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Gracie’s Story (Crohn’s Disease)

Purple RibbonMy name is Gracie. When I was nine, I started having “stomach aches” very often, and diarrhea. I was losing a lot of weight and was very anemic. The diarrhea and stomach aches were persistent, and it didn’t take long before my mom took me to a doctor. I had recently come back from a trip to Mexico for a week, so we thought it had something to do with that. I had tests for parasites and giardia and many other things. When we ruled out all of those, we thought about gallbladder stones and appendicitis. We could not figure it out, and after many antibiotics and more bloodwork and tests, my doctor told us to go to a GI doctor. So we did, and at my first appointment with him, he said I have Crohn’s disease.

I had a colonoscopy/endoscopy that confirmed the diagnosis. He wanted to put me on remicade immediately, so my mom reaserched it. She did not like it and insisted that we start with the least severe meds. I was put on pentassa and entecort, along with lots of vitamins and supplements. At the same time I started these medications, my parents heard about helminthic therapy (human hook worms), and I started that too. I started doing much better and gained some weight. I tapered off the entecort and was on just pentassa.

About five months later, when school got out for the summer, I didn’t have a routine, so I started to skip my meds by accident. We realized how often I was skipping my meds, and I was still doing really well, so we decided to take me off them entirely. The only thing I was still on was the helminthic therapy. I was in remission for about a year and a half. I credit this mostly to the helminthic therapy.

Last spring, I had my first severe flare. I missed a lot of school and was back on pentassa. I wasn’t getting any better, and after a particularly bad week of vomiting and pain, we met my doctor on a Friday afternoon (after hours). He was worried and ordered an emergency MRE (similar to an MRI but the picture is specifically of the intestinal track). The MRE showed a lot of inflammation but no strictures or fissures, so I went on 20 milligrams of prednisone. This helped a lot, and I was able to go to Seattle for a week to visit a friend.

At the end of August, at our county fair (where I show animals in 4-H, so we were staying in a camper trailer at the fairgrounds for the week), I was getting really sick. After one particularly painful night full of vomiting, I told my mom I wanted to go to the ER. At the ER, I had an X-ray that showed potential blockage which would lead to emergency surgery. Nobody around us would operate on a child, so I had a five hour ambulance ride to Sacred Heart Children’s Hospital in Spokane. I can’t recommend them enough. I had to stay for 6 days. I had total gut rest and was fed through my IV for 4 days. My first two IV’s went bad, and I got a PICC line. I also can’t recommend a PICC line enough.

Anyway, I ended up not having to have surgery. I was put on 40 milligrams of prednisone, along with 6MP. I am doing good now. I have finally started gaining weight and now weigh 101 pounds, a personal record. I do have horrific moon face and hair everywhere on my body, especially my arms, from the steroids. But that will go away, so they say. 😉

Gracie
Montana
Submitted 02/06/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Hi my name is Josie Stephens and I am Miss Teen Louisiana United States 2015 I was diagnosed with Crohn’s Disease at 13 years old and have been living with it ever since! I would love to answer any questions you might have or just be here for support! Feel free to email me at jnstephens58@yahoo.com , I look forward to hearing from you!

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