NORTH DAKOTA HONORED HEROS

Marcus Stephenson &

Rachael Gilbertson

Marcus

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Marcus is an inquisitive, friendly, sports-loving 11-year-old with a wicked sense of humor and endless energy.  He was diagnosed with Crohn's August 13th, 2013 at age 7, about 3 months before his 8th Birthday

 


Rachael

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Happy 8th Re-Birthday to Me: How May I Help You?”  

I grew-up knowing that having a digestive disease meant living in a state of unknown. Experiencing life with my Grandpa Ed (who lived with Crohn’s Disease), hearing of his close calls, and visiting him in the hospital during flares, painted a detailed picture of this looming menace: Crohn’s Disease - that could appear at any moment and render the most strong, loving, funny, intelligent man - my grandfather - nearly helpless. (This is where Rachael's story takes a turn) 


 


Marcus is an inquisitive, friendly, sports-loving 11-year-old with a wicked sense of humor and endless energy.  He was diagnosed with Crohn's August 13th, 2013 at age 7, about 3 months before his 8th Birthday.  

 But his Gastroenterologist believes his actual journey started sometime in 2011 at the age of five. Between the ages of 4 and 5 he complained of "a hot stomach" and bellyaches when he ate.  He started taking Prilosec, which seemed to help.  He felt ok most of the time –even without Prilosec- with only an occasional hot stomach or belly pain complaint.  As a little kid, Marcus consistently grew on pace for his age. Then when he was 6, we visited with his MD about why he would still be in size 5 clothes.  Tests were ordered, Celiac was ruled out and we were encouraged to watch his growth. 

     Fast forward to May of 2013.  Marcus told us he was having very soft poop for a few weeks.  We met with his doctor, did blood work and continued to watch his BMs.  The soft BM became more liquid and unusual in color; he also became tired with not much of an appetite and lost a bit of his spunky attitude.   Another trip to the walk-in clinic, more lab work, and stool tests and it was clear he couldn’t wait months for a GI consult.  He was admitted for a CT scan shortly thereafter and started on Remicade and iron infusions. 

    Two days later, we were back at home but just starting a year and a half long roller-coaster ride of figuring out treatments, nutrition, and ways to help him grow.  After a few trips to Rochester and three EGDs and Colonoscopies, we finally got it right: a double dose of Remicade infusion every two weeks, a Methotrexate shot weekly, Uceris pills daily, cyproheptadine to stimulate his appetite, and Carnation supplement drinks 4 times per day for calories.

   The roller coaster is mostly parked these days as Marcus is mostly symptom free.   He’s down to Remicade every 8 weeks, still at double dose, with methotrexate weekly.  He is off the Uceris and down to two Carnation supplemental drinks daily.  We figured out a few of his food triggers and know how to avoid them.   His Endocrinologist says he has time to make up for his stunted growth and says Marcus should be back on track for his age in about three years.  We just need to keep him eating and growing, not always easy now that he has his energy back and is constantly on the go.

After his diagnosis we used the Crohn's and Collitis website to access a wealth of educational material that helped us with diet, symptom management, treatment options, and general support as we navigated uncharted (and at times scary) territory.  

Our first Take Steps Walk was a year after diagnosis and helped Marcus feel he wasn’t so alone in his journey with Crohn's.  It has also helped us as a family,  knowing that there are others who have to hold their family members hand while getting poked with needles, fight to make them drink something they don't really like but need to drink so they are healthy - on a similar roller coaster as us - all that empathy and community support makes a big difference.  

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