My Message to Other Patients with IBD - Cincinnati Children's Blog

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.

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

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Alex Jofriet

About the Author: Alex Jofriet

Alex Jofriet has lived with Crohn’s disease for 9 years, and is a patient mentor at Cincinnati Children’s. He is currently attending his freshman year at University of Cincinnati, where he will study biochemistry. After he graduates his aim is to go to medical school to be a pediatric gastroenterologist.

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  1. Stephanie Appleman August 28, 20:24
    Glad to see you're doing so well Alex, and are sharing your experience with other patients. Stephanie (former GI fellow at Cincinnati Children's) :-)
    • Alex Jofriet Author September 02, 11:43
      Thank you for your kind words Dr. Appleman. Sharing my experiences is my way of making my disease a light for others to follow. Hope you are doing well as an attending! Alex
  2. Nathan Kuznar August 30, 20:36
    Hi Alex, My name is Nathan and I am nine years old. I really liked your story. I was diagnosed with Crohn's disease last year when I was 8. I was really sick at first and my doctor started me on Remicade right away, but now I am on Humira and methotrexate. I just found out today that I have cdiff too. I really hate this disease, but I think it's cool that you kept doing karate even though you were sick. I had to stop when I got sick because it hurt too much to get kicked in the stomach , but I am still playing football. My favorite thing to do is ride roller coasters, so I thought it was cool that you talked about Crohn's being like one. I am going to try to remember that when I am feeling bad to remind me that it gets better too. Thanks for your story. Your friend, Nathan Kuznar
    • Alex Jofriet Author September 02, 10:28
      Hey Nathan, I have tried Remicade and Humira with methotrexate before too. I also had cdiff too which brought another pill (an antibiotic) to take, but was treatable. I completely understand what you are going through and it is amazing to me to see that you are going through all those things at your age, but still are enjoying the stuff you like to do. Thriving despite the odds is something you should be very proud of yourself for. With roller coasters they are not my favorite so for me the getting better part is the station at the end. But when you think about it maybe the good part is when you crest the top of the track right before the fast fast descent. I hope that might strengthen your visual of your roller coaster ride. Thank you for enjoying my story and I want to say that you too have a story and I have enjoyed hearing a bit about it. Your friend on this roller coaster, Alex Jofriet
  3. Diane August 16, 17:46
    Alex, I commend your for your important work. I was diagnosed 16 years ago , at the age of 46,with Crohn's , and two years later with Lupus. Because I was a teacher, I had the good fortune to have health insurance. I also had a secure marriage, with 3 sons, and some wonderfully caring friends, all who have stuck right by my side throughout the ride. I am thankful that everything fell nearly in place, without the added stress of adolescence and dating. As a teacher, I have also known kids who were diagnosed with IBD,and have met with their middle school counselor and teachers, as an advocate. Well my health issues this year, got the best of me. Four falls, four concussions, stitches, and broken wrist. Broken hip 2 years ago. All from malabsorption and malnutrition. Also compromised renal function. I listened to my Drs, and agreed that I couldn't continue to teach and manage my health. So, I needed to retire. You have reminded me of the fulfillment I experienced in patient advocacy and mentoring. Thank you for being such an inspiration. The world could use a few more of you!