I had to do a double-take when I looked at my Ostomy Outdoors blog counter the other day and saw that it had hit the 500 views mark after only a couple of weeks. I never expected to have so much interest in the site. Thank you to everyone who has read, commented on, or included links on their own websites or Facebook accounts regarding the blog and videos.
I know firsthand the importance of hearing other people’s stories when facing ostomy surgery. The whole experience is a complex stew of hope, fear, excitement and worry. One needs help sorting through these feelings while trying to make sound decisions… usually while feeling very ill on top of it all.
Before Remicade kicked in to end my 14-day hospital stay, emergency surgery looked like a strong possibility for me. Fortunately, there was an internet connection in my hospital room. My nurse told me I was lucky the connection worked, because in many rooms it didn’t. This good fortune quickly became evident, as my computer became an important research tool. I found myself using most of my non-napping and -pooping hours to scour forums for information and finding like-minded and outdoor-activity-loving ostomates to contact. Never before in my life had I had the gumption to email complete strangers with my medical woes, yet every single person I contacted was so open, honest and helpful in their responses. Some of them have become good friends since.
And then there were acquaintances who either had ostomies or knew people who did. From my hospital room, I swallowed my fear and called or emailed these individuals, hoping I wasn’t forcing them into some uncomfortable position in talking about their surgeries to a relative stranger. Again, every person responded with incredible warmth and shared their stories with me. One even came up to my hospital room to show me her ostomy, scar and supplies.
Though I didn’t end up getting emergency surgery at that time, I later discontinued Remicade due to nasty side effects and had a permanent ileostomy done 1.5 months later. When I was first facing and then recovering from surgery, I didn’t talk to many people about it. It wasn’t that I was embarrassed or ashamed. The whole thing was just so overwhelming, and I didn’t know how to go about bringing it up with people. Honestly, I had to process the whole experience for a while on my own before talking more openly about it.
But then a shift started to happen over the last couple of months. Not only was I discovering the amazing improvement in my health and quality of life due to surgery, but I began to feel the need to openly share my story as so many people had for me. I started to realize that there were innumerable misconceptions about ostomy surgery. One doctor I met during my UC hospital stay told me that many patients said they would rather die than live with a permanent ostomy. I thought this was sad at the time, but after going through surgery and seeing how it has successfully ended my battle with UC while making so many amazing things possible again, I am even more disheartened by this attitude.
As I chronicle my adventures at getting back to the things I love, I wish to help people see what is possible after surgery. When someone finds they are facing an ostomy and are dealing with that complex stew of emotions, I want to help hope rise to the top. Surgery is not an end, but a beginning.
So here’s to the first 500 views! Thanks again for tuning in. Perhaps I should even have a gluten-free beer in celebration. Which brings me to my ostomy surgery worry #314: would I ever be able to enjoy a cold brew again? Answer: Absolutely!