After my brief hiatus I wish I could write about good news, unfortunately the blood is back. It’s been back for weeks and what is a temporary fix? Predisone! Thankfully due to my personal pharmacy I have an abundance of leftover pills, more money in my pockets for now. When I noticed the blood wasn’t going away, I sent an email to my GI who I haven’t seen in 3 months. He stated that I start taking 20mg of predisone daily and see his PA again. . . the plan is to get an appointment first thing in the morning to avoid taking leave without pay since I’m still under a 90-day probation at the new job. It’s only been 3 weeks . . . goodness!! I can’t make it a freaking month without seeing a doctor!!! In the email to my GI I also mentioned AGAIN how I believe the Apriso is not working since the bleeding has not stopped and he finally agreed! I’m still in shock . . . so back to square one in finding a new long term drug .
I do not remember the last time I was stress-free, this is the most relaxed I’ve been in months. There is no drama at the new job so far . . . and I have the money and energy to go shopping,clean/decorate my room, exercise, and even got a hair cut. It felt like I was starting over, but now I might have to pump the breaks . . sighs . . . .
I’m not the most religious person, but I would really appreciate any prayers and/or positive vibes coming this way. I was on such a “high on life” weeks ago to an all-time low at the moment. Mood swings galore!!
Trying to remain hopeful and can only live one day at a time . . . .
Have you ever stared at the ceiling to prevent tears from falling on your face? To avoid letting someone see you cry? That was me today. It wasn’t like I was shocked by the news, but I felt like I reached my breaking point.
After two weeks of horrible symptoms I finally got to see my GI, he said two words that I hoped I would never hear, “Prednisone & Remicade”. He stated how my condition is getting worst and in order to force my symptoms into remission he prescribed me prednisone (aka “the devil”, the name many IBDers call it). Thankfully its not a high dosage, and I was told to take it until I start feeling better and eventually stop. Once i’m off the prednisone, he would like to start remicade in order to maintain my remission. Unfortunately, Remicade is not an oral prescription, it can only be done through IV infusion, which means a trip to the hospital for 3-4 hours, every few weeks. . . sighs . . . I don’t like hospitals.
Before my follow-up appointment in one month, I have a lot of lab work. More blood work, testing for tuberculosis and hepatitis, and a stool sample. The process of collecting a stool sample is hilarious to me, but I won’t gross you guys out lol Also today, I got a call from my primary physician about my blood work results, she stated I have Vitamin D deficiency, and wants me to buy over the counter Vitamin D supplements. I’m not surprised, in the past week I have had no energy and my body aches all over. So . . . with the addition of prednisone and Vitamin D pills, my pill intake has increased to . . . 14 pills a day!!!
It was truly a sad moment in my GI’s office, we both looked at each other with sad eyes 😦 I would write more, but I am completely exhausted. Really hoping I feel better soon.