I realize this blog is starting to get a little depressing, but I write it as I live it. I’m tired. Tired, tired, tired. Tired of ostomy bag leaks. Tired of stinging/burning around my stoma. Tired of having a stoma. Tired of back pain. Tired of abdominal pain and pressure. Tired of fevers. Tired of worrying about what I can eat. Tired of J-Pouch leaks. Tired of infections. Tired of CT Scans and lab tests. Tired of mucus discharges. Tired of nurses. Tired of doctors. Tired of taking medicine. Tired of not feeling well. Tired of not knowing when I will start to feel well again. Tired of the Internet and all of its “information” and “answers” about what’s wrong with me and how to fix it. Tired of people feeling bad for me. Tired of sitting on my couch. Tired of not working. Tired of not being able to walk my dogs. Tired of being such a burden on my wife. Tired of being a “such a f*cking disaster,” as I apologized to her last night during another traumatic appliance change. Tired of being scared. Tired of trying to keep it together. Tired of not being able to. Tired of crying. Tired.
I’ve been tired for awhile, but after last week’s confirmation of a leak in my J-Pouch and resultant delay of my takedown surgery, I’ve been exhausted. When I embarked on this journey, there was a schedule. Surgery #1, 8 weeks of recovery and dealing with a stoma, takedown surgery, recovery, a new lease on life. As bad as my post-surgery recovery was, as much as I hated my ileostomy, it was manageable because it was temporary. 8 weeks; I can deal with this for 8 weeks. Although I always knew nothing was set in stone and complications could arise, there was tremendous comfort in having a timeline. And now that timeline is gone. My doctor hopes the J-Pouch leak will close quickly and my takedown will only be delayed a month or so. But there’s no way of knowing. It could be 6 months. It could be a year. Not knowing is tiring. More precisely, the thought of having a shit-bag on my hip and dealing with my ever-leaky and painful stoma for any extended period of time is exhausting.
My personality requires some level of certainty. Some semblance of a plan. In the absence of either, I feel lost. And when I feel lost, I get scared. And when I get scared, I become frustrated and angry and pessimistic and cynical. Some days I’m able to rationalize these feelings away and keep perspective—I know all of this temporary. I know I have great doctors. I know we’ll find solutions. I know life will ultimately be better. But some days I can’t. Those days are the hardest.
Note: This post is not meant to cause concern or solicit sympathy. It is not some cry for help. It’s just an internal dialogue, made public for others in a similar situation. I’m OK, and I’ll continue to be OK. But this ordeal comes with a complex array of emotions and feelings. Many of them entirely new. And, from time to time, they need a voice. Only then can they be truly processed.
And to end on a positive note: I haven’t had a fever for almost three days.