Posted by Seth Kahn on September 30, 2020
My name is Seth. I am 17 years old and a rising high school senior. I was diagnosed with Crohn’s disease in sixth grade. I had a relatively typical path to my diagnosis. After a few years of worsening symptoms (stomach pain, constipation, and vomiting), I went into the hospital, where I had a gastric emptying scan and upper endoscopy, and then labs, a CT Enterography, and finally a colonoscopy. After a few weeks on Prednisone, I started IV Remicade, which I have been on ever since. Outside of Crohn’s, I play trombone and tennis. I’m also very involved in politics, and I was recently an intern for two congressional candidates in Ohio.
In the few years surrounding my diagnosis, I was very sick. I found it hard to participate in sports, pay attention in class, and take tests because of flares. I was also below the 3rd percentile for BMI and was very anemic. However, I’m now at a healthy weight and I don’t struggle as much anymore, and my flares are relatively infrequent now (about every month or two).
Every five weeks, I get IV Remicade. My tip for anyone who has difficulties for IV placement is to drink a lot of water before your infusion! These days I almost always only need one stick. With IBD, I’ve gained a lot of empathy and perspective and learned a lot about privilege. I have learned first-hand what it is like to have a chronic disease and to struggle with it daily, which allows me to empathize with the struggles of many people around the world. I’ve also gained perspective listening to the stories of people who have much more challenging forms of IBD and even worse diseases. I feel fortunate to have access to excellent doctors, insurance that covers my medicine, and educated parents who can advocate for and with me.
I only know one other person with IBD, so the amazing thing about the PAC is that it provides a community of people with shared experiences who I can get advice from and just talk to. The PAC also really helps in giving a platform to talk about IBD through LOOP and help other patients with IBD feel less alone. I hope to help other patients learn from my experiences by being an active part of the amazing platform the PAC and ImproveCareNow provides.
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