Posted by ImproveCareNow™ on September 25, 2024
by Autumn
When I received a MyChart message from my GI, suggesting we consider changing my Crohn's treatment, it hit me like a bullet straight to the gut. I wasn't expecting it. I did not have any symptoms of a flare yet, but labs and scope biopsies said otherwise. I received that message while waiting for an appointment, just one minute before my doctor came out to get me.
Reading that message, my body quickly filled with anxiety and my mind with so many questions. I never thought I would have to change treatments and, if I did, I thought I would only ever change to help with pill fatigue and the number of pills I have to take, not because my Crohn's was requiring me to.
I have always managed my IBD pretty well, with only occasional flares, and because of that I have always thought, not me. I have always felt like my only IBD symptoms are belly pain and urgent need for the restroom and that the tiredness and low energy I've been experiencing can't be from my Crohn's; this joint pain I've been having can't be from my Crohn's; my iron isn't low because of my Crohn's. I've always had pretty good control of my Crohn’s, too well for any of these symptoms to happen to me…but I'm learning, that's just not true!
I've always had pretty good control of my Crohn’s, too well for any of these symptoms to happen to me…but I'm learning, that's just not true!
I have invalidated many of my symptoms, for as long as I can remember, and I never thought there was any chance of ever having to change my treatment. I thought I would be that one IBD patient who takes mesalamine daily, forever, and occasionally budesonide when I flared. Recently though, it's been quite an effort to get my inflammation back under control. The mesalamine doesn't seem to be working anymore, so the talk of changing to another medication began.
I couldn't believe it when I read the gentle suggestion to consider changing to a different type of treatment, one I've heard of many times but knew nothing about. I never saw it coming! I expected to read a message that suggested starting budesonide again or increasing my mesalamine, not one that said to consider starting a medication I was set on never having to be on.
I felt scared and nervous and my anxiety was at its highest. A hundred questions were running through my head, silently.
❓ What is this new group of medications?
❓ Am I going to get sick easily now?
❓ Will I encounter side effects?
❓ What about my future, will I still be able to have a family like I've always wanted?
My mind was drowning in thoughts, feelings, and what felt like an endless number of questions. I felt very overwhelmed.
Thankfully, I have an amazing IBD team and having an integrated visit with my GI and psychosocial provider, to learn more and get answers to all my questions, helped things feel a little lighter and less overwhelming. I was reassured many times that I did not have to make a decision at that moment, and I could decide when it felt most comfortable for me! Having psychosocial support was important for me and was a very helpful piece in my process and decision.
Soon after making my decision, I learned that some other things happening in my life were having an impact my feelings about treatment change, making it louder. So, I want to recommend to anyone who might be facing a big decision like this one, to give yourself time and space to process through any other life things that are going on before jumping into a big decision like treatment change. This might help it not feel super overwhelming like it did for me.
Before going through this experience, I said that will never be me…I'll never change my medications; I'll never experience those symptoms; I'll never have that issue. And now I say never think it can't be you. In the words of my absolute favorite artist, Justin Bieber, Never say Never…because now, it is me.