This week has been tough. Probably the toughest since surgery. What should have been the week I returned to work and some sense of normalcy instead became the week I learned that there’s a leak in my J-Pouch, which will delay my takedown surgery for some to-be-determined period of time (at least a month, but I’m guessing more like six based on what I’ve been reading from patients in similar situations). Add in a secondary infection due to the leak, stubborn fever, body aches, odd and painful internal abdomen pressure, the worst back pain I’ve had in weeks, and repeated leaks under my stoma wafer resulting in intense stinging/irritation of my skin and the need for additional appliance changes (which I find emotionally taxing), and there’s not a lot of positive to hang my hat on. It’s not surprising that I’ve shed some tears and allowed my frustration/anger to bubble to the surface more than once.
Throughout this process, I’ve tried my damnedest to maintain a positive attitude and remain optimistic, and I’ve been 95% successful (to my benefit). For example, I credit my breezy hospital stay to my attitude and willingness to follow instruction (as well as excellent nurse care). Through the various hiccups I’ve experienced since my release from the hospital, I’ve tried to just roll with them. I’d acknowledge that whatever it was sucked, but then just move on and deal with it. I wouldn’t let frustrations fester or disappointment linger; I just kept moving forward, one foot in front of the other.
Lately, try as I might, I’m finding it more and more difficult to just put on a smiley face and keep on keeping on. It is what it is, sure. But what it is pretty much sucks. I’ve been in nearly constant pain for almost six months, and it shows no real sign of getting better. I’m going to be stuck with an ileostomy that has been a never-ending series of complications and discomfort for G-d knows how long due to my J-Pouch leak and resultant indefinite postponement of my takedown surgery. I’ve got an infection that refuses to go away and back pain, which may or may not be related, that is truly debilitating. Instead of getting on with my life and looking forward to my takedown surgery in a couple of weeks, I’m in pain and constantly worried about when the next shoe will drop. What if the J-Pouch doesn’t heal? What if I’m stuck with an ileostomy (which I hate) forever? What if the J-Pouch leak, even if it heals, means I’m doomed to a life of pouchitis following my takedown? What if the leak worsens and becomes an abscess, fistula, or some other horrible thing? What happens when I run out of medical leave at work? What does this mean for my career long-term? What if [fill in some horrible outcome]? What if this surgery was a mistake?
Fortunately, this parade of horribles, though it marches through my head daily, usually doesn’t last long. I try not to stew on the questions because I simply don’t have the answers. Instead, I try to focus on the positive (which is admittedly becoming more difficult as I continue to struggle in a stalled recovery). I’m alive. I am not sick with ulcerative colitis, which—notwithstanding the other complications and discomfort I’m dealing with—is a tremendous improvement. I have an amazing (and patient) wife who provides unwavering and essential support, above any beyond the “for worse” she promised in her vows (and despite having to bear the brunt of my frustrations and dealing with her own stresses). I have friends and family who do likewise. My employer has been 100% supportive, and I have no reason to think that will change no matter how long this recovery takes. I am financially secure. I have excellent health insurance. I have good doctors; even if they’re not perfect, I know they have the skills, knowledge, and determination to find a solution. And I know they will.
At the end of the day, I’m truly lucky. It’s just difficult to see it through the pain and complications. But this too shall pass. It has to.