A lot has happened since my last update in March.
In late March I developed some new neurologic symptoms. I have a number to call at the MS Clinic at St. Michael’s for exactly this reason. As it stands, my neurologic diagnosis remains Transverse Myelitis – but if I were to get a new lesion in my brain or spine this diagnosis could change to Multiple Sclerosis. The new symptoms disappeared 6 days later, and then reappeared just before I went in for an MRI of my brain and entire spine (typically they don’t do the whole thing but changed the plan based on the location of the new symptoms). The scan was on a Thursday. On Sunday, a rash appeared in the same area and I suddenly clued into what was going on. On Monday morning I was able to get in quickly to see my GP, who diagnosed me with shingles and started me on an antiviral. While I don’t recommend getting shingles, I was relieved that the symptoms were related to this, and not something more sinister.
A few weeks later I met with my neurologist and after learning about my shingles her response was, “wow. You really get a lot of things” 🙃
Touché, doc.
The MRI revealed nothing new (phew), and all is stable in the 2 spots (the main one in my neck we think was caused by a medication, and one small spot in my brain that remains a mystery and may have been preexisting and irrelevant). Stable is great.
On July 7th I celebrated my one year stoma-versary. I celebrated with a photo shoot. Many were just me and my bag, but Jason and Kody were able to join me at the end for some family shots.
This summer has been amazing with lots of outdoor activities – running, swimming, stand up paddling, and slacklining. At one year post op I would say there is very little I can not do, I even figured out it’s safe to dive with my stoma bag. It doesn’t in fact, fly off of me as I pictured might happen. My physical health is the best it’s been in years, including running. On Labour Day I ran in the Island Lake Classic with my family (now a tradition after my comeback race last year). I managed to take off 10 minutes from last years time, and win 3rd female overall. The podium finish surprised me but I’ll take it! To my knowledge I’m the first ostomate to ever podium at the ILC.
In August I went for a scope of my rectal stump (and the 10cm of sigmoid colon that remains stapled off inside of me). The procedure while quick, was extremely painful due to the level of inflammation in there. The result: “diversion colitis / concerning findings. Follow up to discuss surgery”. So in late August I met with my surgeon at Mount Sinai. If you recall in March I was still on the fence with which surgical option to choose (one reconnects me, and the other makes my stoma permanent).
A lot has gone into making this decision, and it’s a topic for an entire other post (stay tuned), but I have made the decision to go ahead with the Proctectomy (removal of my anus, rectum and remaining colon). This will make my stoma permanent. This surgery will take place sometime this winter, date pending. While I’m not looking forward to another major surgery and recovery, I am looking forward to getting rid of the disease (hopefully forever), closing this chapter and moving forward.
I have been sharing my journey on Instagram, where I have connected with so many Ostomates from around the world, many who have gone through or are on a similar journey. Joining this “club” that none of us wanted to be a part of has been the silver lining of my journey. To be able to learn from others and share my story to support others has brought meaning to this journey like I never could have imagined. Just this week my page grew to over 1100 followers – 1100 humans who I am hopefully helping in some way.
XO E
My Dear Erica, No one should have to go through what you're having to go through! I admire you so much, your positive attitude & your ability to carry on. Keep your eye on the end ball! I love you Sweetheart! Judy
You are such an inspiration my dear Erica ❤
And, I love the family picture!
Janis
There are many reasons I admire you and your fight for good health. The main being your absolutely determination and willl to overcome and defeat this awful disease . While still living a challenging physical life
You have my total admiration