Ulcerative Colitis Update

This flare began about a week ago. My liver enzymes are high again, though not nearly as bad as in the past. The theory is that this is from my immune system attacking it. The major difference is that this time I am still on 15 mg of prednisone, which I also refer to as my safety net. The pain has been extremely intense this weekend. With these flares, it feels like being hit by a bus I know it sounds dramatic, but the intensity is hard to describe. The main issue is the abdominal area. Evey joint hurts, my ears ache,I have the chills and nausea. Of course, the fatigue is 50x’s worse than normal.

My Gastro retired last month and that was heartbreaking. She was the first gastro I had trusted and had compassion. I saw the new gastro on Friday and it was nerve-racking, to say the least. I am not a fan of seeing new doctors because my case is complex. I was relieved that this doctor had listened, was up to date on my medical mess, had some compassion, and was ready to start something new.

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Most of you know that in addition to Lupus and POTS I have Ulcerative Colitis. Eating has been a struggle when the Prednisone is lower than 15 mg. Currently, I am on a combination of two anti-inflammatories, Prednisone, and Mercaptopurine (a chemo also known as 6mp). The goal for any chronic illness patient is to come off Prednisone. In my case dropping to 5 mg or coming off means going into the hospital. This is a common issue for people with a chronic illness. I know I am not alone in this struggle. #It’s A Spoonie Life! Thankfully, I have been blessed and have not suffered major side effects from Prednisone. 6MP is my second chemo. I am not a fan. I have had no improvement on it.

With all that being said I got the extremely exciting news that I do qualify for a biologic (which I knew). And of course, my new gastro feels it is time to begin the testing and paperwork. Testing include normal labs CBC, Comprehensive Metabolic Panel, and Hep Panels. In addition, TB testing is required. At the same time, insurance paperwork is started. I will be on Remicade. I will be writing a Remicade blog post soon!

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A huge thank you to everyone who participated in invisible illness awareness week! I was honored to be involved, but I wish I could have done more.

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Author: Victoria

Welcome, it is an honor you dropped by. I am Victoria. A twenty-something-year-old battling multiple chronic illnesses while learning how to thrive. Chronically Hopeful was designed to educate others and to provide support to those who are chronically ill. Proving encouragement to others is essential to me. I share my health on here. My major illnesses are Lupus, Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, EDS, Mast Cell, Endo, and Ulcerative Colitis. I want to share my story with you hoping you will experience support; that someone else understands your pain, struggles, and frustrations. God has chosen not to heal me but to hold me. The more intense the pain the closer his embrace”. My faith, as a Christian has sustained me through the stormy waters of the past few chapters of my life. I desire to grow closer to God and lead others closer to Him. I help lead two online women’s Bible studies. I also post devotionals. I am pursuing my bachelor’s degree through Liberty University’s online program. Despite my illnesses, I have thrived in school. I am a member of Phi Theta Kappa Honor Society, Psi Chi the International Honor Society, and Tau Sigma Honor Society. Abby is my service dog in training. I also have three cats Gracey, Fluffy, and Sadie Rose. I am looking forward to hearing your precious story. Sending hugs, prayers, and spoons. Have an amazing day!

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