Thankfully, more and more focus is happening in this area; the emotional effects of chronic illness & medical/surgical trauma. On this Day 4 of IBD Awareness Week, we look a little deeper – using some of my story.
Some IBDers may experience only mild symptoms, some with moderate to severe can do well with medications (that come with their own potential side effects though). Unfortunately, when all else does fail, many of us have needed life-saving surgical intervention; some multiple times.
Of course, this can take a toll on our mental health.
Even when you realize surgery is the only remaining option, when you’ve mentally prepared as much as possible, there are still no guarantees.
With me, meds of all varieties failed – biologics to steroids. I’d contracted cdiff yet again. I was out of options. Time to say goodbye to a colon that was literally dying to get out of my body (as per my surgeon…)
I woke up from a successful stoma creation (Ripley) but with a totally unexpected complication; I couldn’t walk. I had a new ostomy routine to learn yet no safe way to get to the restroom for basic bathroom use. I was shocked to say the least.
All the medical providers were stunned. It turned out the little shock I felt during the pre-surgery TAP block was the needle & numbing agent – numbing my left femoral nerve. It was only supposed to provide a block of my abdomen, so I could need less pain medication. That pain block did work very well BUT the anesthesiologist apparently hit my nerve in the process. He later said it was a rare complication but I’d likely have feeling back in 24/36/48/72 hours (it kept changing). The reality was, I wasn’t walking out of that hospital on my own. The feeling didn’t come back – not completely to this day, and certainly none of it without me working my butt off to regain use of my left leg.
Home health, occupational health, home physical therapy, a wheelchair & necessary durable medical equipment were sent to my home. Six weeks later, several months of out-patient physical therapy commenced & once I figured out how to stop falling on my face, I was discharged from PT. I wasn’t 100% by any stretch but able to continue with home exercise to keep strengthening my left leg and my core.
Today, four years and three weeks post op, I’m able to walk and do some yoga without falling but I still lose my balance. Thankfully, I am mostly able to catch myself…mostly. I also experience continued weakness and recurring swelling in that leg/knee/quadriceps.
I share all to say, this experience, on top of several years being dangerously sick years before the surgery, have led to PTS(D). My body gets ill even thinking about being under the knife again. The LAST thing I want is another surgery, yet it’s been highly recommended – to finish the proctocolectomy (we only did the colectomy part). I’m also considered to be high risk because: 1) I still have active ulcerative colitis (commonly referred to as “proctitis” or “diversion colitis”) in my rectum and 2) significant family history of colorectal cancers. My surgeon has referred me to professional help, so we can address my mental health concerns (and hopefully move forward).
I’m grateful for medical providers that treat the brain as much as the derrière with equal seriousness. How ‘bout you?
What’s your story?
Journal of a Warrior's Journey 