Leslie

16 years ago, while I was a freshman in College, I was diagnosed with IBD. Since then, it has been a merry-go-round of starting a medication, doing fantastic on it, and then for whatever reason, having it stop working and landing me in the hospital. The most recent hospital stay I had was in October and November of 2022. 

I went to the hospital and left three times (I hate hospitals), trying to stay home and just be on prednisone but not being able to get out of bed, eat food, having a fever and very fast heart rate, and losing 30 pounds in a couple weeks, kept sending me back to the ER. I was on a dosage of steroids they would give to a horse, and started Stelara, but nothing was helping. After a few weeks as an in-patient, the GI Doctor on call suggested I try a one pill a day medication called Rinvoq because they had free samples at the office. Turns out, they were out of samples and the drug rep was in the DR, of course! Lucky for me, they had expired samples of another pill called Xeljanz. He suggested I try it, because if the pill didn’t work, then I was looking at surgery to have my colon removed and do what’s called a J-Pouch surgery. (Google it, modern medicine is pretty cool!) Since I had been doing so well on Remicade for the past three years, I didn’t even realize that surgery could be on the horizon for me, let alone maybe that week! Luckily, the Xeljanz has worked!!! I was given my life back, and I thank my lucky stars every day that it has worked so well. 

I also realize there are so many people out there in my exact situation who are not as lucky. Medication and surgery are not cures, and are definitely not without their downsides. I just hope every day that mine keeps working because I know all too well what happens when it doesn’t.

I continue to run for Team Challenge and to raise money for the Crohn’s & Colitis Foundation, for myself and others like me who have to deal with hospital stays, surgeries, expensive medication ($5,000 for a 30-day supply, in my case), insurance companies!!!, and so much more anxiety and stress that comes with having a chronic illness. 

When you are in remission and healthy, it is so easy to fall into a routine of really just living a normal life like you don’t have a chronic illness. I continue to run, fundraise, and raise awareness for IBD, for myself but also everyone who is affected in some way by this horrible disease until we have a cure. 

Marathon #79 – Recap