Diagnosed with Crohn's Disease: A Patient's Perspective

June 22, 2015

On our Pediatric unit, we see a number of patients with Crohn’s Disease or Ulcerative Colitis (UC). Some are well-established in their care, some are newly-diagnosed and just beginning treatment, and some are being seen by the doctor to explore if their symptoms warrant a definitive diagnosis of Crohn’s or UC. I interviewed one patient (referred to as our “Crohn’s Champion” for privacy) regarding his experience for the last 18 months since being diagnosed with Crohn’s Disease at 9 years old.

RN: How did you feel when you were sick?

Crohn’s Champion: I had severe stomach pain…it hurt really bad. I didn’t have energy and didn’t want to eat. It was scary sometimes. 

RN: How did you feel when you were diagnosed?

CC: I was nervous about what would happen but glad to know why I was hurting.

RN: What’s the best and worst thing when you have to see the doctor or go for treatment?

CC: The best is I love the doctors, nurses and staff because they are really nice and fun. The worst thing is the needles and leaving because I like everyone so much. :) When I first started going for infusions, I was so afraid but now I’m cool with it.

RN: Since your diagnosis, what do you do differently?

CC: I don’t eat spicy food and I am always taking my vitamins. I eat more now and I’m growing fast. Soccer is easier and doesn’t hurt since I started infusions. I have more energy now!

RN: Have you told your friends? How have they reacted?

CC: My friends have been told and are very supportive. My best friend gave me a Build-a-Bear to watch over me.

RN:  What would you tell other kids who are feeling sick or receive the same diagnosis?

CC: Don’t worry…after you take your medicine and the doctors take care of you, you will feel better.

RN: What was it like to go to the Crohn’s and Colitis Foundation of America “Take Steps” walk event last year and this year?

CC: This year I learned about a healthy and unhealthy stomach. It was really fun having my friends at the walk and seeing Dr. Uma (Pisharody).  I feel like they (my friends) will learn more about Crohn’s and Colitis.

RN: How did you decide to go to Camp Oasis this summer?

CC: My mom convinced me and it sounded really fun. The counselors and doctors are there to help.

RN: Can you think of anything else to tell other patients?

CC: Try not to look when you get the IV put in. Don’t worry, everything will be fine. It may be scary but after you take your medicine you will feel better like I did!

Thanks to our Crohn’s Champion for sharing his experience! For more information on Crohn’s and Ulcerative Colitis, “Take Steps” or Camp Oasis, visit the website for The Crohn’s and Colitis Foundation of America at www.ccfa.org.

Topics: Kids