I'm happy to say it's been about 6 months since my last recovery update. Happy because that means I've been well enough to get back to a full work and training schedule - leaving me with a lot less time to fill with writing. At 8 months post op, life feels about as back to normal as it will ever be.
Medically speaking I'm doing well. I continue to be in amazement of the gift of time this surgery has given me. To shed some light on what I mean by the gift of time, in the last 6 months I have had 3 medical appointments. In the 6 months leading up to surgery I had 45.
Including driving and time spent waiting, at a loose estimate that means in the past 6 months I've gotten back about 45 hours of free time that I now have for the things I'd rather be doing. I love that fact.
Ostomy care has become just another part of my routine. What would take an hour, a great deal of stress, and a giant mess a few times a week in the beginning I can now get done in 5 minutes.
Shown in the photo are some of my supplies. I show them because I don't think people realize just how much goes into maintaining an ostomy. I had no idea. Having an ostomy means I am eligible for the Ontario Assistive Devices Program. It covers about 40% of my medical supplies. It's not spectacular but it's better than nothing.
The 3 aforementioned medical appointments all happened to fall in the month of November.
The first was a meeting with the surgeon who will do my future surgery(s). It/they will be done at Mount Sinai as the next surgery(s) are much more specialized than my first which has been described as "damage control". Dr. D is one of the best colorectal surgeons in the area, and definitely someone I want on my team. I have a big decision to make down the road in regards to which surgery I will choose, and I'm not ready to make a decision yet. The first option would make my ostomy permanent by removing everything that was left during my first surgery (part of my sigmoid colon, my rectum and my anus). The second option involves the construction of an internal pouch made from my small intestine, a temporary new kind of ostomy (loop ileostomy), and a final surgery that would reconnect everything and allow me to use my butt again. Both options are major surgeries, and the thought of surgery in general is extremely daunting at this point, when I'm just starting to feel like me again.
To an outsider I think it seems obvious that I would choose the reversal option, but the reality is not that simple. My bathroom process will never be "normal" again, as it doesn't give me back my colon, just the outward appearance of normalcy as in I won't have a bag attached to my tummy. It also comes with it's own risk of complications and the thought of making my condition worse when I've been doing quite well with my stoma is scary. The thought of making my stoma permanent is equally scary. I'll continue to park my dysfunctional bum firmly on my fence where I'm holding steady for now.
On the neurologic side, I had an MRI and a follow up with my amazing neurologist (Dr. A) who I think is the greatest thing since sliced bread. It was fine news - the damage in my neck is stable, no change from my previous MRI. They are watching a small, maybe new maybe always there spot in my brain that may or may not be significant. My diagnosis remains Transverse Myelitis. Day to day, my symptoms are mostly better, with the exception of some numbness in my feet, and some minor balance deficits. Some of my more troubling symptoms re-visit me transiently, each time giving me a small panic. I'm hyperaware always that if my symptoms were to really worsen it could mean a second attack and my diagnosis could change. Despite that I'm choosing to not live in fear of the what ifs and take this one day at a time.
Something magical occurred 2 months ago, right around 6 months post op. I noticed a sudden and obvious increase in my physical healing. One day sneezing was painful and left me in fear of developing a parastomal hernia (they're nasty and happen in as many as 78% of ostomates, mostly in the first 2 years following surgery). Then the next day I was able to sneeze confidently and without pain. I'm sure the strength I've been working so hard at building in the gym has helped, but I also believe something magical occurred with the passing of time.
I'm working with an amazing strength coach who understands my limitations and also knows when to push me beyond my self imposed beliefs of what I can achieve. With Matt's guidance I'm making huge gains. Recently, I have conquered 1 unsupported chin up, and I am close to deadlifting my bodyweight. I build more trust in my core by the week, recently opting for lifting without the support belt that I heavily relied on before sneezing got less scary.
I have recently reintroduced running after taking a break for the winter (it was not agreeing with my stoma and felt premature so I changed my goal to building strength). So far so good! Looking forward to seeing what the running season holds for me with my new super strength. My first race will be the Compass Run for Food 5k in June. Please consider donating as this amazing event raises funds for our school breakfast programs and food banks here in Dufferin County.
I've said it before and I'll never stop saying it, our capacity to adapt mentally, physically, and emotionally as human beings is nothing short of remarkable.
XO E