Me And IBD

I am IBD Visible because I believe that awareness makes a difference. Education is key to living as healthy as possible. It is key to closing the gap between the healthy world and chronic illness world. Lastly, it is vital for those in the medical profession to gain a deeper understanding and compassion for us and strive for the best medical care. No matter how complex every person deserves the best medical care and to have manageable pain.

December 1st – 7th is Crohn’s & Colitis Awareness Week. The Chrons and Ulcerative Colitis Foundation says this overall about IBD: “Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. The effects of these diseases are largely invisible, which is why we need to make #IBDvisible!

Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes.”

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The pain began at age nine. Growing up, I frequently had stomach viruses. I had issues with being underweight, even though I was eating. I was told I was underweight because I was growing too quickly. The abdominal issues got worse about three years ago. I was unaware that I looked like a walking skeleton. In addition to the pain, I would have 15 -25 trips to the bathroom with diarrhea. I have encountered so many issues medically that it is a blur when some symptoms began. Eventually, I saw blood. It was a vicious cycle of medical testing and retesting. At one point in time, I swore I was done with the stomach stuff. Done seeing doctors. Done going through the tests.

Last April, I was in the I’m done state of mind when I encounter a huge flare. Of course, my mom brought me to the hospital. My liver enzymes were sky high. Despite the fact that I did not want to go through yet another colonoscopy one was ordered. I was positive for Ulcerative Colitis. The hospital doctors explained that they don’t see cases very often like mine. I have about five autoimmune diseases. I was in the hospital ten days. Despite their good efforts to avoid steroids, I ended up on a whopping 60 milligrams.

And so, the battle continued and continued to this day. I now have a gastro who I trust and like. One who listens, has compassion, trust me, and tells me everything I need to know. I struggle with eating daily. There is no set IBD diet. My current treatment plan consists of Prednisone, Balsalazide , and Remicade.

The journey with IBD is unique for everyone. If you are diagnosed with IBD I would like to encourage you to check out these links:Crohn’s and Colitis Foundation, Inflamed & Untamed, and Kelly Patricia.  CCFA has on its website: “We need to make IBD visible! Why be IBD visible? While IBD patients may look healthy internally they may be suffering. The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. YOU can change this by getting involved and sharing your stories, giving a face to these diseases.”

  • December 1: A focus on IBD advocacy.
  • December 2: The focus is how IBD is an invisible illness. The whole “but you don’t look sick,” thing.
  • December 3: The focus will be on pain.
  • December 4: The focus is on fatigue this day.
  • December 5: Mental health is the focus on this day.
  • December 6: Complications of IBD will be the focus of the day.
  • December 7: Community is the focus.

This week use the Twibbon to raise awareness. Share your story on social media. Use #IBDVisible. Share your story with the Crohn’s and Colitis Foundation linked above for a chance to be featured on the web page.

 

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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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