It’s a question I get asked all the time. My curt answers usually range from “not so good” to “okay”. I never really get into specifics, largely because the honest answer is rather lengthy. So in case you were wondering, or if you received one of my incomplete answers, here’s how I am.
My surgery was horrible. My recovery has been horrible. I was supposed to have my ostomy reversed by now, but that reversal is still many months away, if it happens at all. I’m angry because a world-renowned surgeon performed my operation, and it went to hell. The operation that was supposed to improve my quality of life has put me in the absolute worst condition of my life. I’m angry because everyday I see people living their lives with good health, comfort, stability, and happiness, and it makes me wonder why I couldn’t share their good fortune. People keep telling me I’m young so I’ll heal quickly. What the hell is taking so long?
Whenever I’ve start to feel a little better about things, a new problem pops up and destroys whatever little happiness I had built up. Here are a few examples. Back in July I started to feel some stability – my ostomy, my wound, and my drainage tube were all manageable. I woke up on a Sunday morning feeling good, looking forward to attending the Blue Jays game that afternoon, and then my drainage tube fell out. That resulted in a 3-day hospital stay. Last Sunday morning, I walked 10 kilometres at the Terry Fox Run. By that evening I was laid up in bed with a cold (not a surgery-related ailment, I know, but trying nonetheless). Last Tuesday, upon the advice of my GI specialist, I began taking Imodium in an attempt to decrease my high ostomy outputs. My outputs decreased by Thursday, but then I was left with pelvic pain and discoloured discharge by Friday. This has become the norm. Show a little progress, have that progress ruined by a new problem, repeat.
I don’t have a full-time job to properly support myself. I have to live at home. I don’t have a car. I need a homecare nurse to help me with my wound and my ostomy and my drainage tube. I’m as far away from independence as I’ve ever been. I’ve had to cancel plans with Jayee and my friends. I look at my skinny body and it makes me sad. I haven’t gone for a run since February, and seeing people running around my neighbourhood makes me sad. Sometimes I just want to cry but I can’t even get the tears out. Other times I think about how much I’ve let down Jayee, how useless I am, how nothing seems to be getting better, and cry uncontrollably. I wonder if I’ll ever really get better, or if I’m now resigned to a life of trips to the hospital. My life is going nowhere. My life is in ruins before and I haven’t even had the chance to build it up.
I’ve attended several IBD group support meetings over the last couple of years. I’ve heard glowing testimonials from people who have undergone the same surgery as me. I kept hearing “life is good” and “I wish I did it sooner” and “it was the best decision of my life.” I’ve heard people go on about how much they love their ostomies. I’ve heard people list off the accomplishments they’ve achieved since having surgery. Not once did I hear, “my surgery was awful and I spent months living a horrible existence before having to go back in to have the fucking surgery redone.” Why have so many other operations gone off so well while mine was shit?
In my attempts to improve my condition, I’ve sought advice from various sources, perhaps too many sources. I’ve had appointments with my surgeon, my family doctor, my GI specialist, a dietician, a psychological counselor, and at the insistence of some family member, a naturopath. The problem with talking to all of these people is that they all suggest I do different, and sometimes conflicting, things. I’ve tried to take a common sense approach and synthesize all the information I’ve received. The problem though, is that all of the suggestions aren’t really helping. My ailments remain. So why haven’t the diet changes and probiotics and supplements helped? Why am I still stuck with all the problems I had when I left the hospital some 16 weeks ago?
As horrible as my ulcerative colitis flare-ups were, I would gladly go back to the days of shitting my pants rather than continue living with the misery I have to confront every single day. People tell me that it’s too soon to judge my decision to have surgery. No. As things stand right now, there can be no disputing that it was a mistake. Every day I wake up and see all of the bags and bandages stuck to my body, and everyday I think my choice to have surgery was the hands down dumbest decision of my life. I know there’s no going back now, but that doesn’t mean I can’t regret what I’ve done.
So there you have it, a proper response to the question, “how are you?” It’s pretty easy to see why I don’t tell people the full-length answer. Maybe from now on when someone asks me how I am, I’ll just hand him or her a card with the URL to this post on it.