Traveling home from Mayo was beyond excruciating– horrible abdominal cramping and nausea/vomiting as I could barely walk. After all the testing I had had (4 testing procedures, an ER visit, multiple appts all in 5 days) and my Stelara trough levels coming back as borderline, it was no surprise that my Crohn’s Disease had flared. I was in a frenzy and knew I had to act fast.
Within an hour of landing, my local GI and I came up with a plan to admit me at my local hospital. She asked me to consider enrolling in the POWER clinical research study in which she would reinduce me with a megadose of Stelara (6mg/kg) so as not to lose the medication and to jolt my immune system into behaving. Even though I was nervous af, Stelara is the last option to treat my Crohn’s. And what I know is that the sooner I get timely treatment for IBD, the easier it is to control disease fallout and prevent further surgery.
As I now wait anxiously for the results of my Mayo tests and this reinduction, I realize I may not know what the future holds but I can keep the faith and keep owning my Crohn’s.
For many of us, biologics are a scary venture and I totally get that because I myself have always hesitated to use biologics. But my mind changed when I witnessed Stelara giving me my life back. I can only say what I know to be true– there is no shame or stigma in taking medications. It is not a failure on our part to need medication. Deciding on biologics is a complex, shared decision between doctor and patient as to what’s best to prevent further damage from our condition(s). And as someone who has tried many meds and natural techniques without much luck, I mean this from the bottom of my heart. While side effects may exist, I haven’t experienced any thus far from the POWER study.
Truth be told, we can change not only our own lives by partaking in clinical trials and research. We can give hope, joy and peace to so many others who have been dealt the same hand we have. So, in my opinion, why not try? Own your Crohn’s, own your IBD in the name of science, research and your own well-being.
Disclaimer: All thoughts and opinions expressed here are my own. I’ve been saved by biologics and surgery but everyone responds differently. For more information on the POWER clinical study, please visit https://clinicaltrials.gov/ct2/show/NCT03782376.
**Love, Light & Peace Always**
One Comment
Manda Barger
Once again, thank you for sharing these intimate moments with us. It’s almost like your blog is it’s own version on research!
But also- THANK YOU! I’ve have been trying to put my concerns about biologics into words. The suggestion is actually what sent me to Vandy. There were so many questions I had: side effects? The process to make the biologic (remicade being mouse antibodies) and to receive it, etc. and mostly that it’s the next big step of commitment for an IBD patient. Going from taking 4 pills a day to a 3-hour IV thank you can never be late on is a big deal! But… I’m so glad I’m on it. It’s been a life saver.