Stephanie Gish solocast: Back on medications (E98)
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 running errands, and wondering what foods are causing my pain this time.
It’s been almost ten years since I was on HUMIRA, and during that time, I’ve changed.
For starters, I don’t want my life to be controlled by my diet. I don’t want to go back to being obsessed with food and every single bite I put into my mouth. My health journey is more complicated now. I’m on medication to lower my blood pressure and hopefully stop IgA nephropathy from causing further damage to my kidneys. I’m taking omeprazole to relieve symptoms of silent reflux, which is causing inflammation in my esophagus and stomach. And that little thing we call stress, which is also my biggest IBD trigger, is not going away – no matter how much sauerkraut I eat or meditation and yoga that I do.
I still think diet and lifestyle play significant roles in overall health, but I accept and recognize that at this point, I need more than that.
In my current state, I’m reluctant to use some of the supplements and methods I tried in the past. Now that I’m on blood pressure medication, I don’t feel safe doing periods of extended fasting because my heart rate drops low and I get lightheaded if I go longer than sixteen hours fasting. So many products have warnings against taking them if you have kidney disease and I don’t want to accidentally take an herb or supplement that either lowers my blood pressure even more or causes additional damage to my kidneys. I don’t have the knowledge or expertise to start combining natural and pharmaceutical treatments; it’s not a road I want to travel. Finally, even though daily meditation has numerous benefits, it doesn’t eliminate stressful situations from happening in life. People get sick, work has deadlines, and travel or new experiences can cause anxiety, even if they are exciting adventures.
So this time, I’m ready.
This time, I’m not starting medication with one foot out the door. I don’t want to wonder what damage is being done by inflammation in my body during minor flare-ups that I try to ignore. I don’t want moderate and severe flare-ups to prevent me from enjoying life. I want to live my best life and I’m ready to do that with a biologic medication again.
When my symptoms began in early March, we were out of town, so I waited a week to contact my gastroenterologist. When I reached out, he ordered some blood work and a fecal calprotectin test. My CRP was quite a bit higher than my baseline levels, but still considered within the normal range. My calprotectin, however, was definitely high.
So, with my symptoms worsening and a high calprotectin test, my gastroenterologist recommended it was time I go back on medication for Crohn’s and I agreed with him. I was finally able to receive my loading dose of HADLIMA this past Friday, April 26 (a biosimilar for HUMIRA that was introduced to the U.S. commercial market on July 1, 2023). My doctor did actually prescribe HUMIRA, but I learned that the VA announced in February that they selected HADLIMA (adalimumab-bwwd), a biosimilar, to replace HUMIRA on the VA National Formulary.(1) It’s my understanding that the change took place just this month.
As an aside, over the past week I’ve spent a lot of time on Google catching up on the progress that’s been made in the last ten years for IBD medications. I’ve learned quite a bit about biosimilars, biosimilars with an interchangeability designation(2), and JAK inhibitors that I’ll try to write about in a later post!
Even though it’s been less than a week since I took my loading dose of HADLIMA, I’m already starting to feel better. I know there are risks that come with medications, but there are risks that come with natural treatments and even greater risks when inflammation in the body isn’t treated at all. I can’t see the damage that may have been done when I ignored minor flare-ups during the years I stopped HUMIRA, but I know I don’t want this current moderate flare to take a turn for the worse and I’d like to try and prevent them altogether in the future.
It’s been a long journey with Crohn’s disease and I know it’s far from over. As I reflect back to my first six years with IBD and being left on my own to manage symptoms, I now wonder if I would have been so determined to come off medications ten years ago if I would have received the help and diagnosis I needed at the very beginning. I don’t know the answer to that, but what I do know is that as life goes on, we evolve, we grow, and things change – including our perspectives and even beliefs we once held so tightly.
I’m ready now, and I’m grateful. Grateful to have a supportive gastroenterologist who listens and actually believes me, grateful to have access to medications I need, and grateful for a clear path ahead for this next chapter.
https://www.formularywatch.com/view/the-va-replaces-humira-with-hadlima-on-national-formulary
https://www.organon.com/news/samsung-bioepis-organon-announce-fda-acceptance-of-supplemental-biologics-license-application-sbla-for-interchangeability-designation-for-hadlima-adalimumab-bwwd-a-biosimilar-to-humira/
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