I'm so frustrated with my doctors!

[InstantCoffee]

Dx at 14 now Im 33

Remicade kept me in check from 14 to 18. When I graduated college I started getting bad diarrhea issues and hydradenitis flares.

I was moved to an adult GI clinic and finally they switched me to Humira which did nothing.

Then they just kept running dead end tests, GI series, upper/lower, scopes, ultrasounds, you name it. For some reason they refused to change biologics, I suspect the doctor was getting kick backs.

Finally I got into remission with diet and dropped my doctor and meds and hadn't gone to one until 2022 when I had a partial obstruction which was preluded by several months of low energy and pain.

After a few months of struggling with the doctors to get prescribed a biologic, I finally got put on Cimzia. I was doing amazing. Gaining weight, going on hikes, working out.

Well my doctor's office messed up the refill and I went over a month without.

And now I'm in the hospital recovering from a bowel perforation with an ostomy bag.

Never had a surgery up until now all because they messed up my prescription refills. This should be malpractice. It's insanity.

 

[Lisa]

Oh geeze! Hope you are able to heal up...any idea why/how the Dr office managed to screw that up?

I'm dealing with somewhat similar circumstances with my Dr/clinic- thankfully my Remicade prescription has been getting renewed (the office staff are actually on top of that), however I am having to advocate for myself to get my routine bloodwork done every other infusion now since last fall.....the Clinic has not put in the orders for it to automatically be done...after over 16 years of doing the same thing it should almost be automatic, and I shouldn't have to fight for it every 4 months!!

 

[InstantCoffee]

Oh geeze! Hope you are able to heal up...any idea why/how the Dr office managed to screw that up?

I'm dealing with somewhat similar circumstances with my Dr/clinic- thankfully my Remicade prescription has been getting renewed (the office staff are actually on top of that), however I am having to advocate for myself to get my routine bloodwork done every other infusion now since last fall.....the Clinic has not put in the orders for it to automatically be done...after over 16 years of doing the same thing it should almost be automatic, and I shouldn't have to fight for it every 4 months!!

I habe no idea how they managed to mess up.

I called optum specialty pharmacy and they said they need a refill. Doctor's office even says if you need a refill to call the pharmacy first but they said the doctor wasn’t getting back. I called the doctor and the pharmacy did and they said they'd get back.

I waited too long, assuming it was handled, and another couple weeks went by before I checked again. Pharmacy called GI and left the contact info again.

Then a week like I called doctor again and I made it known I was over a month late and they panicked and I had it 2 days later.

But it was only a few days after my dose I flared and ended up in the hospital.