Positivity and Leaning on Faith: Renee's Crohn's Disease Story

ulcerative colitis blogger

Her Story

I feel like my diagnosis is very layered and drawn out (as are most diagnoses with chronic illness which suxxxx). Essentially, in March of 2018 I started developing very large red blotches all over my legs. They became so painful I lost the ability to walk and landed in the ER. I later found out they were Erythema Nodosum, which only 1-2% of Crohn's patients experience (YASSSSS ME!). After that visit, I started rapidly declining. Black out spells, stomach pain, extreme weight loss, flu like symptoms, etc. I had a colonoscopy scheduled for May, which further confirmed severe Crohn's disease. It took two months to get medication after that, so as you can imagine, my symptoms worsened. It led to me moving in with my dad so he could take care of me full time. I'll never forget him carrying me into the infusion center for my first dose of Remicade because I collapsed on the floor 3 separate times on the floor of UPenn Hospital. Within three days, I felt like an entirely new human. I've been living the dream ever since! I switched to Humira in January because my body ended up rejected Remicade. I had a bad run with CDiff in November and a scary flare in March/April that led me to be in a wheelchair, but I'm back and better than ever babyyyyy!!!

Accepting Her Diagnosis

I've been sick my whole life. I was diagnosed with Autoimmune Hepatits when I was only 2 years old. So, dealing with the baggage - appointments, tests, lifestyle - was something I had to accept without even realizing life could be different. For Crohn's, though, it was slightly harder. I had lived 21 years a certain way and now that was about to drastically change. How could that be fair? I think something that helped me accept it was my faith in God. I know that not everyone believes in God, but believing in something - the universe, the stars, multiple gods - can give you a sense of purpose. For me, I had this realization that I loved people, I loved life, I loved teaching, I loved being relational. Those are my gifts that God gave me and now with Crohn's, I have this brilliant opportunity to put those gifts to use. His plan for me is so far outside doctor's appointments and tests; it spans to connection to others, a deeper strength in myself and Him, and a love for life that I did not know was possible. Crohn's is this amazing way to learn so much about life that I would have completely missed otherwise. 

Tati’s Top 3 Tips For Women Living With IBD:

  1.   Do what works for you. I have vegan friends, SCD friends, people who swear by yoga, people who don't use western medicine. Do what works for you and make that your truth. Do not let anyone outside influence you to do something that won't benefit you in the long run. IBD is different for everyone. You aren't going to give every flower the same amount of sunshine and water and food, so why do that to yourself? It's okay to be a sunflower while someone else is a tulip. We can all grow together.

  2. Take advantage of the good times, but embrace the bad times. If you're feeling good, get out there. live your life! You cannot live in fear of your next flare. Life will pass you by so quickly. Bad times will come, and that's okay. I promise it's here to teach you something. It might be something small or it can be monumental. Everything happens for a reason. 

  3. Take time for yourself ALWAYS. Time has a funny way of always working itself out. If you're going to be late, but want breakfast, eat it. If you need just a few more minutes of sleep, take it. If you want to stay up a little later watching netflix, by all means binge away. In the end, the only person that you truly take care of you is YOU. One of the best ways to do that is to make sure your heart and mind are happy.

Gaby’s Favorite Mantra/Quote To Get Her Through the Hard Times:

“Promise me you will not spend so much time treading water that you forget, truly forget, how much you've always loved to swim." - Tyler Knott Gregson

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My name is Renee and I am an IBD Warrior Woman