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

Tuesday, June 22, 2010

I INCYST... Part 3


(I apologize for the big break in between posts.  My husband and I took a much needed vacation to northern Minnesota.  Now that we're back to our normal routines, I can finally get back to the blog.)
After I had some pain medication, I had an hour and a half to drink a few quarts of contrast.  Compared to barium, it’s nothing.  It still makes you scrunch up your face after taking several gulps, but there’s no gagging involved.
As I drank, the time passed and the shifts all changed.  Lina had worked 7 p.m. to 7 a.m., so I had a different nurse every half hour or so poke her head in my room.  It was getting closer and closer to 9:00 a.m., and I needed to get to work.
I took the bag of fluids and walked out to the nurses’ station. 
“I don’t mean to sound rude,” I said to a group of two men and a woman.  “But I really need to get a CT scan so I can leave a.s.a.p.”
“Let me see what I can do,” one of the nurses said as he looked at a computer screen.  “You know what?  I think we could send her right now,” he said to a fellow nurse sitting next to him and nodding her head.
My wheelchair soon arrived with a quiet, but fast guy to bring me to the room with the huge machine in it.  There are usually a few people involved in administering a CT Scan, and they’re usually behind a wall looking at computer screens or through the window at me.



This is a photo of what it looks like (I took the pic from a hospital in the UK's website).  

I stretched out on my back on the bench, and a nurse pushed a syringe of iodine contrast into my IV.  That causes a tremendous hot flash and you almost feel nauseous.  The feeling only lasts a few seconds.
Next, the machine ordered me to hold my breath as the bench moved through the hole in the machine.  “You may breathe,” the machine instructed.  After going back and forth through the huge hole, the test was complete.  I was helped to my feet and back into the wheelchair.  I was back in my E.R. room minutes later.
It was after 9:00 now.  I called the newsroom to talk with the dayside producer.  I had already sent him several texts and talked with the Sunday morning producer.
I told the dayside producer I’d be in shortly.  “Are you sure? Most people don’t go to work after being in the hospital,” he half-joked.
“Oh, I’ll be fine,” I said.  I was sure this was just another Crohn’s flare.  I’d rather work and be distracted by police scanners, endless emails and phone calls and executing the plans for the day than sit on the couch completely aware of the pain in my abdomen.
After going over story ideas for the reporters and figuring out where to send the morning photographers, I hung up, and started changing from my hospital gown to my jeans and T-shirt.  A new doctor walked into the room.
“Hi, I’m Dr. Jacobson,” he said.  “I haven’t looked at the test results yet, and your nurse says you’re leaving?”
“Yes.  I need to get to work,” I explained. 
“Where do you work?”
“I work for FOX 9 news.  I do a lot of behind the scenes stuff and get our day going,” I said.  And like most Minnesotans, the doctor was eager to know more about my job.  People here are fascinated with people who work for TV news.  They love when they learn Nate works at WCCO and I work at KMSP.  Nate produces the weekday morning news, and I am involved with planning for weekends and some nights, so we’re not really in competition with each other, but people still get a kick out of us.
Dr. Jacobson said if I thought I could go, then he’d give me a call with the results. 
So with no diagnosis, pain medicine wearing off and a bottle with about eight pain pills in it, Nate and I went home.  I changed clothes, Nate made me a lunch and then my phone rang.
“Hello?”
“Is Mary there?”
“That’s me.”
“Mary, it’s Dr. Jacobson from the E.R.  I just took a look at the result of the CT Scan.”
“Did it show any abnormalities?”
“It did.  But this isn’t Crohn’s related,” he said.  “It appears you have a ruptured cyst on your ovary.”
If it’s not Crohn’s, it’s foreign.  I had no idea if that was a horrible thing or a no big deal thing. 
“I think your pain is being caused by some internal bleeding we saw on your scan,” he said.
He told me I’d be “uncomfortable” for a few days, but then I’d be fine.  The conversation lasted about two minutes.
Nate looked at me with anxious eyes.  “Well?”
“A ruptured cyst.  Huh.”
Neither one of us knew what to make of the situation, so I just grabbed the lunch Nate made for me and I jumped in the car and headed to work.
The pain came and went as I organized the day planner and contacted our reporters and photographers.  Our nightside assignment editor called in sick, so I stayed a little longer than I anticipated. 
I didn’t have a moment to research ovarian cysts at work, but when I got home you’d think the first thing I’d do would be to get on the computer and figure out what was happening to my body.  I only had a tiny explanation.
But I didn’t.  The doctor told me this wasn’t uncommon for women and that it would go away.  Fine.  I didn’t call my OB/GYN on Monday, and I went to work Monday afternoon as if everything was back to normal.
By 8:00 p.m., I felt like I was having menstrual cramps, typical Crohn’s pain and a throbbing pain on my lower right abdomen.  Pain medicine wasn’t doing anything to help.
By 9:00, tears were forming.  I HATE crying in front of people- especially at work.  So when I heard “plane on fire” on the scanners, I was distracted making calls to every county dispatch center I could call to figure out what the heck I heard.  I re-routed a crew to White Bear Lake, where I thought the call had come from.
I still say I heard “plane on fire” two times that night, but there was no plane and no fire.  At least I was distracted until the 10 p.m. news was finished.
When I got home, Nate had to immediately take the car so he could go to work.  He produces the 6:00 a.m. news, and he gets to work by 11:00 p.m.  I had about two to three minutes to hug him at the door while I cried on his shoulder.  He wanted to stay with me, but I’d been through worse by myself in the past, and I wasn’t about to let either of us miss work because I was in pain.

I felt so stupid.  Here I was, giving advice to people about making their hospital and doctor visits better and I wasn't taking my own advice.  I didn't listen to my body, I didn't wait to have the doctor go into more of a description of the problem.  So there I was.  In pain, with few answers and all alone... just like 15 years ago.  This time, it was my fault.

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