I had an apt with my GI nurse practitioner last week. I was also really shocked that during our appt he had to excuse himself to take his mask off! He told me he hated wearing it and that we were far enough apart that it was ok. I told him I would feel much more comfortable with the mask on regardless of our distance. I can’t believe someone who knows my chance of a risk would be so bold to just think it would be ok!!

Overall my primary GI doctor heard I still had this infection and wanted to see me, so I had to wait for him. They immediately wanted to put me on a biologic drug because “It was just a matter of time” …. A matter of time before what?!?1 I was very respectful, but I told him that the last time I was in his office I left for another doctor because he didn’t listen to me and just wanted to medicate me. He understood and came to an agreement with me. He told me that depending on how my labs and stool cultures back would be the deciding factor. I think this is fair. I know my C-Reactive protein has been high and elevated. It is normal for those of us with IBD to have this. I also have been fighting an infection for the last year so I’m sure this also plays a factor in this. I do know that constantly high levels of CRP can cause heart problems, and this does scare me. But I do not want to be medicated unless I know my Crohn’s is active. I know it is going to happen again. It’s the fate of this illness but until then I will stick with my diet and treating a flare as it comes along!

Point of this blog is to make sure to stand up for yourself! If your doctor doesn’t respect your voice or what you want to do with your body, then find a new one! We pay them to treat us. At the end of the day, we know what works best for our bodies and our lifestyles. We know where we are with this illness and what active illness looks like.

–          I know above I said that I had left his office previously- I did about 6 years ago. In my small town we only have two GI offices and the one that takes my insurance I had been through three of the doctors in that ONE practice. I think by the time I saw the doctor I had, my disease was so bad I just needed surgery and no amount of Remicade was going to fix anything. I was just so sick on the Remicade from the side effects that I decided to leave to a more specialized hospital. I went to the Mayo Clinic and then Shands at UF. I was at Shands until my doctor left in 2019. I saw her replacement and realized he was not worth the drive or my time. So, I figured after years of not seeing these doctors in Tallahassee it is better to have one and be a patient and if I need to go someplace else I will!! 

-XO,