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
Showing posts with label pediatric gastroenterology. Show all posts
Showing posts with label pediatric gastroenterology. Show all posts

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.

Wednesday, June 2, 2010

One Mother of a Night


My parents finally arrived.  I have no idea how long it took them to get to the hospital, but with the drive, it was probably an hour or so. 

I felt Mom’s dry, scratchy hands on my face.  “How’s my little Mary Sue?” she asked as she stroked the hair around my face.  My middle name is Suzanne, but when I was a kid, everybody called me Mary Sue.  Now that I was in high school, only my mom and some of the moms from childhood called me that.

“I’m OK,” I said quietly.  I had been lightly sleeping.  I was on my second pint of blood.

Dad walked in and immediately turned on the bright overhead lights.  “You OK?” he asked loudly.  I smiled and nodded. 

“Patrick! Shhh!” my mom said, scolding him and motioning him to turn the bright light off. 

Just to my left about three feet was the door to the bathroom.  Juvenile wallpaper decorated the room in the pediatrics department. In front of me was a grainy TV that hung from the ceiling and had cable TV- a luxury considering we only had the local channels at home.

The remote was like a radio.  It had one button for the TV and one to call the nurse.  You could turn it on, go forward through the channels, then turn it off.  That was annoying, and so was the sound.  There wasn’t closed captioning and my dad couldn’t hear a thing.

This is the version you'd find today... it actually lets you turn the channels up or down!


So there we were.  The three of us just sat there as I was given blood.  We just sort of stared at the TV not saying anything.

I was still exhausted from losing so much blood, but with every blood transfusion, I was slowly feeling the return of energy.

My brain started working, and I started considering my plight.  And I started to wonder why my parents were content with not knowing what was happening.

As I look back, I think Pops might have been a little embarrassed to ask questions.  He couldn’t hear well, and often waited for Mom or one the kids to explain what he missed.  He didn’t want to seem ignorant, either.  But none of us knew a damn thing… not even the doctors. 

Mom grew up in the 1940s and 1950s.  Like most good Catholics, she didn’t question authority.  Over time I’ve learned that you don’t have to be a good Catholic to feel like the doctor is omniscient and shouldn’t be questioned.  Most people never question a doctor or nurse.  It’s called a second opinion because that’s what it is… an opinion.  But for some reason, many of us think a doctor is always correct when making a diagnosis or deciding on how to treat a certain condition.    

Under the TV was a small, wide table- it kind of looked like a coffee table.  That’s where the Christmas tree decoration stood.  And in front of the table was Mom’s purse and an overnight bag, though I thought they had just brought me some extra stuff- like magazines or nail polish or something.

“Is this blood transfusion safe?” Mom wondered out loud.

“Mom, they test for AIDS and all kinds of diseases when you give blood,” I said.  “The Red Cross ends up throwing away a lot of blood because they are very careful.”

“I’m so worried about you,” Mom said.

“Thanks, Mom.”

“Are you OK?  I just feel so terrible,” Mom said.  It took my mom a long time to accept that having three kids with Crohn’s Disease wasn’t her fault (two brothers were diagnosed soon after I was).

“I’m fine.  This blood is a little uncomfortable.”  It was.  After hours of blood pumping into me from the same site near my shoulder, my whole arm ached- right down to the fingers.

I fiddled with the tubing, but it didn’t help.  When I looked back up at my parents, Mom was crying and Dad had his arm around her while giving me little smile. 

What’s with the drama, I wondered. 

My mom suddenly sat up straight and wiped her tears.  “I’m going to stay.  Mamma’s going to stay with you tonight so you don’t have to be scared,” she said to me.

No.  No, no, no.  Please, God, no.

“No, you don’t have to,” I said.  “I’ll fall asleep fast.  Why don’t you just come back really early in the morning?”  I asked… one suggestion after another.   “You’ll be bored.  Wouldn’t you rather go home, shower, get some sleep and then come back?”

Nope.  She felt guilty for going to that damn “party” while I lost all that blood.  She was going to make up for it by sleeping on a cot next to her daughter.  As she turned toward her overnight bag, I realized not only did they not bring a book or nail polish, I had to endure a sleepover with my worried mom.  I pleaded with my eyes and shook my head violently no to my dad.  I even mouthed, “NO!”  He looked down and shook his head.  His body language said, “There’s nothing I can do about it.  The woman’s got her mind made up, and I don’t know what else to do.”

“Well, you better go.  The kids are probably tearing the place apart,” Mom said to Dad. 

I was angry with my dad for not saying anything, but I was upset that I didn’t say anything, either.  I was so sick of just accepting the decisions of all the adults around me.

My stomach hurt so much.  I lost a LOT of blood, and we didn’t know why.  I was doing a good job of reading fashion magazines and watching TV to get my mind off things.  We were only allowed to watch shows like “The Cosby Show” or “Little House on the Prairie.”  We watched the news and a little PBS, but that was it.  Even with its grainy picture and terrible sound, cable was the best thing about that hospital.

The nurses had to be a close second, though.  Pediatrics nurses always talk in such soothing tones, even to a teenager and her parents.  Every one of them was sweet.  Some were really, really sweet.  I thanked God for those nurses that night.

As my mom struggled to unfold her cot and get ready for bed, she was slowly losing it.  She was upset with herself, with my dad, with me, with an interrupted Christmas, with doctors who didn’t know anything, with that stupid cot… I could feel a storm brewing.

I was right.  First she was upset because she couldn’t sleep with the TV on.  So I turned it off.  One or two complaints launched a litany of troubles.  Her twin sister is awful.  Her brother is awful.  Her mother is awful.  She does everything for everybody.  Nobody does anything for her.

My night nurse checked in on us more than once.  Mom said in a very upset, but trying-to-be sweet voice, “Oh yes, it’s just been a difficult day.”

“Oh sure, I understand,” said the nurse.  And she was gone. 

Dammit!  I was hoping she'd say something useful.  “We’ve got sick kids and babies so shut up, you crazy lady!!” 

Man, that was one of the longest nights of my life.  You know, from the time those nurses were calling my parents to the time my mom was bitching in the dark to the time I got to sleep, I bet only three hours elapsed.  It felt like two separate days full of memories.  The anger, outrage, fear and helplessness It was all just festering inside of me.  I was too weak to get into a fight because I was too weak to win.

I eventually fell asleep and woke up to a shooting pain in my arm as a third pint of blood was making its way through the IV and into a vein.

It was around 8:30a.m. on the 29th.  I woke up to see Mom scurrying around the cot, folding a shirt, putting a comb through her hair, putting on lipstick…. the normal things a mother does when her daughter is the one suffering on the other side of the room. 

I told this story to a friend of mine once.  She was my age, but she had two children.  She told me that when I become a mom some day, I will be able to see everything from Mom’s point of view.  My friend said as badly as I hurt physically was how badly my mom hurt emotionally.  I don’t have children yet, but as I’ve grown older and become a wife, I’ve gained some perspective and understanding.

At the time, I hated her.  It was easy to be so angry with her.  I was going on day four of dealing with pain and no answers, but who was I supposed to be angry with for that?  It was much easier to hate Mom.

I was sick of not having answers.  I was sick of letting the doctor not giving even a guess as to what was happening.  I don’t know if it was my mom, my own frustrations, a boost in energy from replenishing my blood supply or the realization the night before that I had to start sticking up for myself, but when the doctor came into the room that morning, I was not the same patient I was the day before.

“Good morning,” he said while flipping through the pages of my ever-growing chart.  “How are we doing today?”

“My arm hurts.”

He didn’t say anything.

“From all the blood…”

Nothing.

“Maybe we can move this IV to another vein and give this arm a rest?”

“Sure, we could do that,” the doc said without looking up.  He paused, closed the chart and looked at my mom.  “We didn’t notice anything abnormal on yesterday’s x-ray.  Once we can finally see the results of today’s tests, we’ll have a good understanding as to what’s causing all of this.”

My mom just gave him a worried look and nodded.

I broke my silence.  From that moment on, I’d never be silent again. 

Monday, May 31, 2010

Guts and Blood



It was now December 28th, and the holidays were still being celebrated in northeast Wisconsin.  All the kids were on Christmas break, and we didn’t have Facebook or cell phones.  So my only visitors were my parents. 

When the nurse told us that I wouldn’t be having any tests done that day, but that we’d wait until the 29th, there wasn’t much to be done.  My insides were cleaned out, I was sucking on ice chips, and no one would be visiting because no one outside the family even knew I was there.

Mom and Dad were antsy.     

I heard them outside the door talking about my Aunt Mickey’s Christmas dinner that night.  My mom’s twin sister is a nun, but she was a great baseball player as a kid, so instead of calling her Sister Elise, we called her Sister Mick or Aunt Mickey, after Mickey Mantle.   My brothers and sisters, along with Mom’s younger brother, Danny, and his wife, would go to Aunt Mickey’s house every year for her Christmas supper.  We’d check out her decorations and the gifts she got from her students while doing our best to be polite. 

Mom was a nun for a few years before she met Dad, and she was still a good Catholic.  The obligation to visit her sister that night was giving her a serious guilt trip.  I could hear her crying and saying, “We can’t just leave her all alone while we go to a party.”

A party?  That’s not what I would call it.

“You guys should go to Aunt Mickey’s,” I said with a yawn.

“Oh, no…”

“Why not?  It’s just me, and I’m just going to watch TV.  We’re not even doing any tests until tomorrow.”

“Do you think you’d be OK?”

“Yeah.  I know how to ask for more ice chips,” I said.

When conversations are brief, and especially when they are in quiet and low tones, it’s extremely difficult for my father to hear or understand them.  So he often finds himself sort of standing behind the discussion, not knowing what’s being decided.

My mom kissed me on the forehead and said they’d see me soon.  Dad smiled at me and waved good-bye as they walked out, about to drive 40 miles to Aunt Mickey's house.  They could have been going to the cafeteria, for all Dad knew.

An hour or two after my parents left, the TV was on, but I wasn’t watching it.  I was so tired, and I started to hurt again.  I hurt so much.  I remember feeling guilty about hitting the red emergency button for the nurses.  I felt like I was bothering them.

“Can I help you?” the little speaker blared.

“Yes.  Can you send a nurse?” I could barely breathe out.

“A nurse?  Why?”

“Please help,” I grunted.

Two nurses quickly came into the room as if they were ballet dancers in orthopedic shoes.  One grabbed a bed pan and the other lightly lifted my head and helped to turn me.  I know I told them I needed to go to the bathroom and that I was in a ton of pain, but I don’t actually remember saying the words.

They were like fairies.  In my memory, their movements were quick, but graceful, and they both smiled.  I know one of them wiped my ass again, but I don’t remember it happening, and I don’t remember being grossed out with the situation or grossed out at my own body. 

I was so drowsy that I didn’t realize how much liquid was coming out of my body.  Over and over, the two nurses would turn me on my side, give me the same soft instructions, and place a bed pan under me, only to remove it a few minutes later.

The nurse with the curly light brown hair came back into the room.  It was dark, and my TV wasn’t on.  It felt like midnight.  It was only around 8 or 9. 

“Mary,” she whispered.

I opened my eyes, but I couldn’t say anything.  I was too exhausted.

“Mary, you’ve lost some more blood, hon,” the pretty nurse said as she placed her hand on my arm.

She told me I needed to have a blood transfusion.  She said I needed my parents’ permission because I wasn’t an adult yet.  I was in a daze.  She wasn't making sense.

“How much blood did I lose?” I asked.

“We’re not quite sure,” she said. 

“How much blood are you giving me?”

“Each transfusion will give you about a pint of blood, and the doctor has ordered at least a few pints.”

I didn’t realize my body should have about nine pints of blood flowing through it.  If I had, I would also have realized I lost about half my blood supply.

“Am I going to die or something?” I didn’t really think I was going to die.

“We just need to get your blood levels way up if we’re going to get those tests done,” she said confidently, not telling me that yes, I could die without the blood.

Another nurse, a little older, but still full of energy, walked in and said, “Mary, we’ve tried a few phone numbers.  Do you have any idea where your parents might be?  We need to get their permission over the phone before we give you any blood.”

I sort of shrugged as I closed my eyes.  I just wanted to sleep.

She put her hand on my arm and said, “Mary, this is serious.  It’s important we talk to them.”

I remember becoming angry in my confused state.  I did tell my parents to leave, but I wanted them to fight for me.  Their teenage daughter lost all kinds of blood, had to take harsh laxatives all day, couldn’t enjoy a minute of her Christmas break, and was most of all… lonely. 

And they were off having some dumb noodle and cheese and corn casserole with sugar cookies and chocolates, admiring some dumb green and red artsy craftsy thing on the wall or a new afghan that someone from the convent had knitted. 

They should have known better than to leave me.  But why would they?  I was the first of their seven kids to ever stay in the hospital.  They were learning how all of this worked, too. 

It was difficult to grasp.  For the first time in my life, my parents disappointed me.  For the first time, they didn’t have the answers.  For the first time, I had to start taking some responsibility for what was happening to me. 



I was just a kid when I arrived at that hospital, but in one moment I became an adult.
Everybody was listed in the phone book then, so it wasn’t long before a red bag hung next to me, and someone else’s blood was slowly pumped into me.

Having just given blood a few weeks ago, I understood I wasn’t at risk for contracting a disease or getting HIV.   Even if I was concerned, I was too light-headed to care.  I just wanted to sleep, but the nurses insisted on waking me up every ten minutes.  I figured they didn’t want me to fade into a coma or something, but I just wanted to sleep so badly.

Of everything I could have been feeling, I was actually annoyed while two women were doing their best to save my life. 

Thursday, May 27, 2010

Letting it All Out

My parents seemed relieved that I was OK. I didn’t know why, because I wasn’t OK. They weren’t there last night. They didn’t have their asses wiped by a stranger.


I knew something was wrong. But what was I supposed to do? Besides, they were going to do tests, so my questions would certainly be answered anyway. So I let everyone else just tell me what to do and how to feel.

Everything was not OK. I was confused, but I didn’t say anything. And it’s not like me to hold my tongue. Not at all. But how could I bend the rules when I didn’t know what they were? It seemed like my parents understood how this whole hospital thing worked, and I felt comfortable in their adhering this weird code of conduct.


In order to do get a good look at the gastrointestinal, or G.I., tract, ideally everything not actually part of my body had to be cleaned out. And flushing your digestive system is the worst part of any test.


Still, I’m always amazed at how nurses and doctors can be so straight-faced and matter-of-fact about the whole thing. It doesn’t matter if it’s a posh G.I. clinic, a hospital outpatient procedure or even, this, my first inpatient experience. It’s all the same.


“You drink this until it’s gone.”


“It might be a little hard to get down, but just keep at it.”


“It’s very important or we can run the tests.”


I was so thirsty. I had IV fluids, but I wasn’t allowed to drink anything. Every hour or so I was allowed to suck on a wet washcloth.


So when a big cup was put in front of me and now I was asked to drink until it was gone, I didn’t think that sounded too bad. I’ve never been so wrong.


I was a smart kid. When I was told they had to make sure my digestive system was free and clear before putting me in front of some machine, how could I not understand what that meant?


I’ve done dozens and dozens of these tests over the years, so I don’t remember what the rocket fuel laxative of choice was, but I remember it was disgusting. I started to guzzle this nasty drink, and I started to gag.


“Oh, that happens sometimes,” the nurse said. “Just keep working on it.” I felt like I should apologize for nearly throwing up on myself.


It’s been the same for 15 years. I down some sort of super strong laxative concoction, try like hell to get the taste out of my mouth, and I wait for the “preps” to "prepare" me for the test.


Prepping is like having the flu or food poisoning- where something is not agreeing with your system and you feel like your intestines have all decided to make balloon animals out of themselves. The only way of releasing the pain is, of course, to head to the bathroom.


I was given some pain medication and I was able to go to and from the bathroom... with help from Dad or a nearby nurse. That doesn’t mean the embarrassment would end. This was just the beginning.


I was back and forth to the bathroom, letting it all out. Nurses and cleaning staff were constantly in and out of the room, and my parents were in the room the whole time. I was a self-conscious teenager doing something super gross surrounded by a group of adults totally unfazed by what was happening.


But what could I say?


“Dad, I feel anxious because the room stinks and it’s all my fault for listening to doctor’s instructions and drinking that terrible 'soda' and letting my insides pour into the toilet.”


But that’s how a kid feels. I feel sorry for the 17-year-old me sometimes. She didn’t know any better. She didn’t know how anything.


I wasn’t totally cleaned out when someone wearing blue scrubs and expensive running shoes walked into my room with authority, unhooked and re-hooked tubing, unlocked the wheels on my bed and rolled me out of the room.


He was just some guy whose whole job was wheeling people from their rooms to radiology or surgery or wherever. I don’t remember what he looked like. I just remember those fierce Nikes.


He didn’t say a word. Nobody said anything. It turns out a nurse told my parents I was getting an x-ray. Just a regular x-ray of my abdomen. This wasn’t actually the test. Nobody told me. It was so damn quiet all the time.


After a couple pictures with the x-ray machine, and I was on my way back to my room. Easy as that.


It was getting late into the afternoon by the time the doctor came to my room to tell me my x-ray looked normal, but that it was too late in the day to actually conduct a real test, so we’d all just wait until tomorrow.


My parents had gone home for a while. I was watching something mind-numbing on TV, and drifting in and out of sleep, but it was barely 5:00 p.m. As winter darkness crept into my room, the pain crept into my gut again.


Within minutes I was reliving last night all over again. Only this time the relieved words “it’s dark-colored” were replaced with the concerned words “it’s bright red.” Good thing I was in a hospital, or I might be dead.

The Embarrassing Night

The pain woke me up a little before midnight. “Here we go again,” I thought. I instinctively began moving into the fetal position, but as turned on my side, it felt like my gut might rupture.


It was worse than at home the night before. I pictured big daggers waiting on either side of me. Every time I turned left or right I was stabbed over and over with pain. I screamed out, and screaming hurt, too. I hit the little red button and prayed that my overweight nurse could get to me quickly.


I had to go to the bathroom so badly. I was so embarrassed. So embarrassed. What was I going to tell the nurse?


“I have the runs and need help going to the bathroom!” No way.


I don’t know what was worse- telling the nurse I had diarrhea or actually having painful diarrhea. I imagined that I’d tell the nurse, and she’d walk out to the nurses’ station and laugh it up with the rest of the overnight staff.


The door opened and a big light from the insanely fluorescent hallway came into the room, along with that nurse with the nice make-up. I had no idea how to tell her.


“Um, my stomach really hurts a lot,” I mumbled.


“Ok, we’ll get you something for the pain, honey.” She started to walked away.


“Um, nurse? Could you come back?”


“What is it?”


“I really have to go to the bathroom, but I can’t get up.” I closed my eyes so I wouldn’t see her laugh at me.


“You can’t get out of bed?” she asked, not laughing, and with a lot of concern. “Can you move at all?”


“Not really. It hurts too much.”


“I’ll be right back,” she said.


I heard people talk about bed pans before, but I never knew what they were. I didn’t even know what was in her hand until the nurse said it out loud.


“I’m putting this under your bottom,” she said matter-of-factly and sweetly at the same time. “If you have to go, you just go. I’ll be right outside. Just use your call button.”


It must have taken me ten minutes. I was so embarrassed. I could not believe that I was going to poop in this bowl and this nice woman was going to take it away.


Oh my God, she was going to have to wipe me because I could not move. Oh, God. I couldn’t have someone wiping my ass. My mind was frantic as I clenched every muscle in my body.


But my body wouldn’t let me hold it in any longer. I let it go, and I felt so ashamed. I didn’t move for about a minute. I felt disgusting and I was so scared about the wiping thing.


I finally hit the red button and the nurse came back in a few seconds later.


“All done, hon?”


“Yes,” I barely whispered.


“Ok, hold on," she said and she pushed against my body. "Here we go.”


She grabbed the bed pan and placed it on a cart. Then pushed me on my side. I yelped in pain.


“Just hang tight, kiddo.”


And there she was, wiping my ass with some damp cloths. I started to cry. I hurt so much, and I was disgusted with myself.


Not seeing my tears in the dark room, she pulled me back and said, “All set. Now try to get some rest.”


And that was that.


An hour or so later, I woke up again. Again, I had shooting pain. Walking in from the fluorescent light in the hall was a different nurse. Shift change.


She was younger and bouncier. Her hair was pulled back in a ponytail. Did I have to go through this all over again with somebody new?


“Hi, what's going on?" she asked as she fiddled with some IV tubing.


I was not going to torture myself, so I just said it. “I can’t move and I have to go to the bathroom.”


“OK, let’s do the bed pan again, alright?”


I didn’t realize the woman read my chart and talked to the older nurse before taking over the shift. I was realizing that I didn’t really realize anything at all.


As the ponytail nurse took the bedpan and cleaned me up, she kept glancing over at that bed pan. What was she looking at? I was exhausted from being in so pain. I was emotionally drained, and I didn’t have the energy to be embarrassed.


“I’m going to be back in to check on you in just a minute,” she said.


I heard quiet talking in the hall. More than one person was talking, and they were talking about me. I remember hearing, “It’s dark-colored.”


I fell asleep again and woke up to a room filled with morning light, my parents, another new nurse and a doctor. They had started talking before I woke up. Did they know what happened?


The doctor didn't introduce himself to me. I didn't notice. I was a kid.


“She lost some blood last night,” he said. “I think that’s what’s caused her low blood count. But the blood was very dark colored, and that means it’s ‘old blood,’ meaning that whatever was happening has stopped, and she should be OK. But to be safe, we’re going to run some tests.”


As I would understand for the next 15 years, if it’s a digestive problem, "running some tests" is like having your body get hijacked by aliens. If all went well, I was would have my first hijacking that afternoon.