Cincinnati Children's Blog

My Message to Other Patients with IBD

My Message to Other Patients with IBD

My name is Alex Jofriet. I am a college student. I live in Ohio. I am a patient mentor at Cincinnati Children’s because I have Crohn’s disease. Thus my area of expertise: patients with Crohn’s disease and ulcerative colitis.

A mentor is someone patients can lean on, someone they can trust, and someone who, in my opinion, knows from experience what the patient is going through because they have lived it themselves. Doctors and nurses do a great job of understanding a patient’s condition through science, experience and patient relationships, but it is only those who have lived through the illness can truly understand what a patient is going through – it is these people that can mentor patients, and serve as another line of attack against chronic illness.

One of the things I have learned along the way while dealing with my disease is that life with a chronic illness is like a roller coaster ride. We go up, we go down, and then we go up again. Every patient with inflammatory bowel disease (the broad term for the two diseases Crohn’s disease and ulcerative colitis) can likely attest to this roller coaster idea and it certainly is not easy to live through.

I think patient mentors (and professionals) can play a key role in helping patients with IBD through the ups and downs – sometimes it is hard to see the light at the end of the tunnel, but for most part it is there. When we as mentors and professionals come together with one voice to share our wisdom and experience the message is very clear – you can overcome this roller coaster.

I invite you to watch a video made by patients for patients for a little insight into getting to the light at the end of the tunnel.

After watching the video, I am sure there will be some that shake their head and say “yes, but my case is different – my struggles are worse than those talked about in the video.” However, let me tell you about my story before you jump to that conclusion.

My case of Crohn’s is a relatively severe one. I was diagnosed in fourth grade at the age of 9. In the 5th grade, I had my first week of hospitalization and back fractures due to osteoporosis. In sixth grade, I had my first of three surgeries. I have had a three week hospitalization and I spent 6 months on bowel rest. I had an NG feeding tube, TPN (total parenteral nutrition), a PICC line, and an ileostomy. We could not find a medication that would put me into remission until 8 years after my diagnosis and 1.5 years before I was planned to graduate high school.

Just like in the video, I overcame the roller coaster and there were plenty of people along the way to help me. The key for me was to stay positive while riding the chronic illness roller coaster. Instead of focusing on the severity of my case, I focused on the accomplishments that were important to me.

I was 17th in my class of 500 even though I missed 20 days as a sophomore. I was an Eagle Scout at 13 and a black belt in karate at 12. Freshmen and sophomore year of high school were my hardest years with Crohn’s disease but I marched baritone in the school band all four years of high school. I set goals for myself. Those goals allowed me to grab control of my disease and not let it control me. So set yourself some goals and work towards attaining them in spite of your disease.

Lastly, but certainly not least, open up about your disease to others – become a mentor. Many patients when they are first diagnosed do not want to share their IBD diagnosis with anyone. The symptoms are uncomfortable to talk about and share or maybe you feel that by telling someone about IBD it will allow your disease to control and define your life. I know because I spent the first five years after my diagnosis not telling a soul about my disease. Based on my experience, I can confidently say, not opening up makes your disease worse. Without anyone to lean on, there is more stress on the patient, and with stress comes more symptoms.

I am very passionate about my disease. My disease has taught me many things about myself. It has shown me the true friends in my life; strengthened my bond with my family; made me grow up faster; taught me who I really am; willed me to overcome; and made me a mentor and an advocate.

My message to you is hang on for the roller coaster ride, and look for the light at the end of the tunnel by sharing your story along the way. Be a mentor and learn who you are.

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If you have questions, or would like to request an appointment, please contact our Schubert-Martin Inflammatory Bowel Disease Center.

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