My journey living with Crohn's Disease and an Ostomy. I am raising money for The Hospital for Sick Children to update the outpatient treatment rooms so that children can have a comforting and uplifting environment that promotes healing. #JacobsHealingRooms
Thursday, May 28, 2015
Welcome to my first "vlog". This was a practice run of filming our first video blog for my new fundraising project, Jacob's Healing Rooms.
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Well I'm finally out of the most recent hospital visit so it's time to get this fundraising started! I'm excited to finally be able to share my story with you.
My name is Jacob Ralston, I'm 11 years old, and I have severe Crohns Disease for which I am treated at Sick Kids Hospital in Toronto. My journey started 3 years ago, when I started pooping bloody diarrhea and had intense pain in my stomach area. We went to several doctors, most of them saying to "go home and drink water" believing that I had a flu/virus of some kind. My symptoms got worse. After several back and forth visits over the course of about 2-3 weeks, my mom finally took me to Sick Kids Hospital. I had my first set of scopes on July 8, 2012 with biopsies to confirm presence of disease and rule out other things. I was diagnosed with Ulcerative Colitis, effecting my entire colon.
I spent a lot of time at the hospital over the next little while. I was started on sulfasalazine and prednisone. Unfortunatly the sulfasalazine caused my liver enzymes to go out of whack, so I had to stop that med. By the time late August rolled around, we were starting out on Remicade, combined with Methotrexate, Lansoprazole for Acid Reduction, Flagyl and Vancomycin, and still on a heavy dose of prednisone daily. Nothing helped and I was still in-and-out of the hospital. We call it "frequent flier miles" for the sick.
By the time Christmas rolled around, I had already had 3 sets of scopes and the doctors were talking surgery. I asked the doctors that if surgery was necessary, to please take my colon for research to find a cure so no one else had to go through this. In January 2013, I had my last Remicade treatment, followed by one last set of scopes, and then February 7, 2013 I had my colon removed and donated to science. Typically many Ulcerative Colitis patients will end their story here. Unfortunately, mine continues.
In August 2013, after months of complaining of continued symptoms, I had another set of scopes. This time, major inflammation was found in my duodenum. The doctors weren't sure if it was Celiac Disease or Crohn's Disease, so I went on an exclusive gluten-free diet for 6 months. After that I was scoped again and things had gotten worse. I was diagnosed with Crohn's Disease and started on Humira injections. The Humira caused me to look like a car accident victim with bruises head-to-toe. After several injections the doctors did more scopes and biopsies, and saw that there had been no positive change from the medication. I spent the Summer of 2014 mostly in the hospital receiving TPN (vein nutrition) as I could no longer eat without constant pain and vomiting. In September 2014, I was started on Remicade and Methotrexate again.
In March 2015, after several more hospital stays and scoping procedures, my body suddenly broke out in extensive psoriasis patches that were painful and bleeding, and was in a full-blown Crohns flare. After more scopes were completed, the doctors decided that Remicade had most likely led to the development of psoriasis and that I would need to change my entire Crohns treatment. I was started on Stelara injections 2 weeks ago. So far, so good! At least on the outside, I am seeing really good change. Fingers crossed that it keeps going!
And THAT is my very long story of how I've gotten to this point. I have a very special request coming very soon. I am in the process of organizing a fundraising campaign to raise money to refresh the outpatient treatment rooms at the hospital. I'll talk more about the whats and whys in a bit, so stay tuned!