Chicago Recap

Chicago Recap

TL;DR Summary:

  • Everything looked normal. I’ll go back for more appointments and tests starting next week.
  • Overall, U of Chicago hospital staff did a great job taking care of me during the procedures.
View Wednesday morning from the hotel room. Trains + Lake Michigan!

View Wednesday morning from the hotel room. Trains + Lake Michigan!

The Majestic Star Casino and Hotel was a strange, sad place. It reminded me of an abandoned amusement park. Tuesday night I put a dollar into a slot machine and doubled my winnings on my first go. Normally I would have walked away with my loot but wanted to see what all the fun was about. I ended up breaking even without identifying the appeal.

Altogether, the hotel was a good place for colonoscopy prep, but that’s about all I can say for it. Their Wi-Fi was spotty and their toilet paper was rough. Not enough trains passed by the window to keep my company, but I liked listening to the sound of Lake Michigan four stories below.

Awesome view from the awesome waiting area at the hospital, pre-procedure.

Awesome view from the awesome waiting area at the hospital, pre-procedure.

The procedure was scheduled for 9:45 on Thursday; we were supposed to check in at 8:45. The check-in area was like an airport terminal. Comfy seating, big windows, and TV screens that listed each patient (identified by a secret code) and their status. So, Tom was able to watch where I was while he was waiting.

At 8:45 they took us downstairs to the 5th floor and put me in a prep room. I was impressed by how nice everyone was. There were two nurses helping with the prep. One said her husband has a long list of food allergies/sensitivities, some of which were the same as mine. I put on a gown and they started hooking me up to machines. The other nurse, a man named Victor, had trouble inserting the IV. He couldn’t get it in my forearm, so he tried the top of my hand. It HURT and I almost cried. He said I have small veins. That was the worst part of the day.

The patch on the researcher's lab coat. Tom took a picture for me!

The patch on the researcher’s lab coat. Tom took a picture for me!

A man from the Celiac Disease Center came in and asked if I would be willing to participate in a study to learn more about celiac disease. OF COURSE!!! I said. I signed papers agreeing to let them take 12 tissue samples (6 lower and 6 upper) and 2 vials of blood. They couldn’t get blood from the IV apparatus so they waited until after the procedure, when I was still out, and left me with a nasty bruise on my left arm.

Tom and I discussed how, in exchange for my body parts, they should have given me a sweatshirt. Or a T-shirt. Or at least a baseball cap.

The doctor came in to see how I was doing. I like her a lot. She is thoughtful and transparent and knows a lot about celiac disease. She explained what she thought about last week’s labs (elevated ANA and transglutaminase) and we talked a little about what to expect after the colonoscopy and endoscopy.

There was a lot of waiting. At one point I was encouraged to get up and give a urine sample for a pregnancy test, which is protocol before receiving general anesthesia. When I got back, the IV nurse set up the test. After a few minutes, he said, offhandedly, “Congratulations, you’re pregnant.”

My heart jumped into my throat and adrenaline shot through my body. Pregnancy is the LAST thing I need right now. “What?” I said.

“Haha, no, you’re probably not,” he said.

“THAT IS NOT A FUNNY JOKE,” I said.

“Haha, really?” he said.

It took a while for my heart rate to return to normal.

The pregnancy test was negative.

Eventually the anesthesiologist came in. Because I have a history of waking up during procedures, the doctor wanted to use general anesthesia to make sure I was comfortable. At first I did not like the anesthesiologist at all. She asked about food allergies and when I showed her the list, she said there was no way I could possibly avoid all those foods. “Don’t you eat baked goods? Or processed foods? Or go out to eat?” she said. Annoying and rude questions, since the food restrictions were why I was having the procedures in the first place. She explained that she needed to be extra careful, since a lot of her drugs are based on foods – mainly, foods I’m reactive to (like egg and avocado). Once she figured out a plan she was wonderful and friendly and sharp an funny. She explained everything she was going to give me very thoroughly while also making me laugh. I think she was just caught off-guard at first by my restrictions.

Then suddenly, around 11, it was time to go. Her assistant put something in my IV to make me relax and I said goodbye to Tom and they wheeled me into another room. There were a bunch of men in lab coats hanging around in the corner and the doctor explained they were there to learn, or observe, or something, and would it be OK for them to say? I said OK and she said, “You can say no,” so I said “No,” and they filed out of the room. They had me roll onto my side and I tried to take the endoscopy bite guard out of my mouth and they put it back in. The next thing I remembered, I was in recovery and Tom was back beside me.

I have no memory of asking for this picture, but Tom says I did. I was very, very happy about the water sponge.

I have no memory of asking for this picture, but Tom says I did. I was very, very happy about the water sponge.

I was so, so thirsty. I just wanted to sleep and drink water. The nurse wouldn’t let me have a cup of water, but gave Tom a blue sponge I could suck water out of. Also, Tom kept waking me up. He said later it was because they weren’t going to let me go home until I was alert, but I just really wanted to sleep. The anesthesiologist stopped in to make sure I hadn’t had any allergic reaction to the drugs she gave me. Nope! She was pleased. The GI doc stopped in and said that based on what she saw, my celiac is under control, but we need to wait for the results of the biopsy to confirm. That was good news, but I was more interested in the cup of ice water (with a straw!) the nurse let Tom hold for me to drink.

The biopsy results will be back early next week. The GI nurse will call me with the results and to set up appointments with the celiac dietitian (yay!) and for an abdominal ultrasound, since I still have constant mild-t0-moderate pain in my upper right quadrant (dating back to 2005). She also referred me to their food allergy specialist, who I already have an appointment with next Thursday.