What's It Like?

One area of research I have had a hard time finding information on is the surgical experience. 75% of people diagnosed with Crohn's Disease will require surgery at some point (source: CCFA). However, when I would search for articles, blogs, or any kind of "user reviews" on Crohn's surgeries, I mostly just found medical journals - no actual user experiences. That's another reason I'm creating this blog.

My healthcare team and I recently decided that surgery is the best option for me right now. I have two fistulas: one enterocolic fistula (connecting my small intestine to my bowel), and the other an enterovesical fistula (connecting my bowel to my bladder). The surgery, called fistulectomy, will be done under general anesthesia, and will be open-abdominal, rather than laporoscopic. This means the healing time will be quite long, and I will spend a minimum of 7 days in the hospital.

That's all I really know at this point, as far as what to expect. But I want to know more - specifically, what will I feel the moment I wake up from surgery? How much pain should I expect and for how long? What kind of tips/tricks will help me heal quickly and safely? What will life at home be like for the first few weeks? These, and many other questions that I have cannot be answered with anything other than "general" answers by my healthcare team. So, I turned to the trusty Internet, where I have always found answers.

I came up empty-handed.

I finally posted my questions to Crohn's support groups on Facebook, and received a few very general answers. "Surgery was the best thing I ever did!" "It was painful, but it was worth it." These weren't the answers I was seeking. I wanted to know about the whole experience. What's it like to go in to surgery? What's it like to wake up after the surgery? What's it like at home?

That's the ultimate reason for this blog - to give future Crohn's patients a place to find out what it's like. From surgery, to medications, to flare stories, to foods we can/can't eat, I want to share it all. And I'd eventually like to have more than just my personal experience; I'd like to have other Crohnies contribute their experiences.

Every Crohn's Disease patient has a story, and every story is a little different. This is my story.