The rollercoaster that is my life seems to hold never-ending surprises for me.
I came to a startling realization back in January; the fact that it didn't occur to me sooner simply baffles me, looking back on everything that I have been through over the past two years. I DON'T HAVE CROHN'S. The DNA diagnosis that I received from Prometheus Labs in CA was correct initially, handing down my disease as being Ulcerative Colitis. The entire time my body was fighting against the BCIR, I kept wondering to myself how DNA (which is considered irrefutable in court) could so black-and-white identify my disease process as one thing and then my body and doctors seemingly contradict said diagnosis with the evidence of my obvious illness following my multiple surgeries, interpreting it as Crohn's Disease.
I was at work one evening, and after once again pulling multiple whole "dissolvable" stitches from my body, I sat at my desk, staring at the stitches I had placed in a biohazard bag; willing an answer from the silent objects of my torture. The punch-line to the riddle finally flashed across my pain-logged brain like a laser... It was such a simple equation. Years ago I remember my mother stating to a doctor at some point in time that she was allergic to Vicryl, a synthetic yet supposedly absorbable material often used in surgery to sew up incisions. My entire battle the past two years had been against an ALLERGY. This was the very reason why the internal pouch I had been attempting to convert to was working as intended, but my body was violently rejecting it. It was forming fistulas in an attempt to force the stitches out of my body the very best way it knew how. I knew that was what was coming out of the fistulas because one evening a year before, I spent almost two hours performing surgery on myself with a pair of needle-nosed surgical tweezers, pulling out seemingly endless pieces of undissolved dissolvable stitches. My body was now full of this material I was severely allergic to, and therefore went into a massive rejection mode: it affected not only my healing and pain levels, but caused a tremendous depressive effect on my mental health. August 2015 was the very lowest point, resulting in my feeling unsafe to be alone for any length of time. Once I went back to my conventional ileostomy in September 2015, my mental health steadily improved from there. Yes, the pain is a near constant, but I no longer feel as though I am in a fog of worthlessness with no light anywhere in the vicinity. The only thing that saved me at that lowest point was an extremely selfless friend who dropped everything she was doing to get me out of my own head for as long as it took. Did I admit it at the time? Only to a few select people. I work in Mental Health. I know what happens when you admit that you feel as though you have the option(s) available to do the only thing you feel will bring an end to your suffering. But I trusted the people I did tell, and they did right by me by not freaking out and pulling me gently out of my biologically-induced hole.
So, with all my medical experience and self-knowledge, why didn't I realize my predicament sooner? The answer is simple: I had never considered the idea that allergies could also be hereditary, like my Ulcerative Colitis is from my father. And the reason the Humira worked to seemingly calm the "Crohn's" down was because the biologic was not only wiping out my immune system, it was also shutting down my histamine receptors, masking the allergy and making it look as though it was helping an autoimmune response. I outlined my theory to my primary care physician, who integrates traditional medicine with alternative therapies as the basis for her practice. She whole-heartedly agreed with my idea and urged me to seek out my local gastroenterologist. I made an appointment with him as soon as was possible, and handed him the same evidence (both literally and ideally) that I had given my PCP. True to mainstream medical care, he pooh-poohed my synopsis, stating that he still felt my body hadn't liked the BCIR, and wasn't that obvious with my marked improvement upon having it removed? And yes, to a certain to extent he was/is right, but for the wrong symptom/reason. The pouch was functioning as intended the entire time. It was the stitches that were being expelled from day one that were the only inflammatory constant. Gotta love a doctor who can't stand to be wrong. Unfortunately, just about anyone with an autoimmune disease has run across at least one physician who is this same way, whether the issue be UC, Crohn's, Lupus, etc.
The only thing I can hold to now is the knowledge that eventually my pain will subside in its entirety. I still have knots of stitch material under my skin layer, and these spots will rub internally, causing pain and a raw feeling at the site that I usually have to just grit my teeth and bear. When the discomfort becomes distracting, I have non-narcotic meds I can go to to alleviate my pain. I was on narcotics for over two years. It wasn't much fun coming off of them, but I feel better about myself that I'm not dependent on them to keep my pain in check like I was. Knowing there is an end in sight makes such a difference to the mental part of the ordeal.
I delayed writing about my realization because, as my boyfriend pointed out to me the same night I called him at work to tell him how excited I was about figuring my allergy out, everytime I felt as though I was making improvements, something else would happen and plant a boot in my chest and shove me back onto my butt (from a recovery stand-point). I wanted to make sure my theory was sound before I told anyone other than family, close friends, and co-workers. I finally feel as though I'm in a place where my allergy has been irrefutably self-proven.
I still stand by what I've said many times before: My body will find any way possible to hate me in one way or another!! At least the hate isn't systemic anymore... *shrug*
