Back on medication and mindset changes during my Crohn’s journey
It’s been over 20 years since my colon started bleeding and my inflammatory bowel disease (IBD) journey began. In 2003, I ignored the symptoms of blood, pain, and bloating for nearly three years. When I finally sought help in 2006 after a severe flare, it took another three years to reach a diagnosis. In those first six years, I was left to my own devices to try and stop the symptoms and find some way of living a normal life.
When I finally had an IBD diagnosis in 2009, I was relieved to have answers and eager for pharmaceutical help to finally eliminate my symptoms. Eventually, I ended up on a combination therapy of both Imuran and HUMIRA. I got better, but not completely. I didn’t have the uncontrollable diarrhea that kept me at home for three months during my first severe flare-up, but I still struggled off and on with pain, blood, and mucus.
I found that I had to watch my diet in order to get the most relief, and my obsession with food and supplements became fanatical. Then, after five years, I thought I had learned and experimented enough that I could stop my medications. And so, under the supervision of my gastroenterologist, I did. I was 32 years old.
I was completely free of medications for a little over a year. But, when I started living life again – enjoying food and finding myself in stressful situations that life tends to bring – I went into a moderate flare. I went back on medications for a few months and by the end of 2016, I was off all medications once again.
After that, I had multiple minor flare-ups during the next few years involving pain, mucus, and bloating, that I was able to work through using CBD, extended fasting, meditation, and extremely restrictive diets. I didn’t seek medication or medical help and thought I was doing fine. In early 2022, I was actually feeling really good and the minor flare-ups seemed to be behind me. But, as many of you can guess how this story goes, IBD wasn’t done with me. In the summer of 2022, I had my first bout of intestinal bleeding in over five years.
I tried to seek help, but the flare happened during the middle of our move from Texas to Florida and I couldn’t get set up with my new doctors in Florida without going through a few hoops with the Department of Veterans Affairs (VA). It was (and I’m sure still is) a requirement that I see my new primary care doctor first, and then she would need to put in new referrals for me to be seen in the gastroenterology and nephrology clinics – even though I already had those specialists assigned to me in Texas.
