It’s Not Easy Being a Let Down

I watched another Arsenal game today, and the overriding emotion from this match seemed to be relief, rather than happiness. Relief, since the 2-0 win over Fenerbahce today sealed Arsenal’s place in the group stage of the Champion’s League for the 16th season in a row. But like the first game of the season, a 3-1 loss to Aston Villa in the Premier League, I wasn’t really geared up for today’s game. That largely came down to the fact that my ostomy has been giving me a lot of problems lately. It’s been spewing out stool like mad, making it damn near impossible for me to gain badly needed weight. On top of that, the area around the stoma hurts. Bad.

The issues with my stoma, in addition to the extensive list of other bodily malfunctions I have, led me to pull out of a weekend excursion that had been in the works for months. I was planning on going with some friends and Jayee to a cottage north of Toronto for the Labour Day weekend. When we began planning out the weekend, I figured I would be long removed from my surgery, and therefore fit and capable of a little trip. I was looking forward to it. My friends were looking forward to it. Jayee was looking forward to it. And then I let them all down when I told them I wasn’t up for the mini-vacation.

My drainage tube keeps flushing out fluids of varying colour and consistency. The area in my right buttock where the drainage tube enters the body has been sore for weeks, making it especially difficult to sit down for any long stretch of time. My wound has started healing a little bit more, but there’s still a whole lot of pus draining from it, routinely ruining the dressing. I’ve had high outputs from my ostomy, which I tried to control with medication, but the prescribed drug failed to slow my digestive system enough, and left me feeling drowsy and weak. Figures I would experience the side effects of a drug without the desired effects. I’ve been losing weight as a result of the high outputs. Sometimes I’m scared to eat because of the expected output, even though I know it’s vital that I consume more calories. I’ve had to go the ER twice this month. Now my stoma is killing me. I’m in no position for a trip to the wilderness, even if there’s a lovely lakefront cottage in said wilderness.

I’m sad and frustrated and worried and in pain and on top of everything my problems have now extended to disappoint the people I care about. Knowing that I’m a let down because of my shitty body hurts in a way that the ostomy and the wound and the drainage tube don’t. Mental and emotional pains rather than a physical one. This isn’t the first time my poor health has got in the way of my plans, especially my plans with Jayee, and that’s what makes it so aggravating. Jayee deserves so much more than what I can offer. She’s been patient and caring and patient and sympathetic and patient and understanding and patient and forgiving and did I mention patient? How much longer does she have to wait before I’m more than a specimen of a surgery gone wrong? It’s unfair for her to look forward to plans that I end up ruining time and time again. It’s unfair that after undergoing a surgery that was supposed to make me better that I’m in the worst shape of my life. It’s unfair that life is unfair.

I don’t want to let people down, but my body and my life are in shambles, and it’s inevitable that I will disappoint. My father has to keep paying for my groceries and housing, he has to keep driving me to the ER or to doctor’s appointments, and he has to watch his son live an unsuccessful, unhappy life. My friends have to see me struggle to get in and out of their cars, and they have to wait and wait and wait while I keep going to the bathroom to empty my fucking ostomy bag. My girlfriend… well… she puts up with more of my shit than anyone. She listens to my expletive-laced rants on how much I hate myself for choosing to have surgery. She tries to calm my mind when I start trying to make sense of why I won this horrible IBD lottery. She holds me when I’m crying. She tries so hard to put me back together every time I fall apart. And when she’s earned a trip to the cottage, I have to tell her I can’t go. Some boyfriend.

I’m sorry, friends. I’m sorry, dad. I’m sorry, Jayee. I’m just sorry.

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Scouring for Signs of Progress

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Tempered Expectations