This post appeared on ww.nickboxwell.com.
Today is the two-year anniversary of the day that I almost died. My last blog post about coming to terms with the loss of my colon was no guts, no glory. This is a follow up on how I’m faring.
To start with, my reversal/pull-through surgery was last August and while the surgery itself went well, my recovery was harder than expected. In a lot of ways, it was more physically and emotionally painful than my original hospital stay. A typically four-day hospital stay after tying my insides back together (minus the large intestine, R.I.P.) turned into eleven. Most of my intestines had reawakened from surgery but a small section did not. That condition is called ileus. What happened is that any food or water I was taking in, then backed up. I spent a few days vomiting which were some of the scariest moments of my life. My mind was immediately taken back to the day that my colon burst and a lot of forgotten memories surfaced again. Meanwhile, a mysterious strange pulsating pain in my abdomen would start swelling to a 9 and then back down to 4. It would come and go throughout the days before eventually settling down when the ileus finally cleared itself and I was able to start passing stool like a normal person for the first time in over a year.
With the pain gone and able to process food as normal I was finally sent home. But even though I was happy to finally leave, deep inside I felt like something was wrong. The first visit with my surgeon went okay, although my stoma site was left open and packed with gauze because it was oozing way more than expected. After two weeks at home, it was oozing even more — just a straight up dark fluid with what looked like food particles. I knew what was happening but tried to keep calm when I visited my surgeon again. I don’t think I’ve ever cried that much in my life. He confirmed what I already knew. I had what is called a fistula — my body tore its own opening from my small intestine to my open wound. Looking back, that’s probably what the extreme pain was while I was in the recovery ward. The leaking intensified over the next few weeks and gauze wouldn’t contain it anymore, I had to go back on the bag. Or rather, the bag had to go back on me.
I was told that I could expect a 50% chance the fistula would heal itself over the course of a year. Surgery was not recommended before then because that is exactly what encourages fistulas to form. I attempted to go back to work, despite being very lethargic and slowly losing weight. I resumed a low residue diet to let my insides heal. Back when I had an ostomy for a year, the thought of finally getting the reversal and becoming semi-normal again was the only thing getting me through all of the pain and embarrassment. To have gone through all of that only to wind up in even worse pain put me into the deepest depression I’ve ever been in. I spent most of my free time in my bed sulking or crying, in so much pain I could barely move. I popped painkillers to get me through a few days of work here and there but took extra time off (causing financial difficulties I’m still trying to catch up with). Things looked even bleaker when a second fistula suddenly opened itself up over my groin. I genuinely wanted to die.
It was probably the lowest point of my life and I am happy I patiently waited through it. Eventually, very slowly, my fistulas healed closed. It took a few months before I could go without a bag again, and several more months of just replacing gauze a few times a day. Eventually, there was a day when my gauze was clean and dry after 24 hours, and I felt like things were really going to be all right.
I’ve had a few colonoscopies since then, and even though my doctor was preparing me to be put on immunosuppressants, his last look reveals that I no longer have any active disease in my intestines. This was a few weeks ago now and just that diagnosis has revived my ability to enjoy life again. There’s still a little pain across my scars and I tend to run out of energy pretty quickly still, but I’m slowly learning how to be healthy again and trying to tie up some loose ends and projects that have languished during my downtime. In addition, I have some large personal projects in development such as a stop motion film and a photo series that I was awarded a grant for.
Stay tuned everyone, I’m feeling like I’m back.