Crohn’s Disease patients are like snowflakes; we’re all different. There’s no known cause or cure for Crohn’s disease and millions of people suffer silently from it every day with different triggers, different causes of pain, and different levels of sensitivity to food. We’re so unique that it sometimes feels like no one understands our individual experience with the illness.
Living with Crohn’s Disease can be really painful and embarrassing, but for me the worse part of it all is not knowing how to make it any better and feeling alone in the fight.
Crohn’s is an inflammatory bowel disease that affects patient’s intestines, stomach, and more. Millions of people all over the world have Crohn’s and about 75% of patients that have one surgery will end up having at least one more in their lifetime. I’m 24 and I’ve already had 2.
Every Crohn’s patient is different. Some can’t tolerate chocolate, while others find spicy foods set them off. Fried and greasy foods are particular triggers of mine while stress, lack of sleep, and poor diet are thought to be common triggers for scores of Crohn’s patients.
While any Crohn’s patient out there will tell you that careful attention to diet can lessen the symptoms or even send a patient into remission, every doctor I’ve had ignores that subject and leaves that discussion up to a nutritionist. Environmental factors often get put on the back burners when doctors start prescribing steroids and immunosuppressants in order to put the disease in check, but often being aware of your condition and journaling lead to mini personal breakthroughs where patients find what works for best for them.
Hippocrates once said, “Let food be thy medicine and medicine be thy food”, which is such a sublime statement. While food alone is no substitute for medical treatment, the truth is that we are starving for more data – more medicine, more knowledge – that we can use as patients to make informed decisions about our care, our diets, and our lives.
I am hungry for more ways to quantify how my disease affects my life, and vice versa.
That’s why I am using uBiome tests to track how I’m feeling during flares. I feel like using this data point of the microbiome in concert with the piles of other data that I’ve been collecting like food journals, complete blood counts, as well as activity and wellness journals, will lead to personal health discoveries. Little Eureka! moments.
Josh’s intention is to collect as much data as possible in order to empower himself to make informed decisions along with his doctors, so that in the future he can take control of life and disease. If you’d like to follow Josh’s experiences, check out the uBiome newsletter for updates or subscribe to his TinyLetter here – https://tinyletter.com/crohns.