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

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.

Wednesday, May 26, 2010

A Day of Firsts




My dad's poofy winter coat was on a ledge by the window, and all of my clothes and shoes were in a big plastic bag in the closet.


Dad sat quietly in a chair next to me when an older nurse came in. This was my first shift change. I would get very used to them. Every eight hours a new nurse becomes yours for 1/3 of the day, mostly without warning.


The new nurse was overweight, probably in her late 50s, wearing make-up and bright lipstick. She had a little Christmas tree pinned to her name badge. Her hair was half-up, half-down… though it looked as worn out as she would be in about an hour. She was pleasant as she started to explain that blood tests showed my “blood count” was low. That’s why I was feeling so faint. Whatever that meant…


My dad probably caught one or two words, but he didn’t ask any questions. I didn’t know what to ask. I could explain how cells divide, but anatomy classes weren’t offered at my public high school. And sex ed doesn’t count.


But that’s the point. I should have asked questions because I didn’t know what anything meant. If I were in that teenager’s body today, I’d be asking, “What does that mean?” “Why did that happen?” “What do we do to fix it?” “Where the hell is the doctor?”


But for now Pops and I just both did as we were raised to do. We just sat there and didn’t say anything. We waited for her to check my vitals, which I quickly learned meant taking my temperature, blood pressure and pulse. She said my blood pressure out loud; 90-something over something. She could have said any number, I didn’t know what it meant.


She was furiously writing in a binder. I was so curious. But I didn’t say anything. We just sat there looking at her as she wrote. She closed my file and looked up with a smile.


“We’re going to keep her overnight, and the doctor will see you in the morning.”


My dad just nodded.


A little while later my mom walked into the room. It was dark outside and I hadn’t seen her all day. All the kids were at home and she was happy to report they all volunteered to help with dishes.


“So what did they tell you?” she asked.


My dad looked at me, so I said, “My blood count is low and they’ll have to keep me overnight.”


“Oh thank God, that’s all it is,” my mom said. Moms are supposed to know everything, so I figured at least one of us understood what was wrong. She took off her winter coat to reveal a Christmas sweater. I don’t remember what it looked like, I just remember it was a Christmas sweater.


She came over to the bed and stroked my hair. At the time I didn’t realize she had put on lipstick and blush, and she smelled of whatever perfume scent she wore… nothing memorable except that it was there.


Women are strange. I often wonder why I like being a woman when I don’t really understand them. Sure, I had older brothers and everybody called me a tomboy. But in hindsight, I think I wasn't so much boyish as I was not girlish. Women just didn't make sense- not girls in high school, not teachers and not my mom.


Like many women, I suspect, after hearing her daughter was unconscious and had been admitted to the hospital, my mom changed clothes, did her make-up, fixed her hair and made sure to smell nice. She was sure that household chores would be done. Then she came to the hospital.


But I wasn’t aware of all that at the time, not on a conscious level, anyway. After 24 hours of pain and an explanation that explained nothing, I had Mom and Dad’s full attention. Everyone here was caring about me. Everybody. I felt important, and I never felt like that before.


My mom just kept stroking my hair saying everything would be alright. “We’ll just take you home tomorrow… you did this at a good time you know,” she half-joked. “We met our insurance deductible for the year and this is going be covered,” she said with a smile. I was so close to being an adult, but I felt like such a kid. I had no idea what she was talking about.


My parents were absolutely convinced I would be going home the next day. My dad overheard me explaining some details to doctors or nurses, but they really had no idea what had happened. They didn't know there was blood. Mom didn't even know that I fainted at the doctor's office. I was a kid. I just assumed my mom knew everything- whether I told her or not.


The nurse never said I was going home. She said I was staying overnight, and that we'd talk to the doctor in the morning. I lost consciousness, lost a lot of blood and was in the worst pain I’d ever been in, and no one thought to ask why, or how long I would be there or what they were doing to fix it or anything. None of us even thought about it. We really expected to have a doctor explain everything in the morning.


For now I felt comfortable. My dad had held my hand a little, which is his way of saying everything is going to be OK.


Visiting hours were over, and we didn't question that they had to leave. Mom put on her thick coat, brushed her hand across my forehead and gave me a kiss.


She told me I’d go home the next day and that everything would be fine. My stomach still ached quite a bit, but I just felt better. It felt like the grown ups had things under control.


I waved good bye and pulled the scratchy sheet and thin, sterile blanket up to my chin and closed my eyes… only to open them later in the night with horrible horrible pain. And I couldn’t move.