Going From 0 to 100: The IBD Rollercoaster
By Maria Mutka from NC, USA
I was planning on writing this article about the meaning of IBD community support in my life. But as all IBDers and folks with chronic illnesses know, sometimes the best laid plans have to change based on how you're feeling.
I recently had a wakeup call from my complacency during the longest remission of my life. My biologic medication has done such wonders for not only my daily quality of life, but the impact of my ulcerative colitis on my body. I will never forget my doctor's amazement at my last colonoscopy a couple years ago when they were unable to identify any active disease.
When they said they could no longer see any ulcers, I was on cloud nine. Apparently, hundreds of ulcers that had taken root in my digestive system had vanished. A true miracle drug. Since I started my biologic medication a few years ago, I have had occasional hiccups, but my symptoms were 95% reduced from what they had been.
Due to a switch in my modality of medication, from an infusion to an injection pen, I have had some delays in receiving the medicine, largely due to a lengthy prior authorization process (nothing new for many IBDers and folks with other chronic illnesses). Because of this delay in getting my treatment, I started experiencing my old pattern of symptoms, seemingly back with a vengeance.
Nausea, near vomiting, extreme cramping, frequently going to the bathroom - the works. Maybe it was just because I haven't had these symptoms in a while, but I truly felt the worst I have felt in a couple years - at my lowest of lows health-wise.
This was undoubtedly compounded by my recognition of the precarity of my health, the delicate balance that my health rests on daily in managing my IBD that I had neither realized nor accepted. Just by going a week without my medication, slightly spicy foods that I have come to enjoy on occasion since my remission knocked me for a loop. Having these symptoms after being only seven days overdue for my medication put me in disbelief - how could my ulcers and inflammation be all gone, as my doctors had told me? My ulcerative colitis seems to have been barely there, perhaps hiding underneath the surface, waiting for one slip up or mistake in receiving my medication to rear its ugly head.
Now I can fully acknowledge that experiencing some of these symptoms for a little while is not much in comparison with what I've experienced in the past, or what others often go through. I am extremely grateful to have access to the medication I need to maintain my health and quality of life. But I cannot again take for granted how close I can be at any given moment to another flare. Even when I have been doing extremely well for several years on a medication that clearly is highly effective for me.
These moments are important reminders of the truly unpredictable and chronic nature of the disease, and how, even when you are doing everything you can to maintain your health, it's ultimately not always up to you. It is, however, a lot easier to deal with emotionally if you take the journey one step at a time and prepare yourself to experience the one thing that IBD can predictably be: unpredictable.
Featured photo by Digital Buggu from Pexels.