Had my first University of Chicago appointment

Just want to let you know how it went.

My gastroenterologist told me from the beginning that I should get myself established at the University of Chicago Medicine hospital for a third opinion and to have them co-manage my condition with him. I finally had my appointment yesterday. I should mention they were able to schedule me quickly, it's just that I put it off for a while. I'm from the southwest suburbs and am not a city girl at all, so my dad and I took the train and an uber ride to get there. My uncle and cousins, who were visiting us for Easter, also came with so they could go sight-seeing downtown. My butt had hardly hit the chair in the waiting room when they called me in. I had to wait a little while once I got in the room, but not too long. So that was nice.

An internist took down all my information, but I didn't even think to bring my "poop journal" with me, so there were a lot of questions I had to guess on as far as time frame and progression of symptoms. Then the doctor came in (I had Dr. Dalal) and we went over my history again. I asked her a bunch of questions. I felt rushed not because of the doctor but because the internist and another person were standing (literally standing) in the room the whole time and kept acting like they needed to leave to take care of other things.

I really didn't hear anything new or different from what I was told before. I like her, don't get me wrong, it was just difficult to make that trip and not really get much out of it. They wanted me to get a stool test done there because their lab does an extensive panel that catches all sorts of infections, not just c.diff. They said they understood if I couldn't make myself go on command but that I could bring it in the next day. Um, no, I am not taking another day off work and making that trip again just to drop off a sample. So that was really frustrating. But after calming down a little, I decided I might attempt to do that this weekend. Get myself accustomed to making the trip on my own. I really want that more comprehensive test done.

So yeah, there was no way I was going to be able to work up a bowel movement right then and there. I had made myself a tea that morning that tends to hold off my BMs for several hours because after the appointment we were going to hang out downtown for the rest of the day. I specifically did that so that I wouldn't have to worry. No one told me I should prepare to give a stool sample. They gave me a gigantic paper bag full of all the containers and supplies to use. I was not about to carry that around with me downtown, wait to see if I'd have to go, and then make everyone go back to the hospital with me. Side note: because my dad was going home instead of hanging around with us, he took the bag home with him. On the way to his car from the train station, a guy almost attacked him, presumably to steal the paper bag. Wow. I wish my stool sample was in it so that the guy could steal it, hoping to find drugs, alcohol, or money, only to find a container of someone's poop. Idiot. Things like this are why I don't want to have to go there anymore than I have to.

If the test shows I still have c.diff, I'll proceed with the long course of vanco (3rd course, 1st long course). If I test negative, I'll get my 2nd colonoscopy (yay) to see if there's any remaining inflammation and if I need any adjustments in medication. I at least got to submit my bloodwork that day.

So there you have it, my first experience at University of Chicago Medicine. Just feeling kind of blah about it all. Sorry if it sounded whiny, I know I have a chronic disease and sometimes have to do things that are inconvenient, I'm just frustrated. Obviously don't let that stop you from looking into this place.

hateuc said...
Thanks GloGirl for telling us about your experience. I think a lot of us on this board do a lot of research about our condition so I know I sometimes feel like I don't learn too much from my GI visits. It has to be disappointing though when you travel so far and really inconvenience yourself in the process.

I always have hope though that they will surprise me and tell me something I didn't know that could possibly be helpful. I have heard positive things about the U of C though so at least that is good.

I can understand your frustration though and I always feel it is worth it to try something new as to cover all bases...I do try to keep my expectations low. I hope that you will have some more satisfying visits in the future--
B

Sounds like you know exactly what I'm talking about it. I appreciate it.

I like the bag story...lol. hope this doctor works out well for you.

q

ks1905 said...
I can drop the stool samples off at my PCP, my IBD GI doesn't have a problem with that and I can also get my necessary blood drawn there.

I always bring a list of questions and symptoms with me to the IBD Specialist, I also take notes during my appointment.

If you're uncomfortable or rushed during the appointment due to the extra people in the room then you should say something about it.

I can definitely just drop the sample off at my usual lab, but I guess they don't do that panel and it would just be a regular c.diff test like the other 3 times.

Yep, I brought a notepad with my questions and tried to write down what she was saying. But I forgot my journal that shows when everything happened.

I am so unbelievably bad at being assertive, but I will think about mentioning that.

Sorry to hear that you had a lackluster experience! I am a patient there (Dr. Rubin) and have had nothing but amazing experiences, so maybe it depends who you see.

After reading your comments though, you may want to consider bringing someone into the actual appointment with you from now on. I am infamous for forgetting what is told to me during appointments because I sometimes get overwhelmed. It just helps to have another set of ears there for that purpose and just to have some support. You might feel less stressed and be able to be more assertive that way. Wishing you the best!