As 2013 is coming to a close, I’m reminded of what a year it’s been for me. I don’t always have the chance to reflect on my life, since Crohn’s has made it nearly impossible to live outside of the pain for the day, but 2013 has offered both extreme lows and highs where my health is concerned.
At this time last year, I was spending time at my parents house because my illness became too much for my wife and kids to handle on their own. The non-stop pain and physical deterioration of a loved-one wasn’t something that anyone should have to experience, and they’d been through enough. Fortunately for me, my parents live down the street from a medical plaza, which had a gastroenterologist, family doctor and, as luck would have it, a digestive disorder clinic. This combination started a chain-reaction that would lead me to where I am today.The year-end holiday of 2012 was spent bed-ridden. I had gone through months of frequent, urgent, liquid stools; dry heaving and vomiting; bouts of extreme abdominal pain and severe weakness due to anemia. As soon as New Years rolled around, I began a drug trial for Humira, but the first step was Prednisone. Prednisone is like a power-up you’d expect in a video game – you get a short-term boost at the expense of something down the road. Within days of taking it, my symptoms had nearly disappeared. For once in many years, I had been able to go to a store and eat without pain or vomiting. Unfortunately, the fun didn’t last long and as the weeks past, I started to get side effects that eventually led me to be taken off prednisone earlier than expected. From about Feb to June of 2013, I was taking Humira and having frequent follow-ups with the clinic. As the prednisone wore off, I could feel my symptoms returning, despite being on weekly Humira shots, which is the maximum frequency.
In late June, I had a follow-up colonoscopy and the outcome was far worse than we had expected. The reality was that surgery wasg my only option to reduce the damage that the disease had caused. The upcoming ileostomy, scheduled for Aug of 2013, was intended only to remove the highly-damaged parts of my gut. As a side-benefit, I would start feeling better once those disease parts were removed and on Aug 21, 2013, I had my colon removed. It was also the same month I started the Veganostomy blog :)
The first month post-op were quite difficult. There was quite a bit of abdominal pain and soreness, and the lingering effects of the anesthesia kept me in perpetual lameness and exhaustion. By week 5, however, I was up and about, and my wife and I celebrated our 11th Anniversary on a 4km hike, followed by a drive-in movie. It was a HUGE difference from just months earlier, where I was too sick to even walk up stairs. The months following my ileostomy were filled with adjustments, research and excitement as I was doing more and welcoming back parts of my life that had been on hold because of Crohn’s disease.
In November of 2013 I had my rectum removed, which was part of the plan before my ileostomy surgery. This procedure was a bit more difficult to recover from as I was tethered to a vac unit (to heal the wound) for about five weeks and during that time I was very uncomfortable and dealing with issues using the vac (it turns out my unit was not functioning properly). In mid December, my surgeon found a minor complication that got me off the vac, but started me back on daily nurse visits to pack the wound. This change of plans means that I won’t be fully healed for New Years, but I should be good to go by spring time.
What does 2014 hold for me? I hope at the very least an active, activity-filled summer.
Wishing everyone a safe and happy New Year! May 2014 bring you happiness, success and good health.