he pushed his foot down on the locks on the wheels of my bed.  He called out a woman’s name in radiology, waved to me again and was gone.

“You’re Mary?” asked the radiology tech.

“Yep.”

“Okay.  Right in here.”  I don’t remember what the tech looked like, only that she seemed homely and was too quiet compared to my transportation guy.  For a little thing, she was really strong.  As I put my arm around her shoulder, she let me put most of my weight on her as we did a sort of three-legged race walk to the long table.  She helped me stretch onto my back.  Every part of my body hurt.

“Try not to move, okay?  The radiologist will be in soon.”

Any room in the hospital that has a big machine is going to be cold.  This machine was gigantic.  I was freezing.  The light mood of my Nike shoes guy turned gloomy.

It took the radiologist and his two assistants about ten minutes to put on the protective vests, to get the machine ready and to get started.

This was the first time I’d ever seen this guy in my life, and he didn’t introduce himself.  He just talked in low tones to his assistants.  I didn't know that having a friendly and outgoing radiologist is a treat and very rare.

He reached for the machine above me.  There were handles on either side of what looked like a huge, metallic square hose.  The exterior of it looked like an accordion as he moved it up and down and back and forth.  It wasn’t actually a hose- at the end of it, where the two handles were, was glass.  Behind the glass was the x-ray camera.


As he moved the camera over my stomach, he flipped on a light to project a little rectangle onto my hospital gown.  He was moving this great big machine an inch to the left, then up…then the light would turn off.  He’d turn it on and keep maneuvering until it was just where he wanted it.  Then he took some pictures.

This wasn’t so bad.  Drinking that barium was worse than the test itself... until his assistant handed him a paddle with a little ball attached to the head. 

“I’m going to put pressure on your abdomen now.  It may be uncomfortable,” he said without looking at me.

Uncomfortable?  Yeah, I screamed out loud in discomfort.  Beware of the word uncomfortable when anyone in the medical profession uses it.  Uncomfortable usually means horribly painful or downright disgusting.  This hurt like hell.  I felt like a dying animal as I was poked and prodded.  I let out painful moans that were ignored.

Five minutes later he left the room.  The homely assistant helped me sit up.  She checked my IV pump and brought me a wet washcloth.  Then she gave me that stupid cup.

“Try to drink all of this by the time they come back in a few minutes.”

I tried to guzzle it down, but I kept gagging.

“What seems to work for most people is just drinking as much as you can.  When you start to gag, just bite down on the wet washcloth.  Just keep trying to drink.”

Drink until you gag.  Sounds like a frat house hazing.

The drinking and the x-rays continued for about an hour and a half.  I hurt from that paddle, I was bloated and I just wanted to go back to my room where the nice nurses would have new sheets and blankets straight from the warmer waiting for me.

My speedy delivery guy was back and helped me onto the bed on wheels.  I asked him to drive a little slower.  I felt like I just drank a gallon of lead. I practically did.

“That barium is just the worst, isn’t it?”  he said while making a clear effort to slowly move me down the hall and onto the elevator.

He pushed me through the double doors into the Peds unit. 

“You did great,” my nurse said with a big smile.  I was glad to be a kid at that moment.  A month later and I would have been mixed in with all the whiny adults and the run-down nurses who don’t talk to you like you’re a precious child. 

“When will we know what’s wrong?” I asked as she was moving my IV pump and pole back in place next to my hospital bed.

“Hopefully your doctor will take a look at the film and let us know when he stops by this afternoon.”

This was about to be the first of many, many tests that showed my digestive system looking perfectly healthy while I was doubled over in pain and losing blood.  Next on the list of tests- putting a scope with a camera into the top and bottom of my digestive tracts.  An endoscopy and a colonoscopy would require cleaning out all that barium.  Big surprise.


I was finally back in bed, and I turned on the TV just in time to see the Hardee's commercial for their mushroom and swiss burger.

I was full of barium, but I knew I could eat five of those burgers.  I was sick of ice chips.  And I was becoming more and more annoyed.  I could handle most of this hospital stuff if I knew what the hell was wrong with me.  Even a total guess would be great.  Then again, when I got my guess, it was one of the stupidest things I'd ever heard.  And my doctor was serious.

No comments:

Post a Comment