what do you expect from your GI?

[Deleted]

I don't know if I need to adjust my expectations or find a new practice. I am currently getting treatment at the "best" hospital in the state, but I'm just not pleased.


Since I have a solid dx it's all about disease management and monitoring for organ failure/serious complications with the drugs. I have only met with my GI once and all communication is done via nurses who sometimes take 1-2 days to call back. I never had actual lab numbers reported to me and if something is normal, they don't mention it - only mention the stuff that is abnormal. when they relay my doctor's recs based on my blood tests, I'm never told why we're trying new things and I have to ask. 

I am fine being my own advocate. I'm organized and knowledgable and keep a running spreadsheet with my blood count, iron levels, etc.. but my own organization has decreased since seeing this practice because they just don't provide me with the information I need to stay organized. this is a problem because I just don't trust any one person to manage my health for me. I understand doctors have huge caseloads and time pressure so I want to play an active role in the management of my health. 

anyways, if you have diagnosed Crohn's or colitis, how often do you see your GI? What do you do? Have you ever had a "checkup" where you just get to talk about how things are working? 

thanks in advance


ETA: I booked an appointment for next month with a GI doc at my hospital. she's supposed to be really thorough and the bonus is that I will have access to my entire medical record. but I'm feeling a little guilty..

[bcv513]

I was diagnosed in December and have seen my GI at least six times since then. They never tell me my actual blood count numbers, but there is an online portal where I can look at them. I get a phone call from the GI (not a nurse) within three hours of having blood drawn. They also send a letter with the results. Before leaving every time, I get a sheet with the current plan, the plan for the next few weeks, and my next appointment. I called the office once the day of my colonoscopy with a question, and the doctor got right on the phone. Then she called me the next day at work to see how I felt. I am NOT a good advocate for myself. I'm not good at speaking up. I've been very happy so far. Don't feel guilty for changing! You need to take care of youself first

[OrangePixyStix]

I generally have to call or email their office to get any feedback from blood results, but it seems like that is normal for most any doctor.

I've been diagnosed just over a year, and in the early stages when I was sick and flaring, I was meeting with the GI every 2-3 weeks until we could get the bacterial infection flushed out and to monitor inflammation levels and such. Now that I've been in "maintenance mode" and have mostly recovered, I only go in every 4 months to actually see the GI in person.

I have made appointments just to discuss options, ask/answer questions, and learn about her expectations... especially after she recommended going on Remicade and I had done some online research about it. I had so many questions and she had me come in just for discussion. I even got a second opinion from another GI Doc a month later just to discuss my diagnosis and confirm my regular doc was giving me the best plan of action.

So far this year, my appointments have only been for discussion on my progress, taking blood for basic panel monitoring, and confirming scheduling of my upcoming infusion appointments. Luckily since I've been feeling a lot better, I haven't had to schedule any more appointments other than the general "every 3-4 months" recommendation for the treatment plan I'm on.

[greenscreen]

The plan with my GI is to have routine appointments every 3-4 months once things are stabile. I get blood drawn with Remicade infusions every 8 weeks and have access to the results through the online portal within a few hours. I always leave with a printout summary and next steps.

One of the things I love about my GI is that most appointments take about an hour. She calls me back when I have emergencies, which has prevented ER visits. Any medication changes have felt collaborative, and I love the Nurse Practitioner.

I think it's worth looking until you find a DR that you really like and can trust.