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.
By the time I got to see my new doctors, my symptoms had fortunately gone away and I was back to feeling good. But, that only got me dismissed by the VA’s gastroenterologist and another four month wait to get assigned to a gastroenterologist in the VA’s community care network, thanks to the help of my primary care provider.
For the past year and a half, I’ve been well. But we all know that IBD is a disease of remission and flare-ups. Fast forward to today, not even a full two years later, and I’m back in a moderate flare. This time, while it’s not the worst I’ve ever been, it’s the worst I’ve been in a long time. For the past two months, I’ve been passing blood and mucus up to twelve times a day, frequently nauseous, fatigued (so fatigued!) with low iron saturation showing on my lab results, experiencing intermittent pain and extreme bloating (my fellow IBD warriors know what I’m talking about), and feeling pretty lousy overall. Even my kidney function has declined (it’s still fine and we’re still watching it, but I find it interesting to see distinct changes in my lab values while my body battles inflammation from Crohn’s).
I’ve still been able to leave the house and do things, but the dread of being anywhere not close to a bathroom is back. I’ve been avoiding meals with friends, fasting a few hours longer than usual if I’m going to be out run
