🎧 “Reflecting on my journey with doctors, decisions about medications”
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Maybe if I didn’t get shuffled around so much. Maybe if I would have had doctors who believed me the first time they met me. Then maybe, it wouldn’t have fed my belief that I was okay.Â
On my own: When my symptoms first began, I was embarrassed and didn’t want to talk to anyone. I was also on Active Duty in the Army at that time and working under the mantra of “put your head down and drive on,” so for three years, I did just that.
Doctor #1: After my first severe flare-up, I went to the hospital, had a colonoscopy, was assigned to a gastroenterologist, and it still took two years to receive a diagnosis and start medications. Â
Doctor #2: Two years later I entered into the Veterans Affairs Health Care system. This doctor kept me on HUMIRA, but never did a colonoscopy until I came off medications three years later. His original doubt about my IBD diagnosis was noted in my medical chart, until I had a flare-up 18 months later. But there was no strong emphasis to get me back on HUMIRA.
Doctor #3: Three years later, doctor #2 reassigned me to doctor #3 (an IBD specialist), but I only had one phone introduction with him before he left and I was shuffled to doctor #4.
Doctor #4: One year later, I saw doctor #4. She did actually believe my history and was concerned that I was off medications, but didn’t actually prompt me to get back on them. I stayed in remission the two years I saw her and the only prescription she did give me during that time was for fiber.
Doctor #5: When I went in for a routine colonoscopy to check for dysplasia two years later, I found out I had a new gastroenterologist. I was never given an office visit and when I had my flare-up in 2022 with intestinal bleeding, I reached out to the GI clinic. This doctor was concerned and certainly believed me since I had a bleeding colon, but since it was during our move, there wasn’t anything to do but stress the importance of me seeing a gastroenterologist as soon as I got to Florida. Honestly, with the bleeding in my colon, I probably would have willingly gone back on HUMIRA at that point, but that chance fell through the cracks.
Doctor #6: As soon as I got to Florida and finally got to see my new gastroenterologist, he said to me, “assuming you even had it.” My colon had stopped bleeding and he only felt the need to look at the two most recent colonoscopies that were “normal.” He didn’t even read them thoroughly because one colonoscopy report clearly stated a recommendation to have colonoscopies every 1-2 years to check for dysplasia and the other report noted slight decrease of vascular markings “suggestive of treated disease.” Or maybe those words led him to believe I made everything up. I felt truly dismissed by him.Â
Doctor #7: My primary care provider had to advocate for me to be assigned to a gastroenterologist in the VA’s community care network, and this is the doctor I have now. I was so frustrated at this point before meeting him that I brought in a printed timeline of my colonoscopy and disease history, complete with excerpts from the pathology reports (he liked it and scanned it into my record). He believed me, he listened to me, and I finally feel like I have the care I need. He didn’t say much when I first met him and I said I wasn’t on medications, but he did a colonoscopy to make sure there wasn’t any active inflammation. When I went into this moderate flare-up two months ago, he ordered labs, saw me in the clinic, and recommended restarting HUMIRA and this time, I was ready. (Although, the VA changed their national formulary recently and switched the prescription to HADLIMA, which I actually really like.)
I’ve had to “prove” I have IBD multiple times in my journey to be taken seriously. Perhaps the doubts of those doctors settled into my subconscious over time that I was fine and could keep doing what I was doing. I only had minor IBD symptoms that I could convince myself weren’t a big deal, so I kept those to myself…probably because of the “put your head down and drive on” mantra that was ingrained in me.
Without being in a moderate or severe flare-up, I honestly don’t know if any of my doctors would have put me back on medications. Looking back, I think I eventually got stuck in a position of waiting for a flare, and hopefully not a severe one.
As you can tell, I’ve been reflecting a lot on my entire journey during my flare-up these past two months. Passing blood and mucus twelve times a day brought back the fear and reality of how bad things had once been for me.
I don’t blame anyone, myself included, and I don’t regret things (I try to make that a general rule in my life, those states of being don’t serve me). I went down the road I did, and I can’t change the past. But I can look forward. I’m incredibly grateful that this flare-up wasn’t worse than it is and I’m grateful to be back on a biologic. After just one week since my loading dose, I feel wonderful. Interestingly enough, I think it’s actually working better this time around, so perhaps there’s something I’ll have to dig into later!
If anything can be gleaned from my story, don’t be afraid to admit when something isn’t working and always advocate for yourself and the care you need.
Until next time, be strong, be grateful, and keep going!
P.S. I thought this was going to be a really short post when I started, but apparently not!
