I had another appointment with my GI today and I found out that they’re not sure if I have Ulcerative Colitis(UC) or Crohn’s Disease. My disease is presenting itself kind of weird which is why they’re not sure what I have. The type of inflammation I have is consistent with UC but how the inflammation is presenting itself(patchy and not continuous) is more consistent with Crohn’s. So even though the Prometheus test says I have UC I very well may have Crohn’s since it’s not 100% accurate. I also don’t have any granuloma’s so this also makes it a little harder to determine which one I have. My doctor feels that there’s people who fall in between UC and Crohn’s so I very well could be one of those patients.
There was also a bit of a monkey wrench thrown into my treatment plan this past weekend. Well actually, this started Friday morning. I ran out of prednisone and I had been trying for a week to get it refilled. For whatever reason the electronic refill stuff wasn’t making it to the doctors office. So I called the office to see if my doctor was in so I could get my refill taken care of and my doctor wasn’t in. The receptionist said that my refill order wasn’t even on my file even though the pharmacy told me that they had sent it over electronically five times. I asked if another doctor(the one who did my colonoscopy) could approve the order and I was told no because he didn’t order it.
So at this point I was pretty upset. All I wanted was my damn prednisone. It’s not like I was trying to get narcotics or anything. I just needed my meds that have been helping to control my inflammation. I went to the pharmacy after I got off the phone with the doctors office and told them that they hadn’t received the refill order. They printed out the order, said that they were going to write a note on it that I was out, and manually faxed it over to the doctors office and it still wasn’t refilled. So today I told my doctor what happened and she was not happy. She said that the doctor who did my colonoscopy could of approved the refill or even the on call doctor. She said that she’d be having a talk with the receptionists since IBD patients can’t go without their prednisone.
Because of all this I almost got started on the Imuran today. The new treatment plan consists of me being back on 15mg of prednisone for the next 7 days and then I’ll be stepping down 5mg every 7 days after that until I’m off of it. I’ll still be on the budesonine for now. I got a script filled for Imuran and if my abdominal pain doesn’t go away I have to start that. I really didn’t want to start that while I was in Ohio. My doctor also thinks that my symptoms may be under control with the steroids. This is because of where my abdominal pain was while I was at the office. It was more on my side than actually my abdomen. So now I’m feeling confused about the abdominal pain I have been having. I’ve been hunching/leaning to my left side because I’ve been having pain but now I don’t know if it’s because of my IBD or something else. I definitely need to get it figured out within the next week or so though. Although this could be good news. Maybe I won’t have to go on the Imuran.
I’m sorry about the Prednisone panic, oy. My abdomen aches tonight too. Heal soon.
Yeah it definitely wasn’t fun. I hope it doesn’t happen to anyone else that is a patient at this practice. I hope you start to feel better soon!