A few weeks ago I posted how I had opted to take myself off of the prescribed biologic med, Entyvio, that was being used to treat my Ulcerative Colitis. I hadn’t had digestive issues in years, but had constant joint pain which was inhibiting my training and daily life. One of the main side effects of Entyvio is joint pain, but the doctors assured me it was related to my autoimmune issues. I had already been seeing a Rheumatologist and had tested negative for Rheumatoid Arthritis, but he still put me on Methotrexate (a cancer med) to treat the joint pain. So I went from being on no meds and never seeing the doctor to being on 2 heart meds, 2 UC meds, and 2 arthritis meds and was still nowhere near feeling like I did prior to all of this. I finally decided that this wasn’t the path I wanted to take and started looking for other options.

After 11 weeks of being off the Entyvio (I was getting infusions every 8 weeks) I basically had a worst case scenario event, my digestive issues started coming back. I had forgotten how bad they could be. I couldn’t eat or drink anything without having to immediately run to the bathroom. I lost 10 lbs in a week. It’s my own little version of hell. I don’t eat enough as it is, but when this happens eating becomes so uncomfortable that I end up opting not to eat at all. I made an appointment to go back to get the Entyvio the following Friday, but had an appointment to see my new Rheumatologist the Tuesday prior to it.

At my first appointment the new Rheumatologist had said she would review my bloodwork and history before placing me on another med. Unfortunately she didn’t have any of my information in front of her at this second appointment and immediately started recommending Xeljanz, a newer med used to treat both UC and RA. At the last appointment she said she would try Sulfasalazine, an older med, but I couldn’t remember if I had taken it with everything I’d been on. Trinity called our insurance company and found out that even with our coverage the Xeljanz would still cost us $3,500/month. That ain’t happening, so I called the financial assistance line to discuss my options. After briefly discussing my options the phone call was cut off.  This happened twice.  I took this as a sign so we called the doctor back to see if she could just prescribe Sulfasalazine for now. Although the Sulfasalazine states that it takes weeks to work, it immediately stopped my flare up. Within a few days my joint pain started to subside as well. This is a med that was approved in 1950, has stood the test of time, has few side effects, and is listed as one of the most effective and safe medicines needed in a health system. Why the hell do they keep trying to give me these new meds that have a laundry list of side effects? Give me the proven med every time!

I’m still off the Entyvio and stopped taking the Methotrexate and Lialda as well. For the first time since this all started over 3 years ago I’m finally starting to feel normal again. My priorities have changed due to this (staying alive was the main one, finding a med that worked without killing me was the next) and it has made me realize what’s really important. I don’t see me competing again anytime soon, but at least I can start enjoying training again without being in constant pain. Hopefully I’ll be able to start putting some weight and strength back on as well.

Thank you for reading my log. It’s been a challenging journey. I can’t tell you how many people I’ve spoken with, or read about, who had to quit work and collect disability while suffering from UC.  I guess I can look at it as a positive for not giving up (OBB would go out of business if I stopped working) and for trying to keep training.  As always I realize things could be far worse.  My hope is that some of you may benefit from my experience.  Thank you to my wife, Trinity, and my training partner, Tyler Marino, for sticking it out with me. I couldn’t have made it without you. Stay tuned. I’m not done yet.