Regrets

softballNow that I’ve covered the shit show that was my stay in hospital, I hope I can be a little more reflective and maybe even a little more personal about my new life with a newly constructed J-pouch and ileostomy. Not that my last posts weren’t personal. I mean, how much more personal can you get than a rectal tube? Am I right folks? Okay, on with the show.

I have regrets about the decisions I’ve made in my life, I think most people do, but for the most part they’re “aw shucks” regrets, not Prozac regrets. Back in the fall of 2005, soon after I moved to Halifax for a new job, I was offered a job I applied for earlier that summer. The job offer was from a radio station in Fort McMurray, Alberta. I wanted to take it, but it would have been a real dick move to accept the job in Halifax and then bail after a couple of weeks, leaving the company that entrusted me with the new position scrambling to fill it. So I stayed in Halifax, and am in fact very happy I did. I got to work on-air full time for a couple of years, I made some wonderful friends, had some amazing experiences, and thoroughly loved living on my own in a one-bedroom apartment in a peaceful neighbourhood. Still, I wonder where my career would have gone had I taken the job in Fort McMurray. But more often, I wonder whether I would have developed ulcerative colitis.

My first bout with UC came in 2007, over a year after moving to Halifax. I had never had any notable gastrointestinal ailments before, and I do wonder whether it was something in the Haligonian environment that triggered my disease. It’s just a curiosity though; I haven’t tried to look for hard evidence, but I’d like to someday. And to be clear, I’m in no way suggesting that living in Halifax caused my disease. I remember Halifax more for the good great times – walks around the city and across the Macdonald Bridge, hours spent watching the waves at Herring Cove, playing on my workplace’s softball team (and posing for awesome photos), playing basketball at Halifax Commons, running up and down the hilly landscape of my neighbourhood – than the horrid couple of months during which I dealt with my first flare-up.

What’s all this got to do with where I am now? Well, just like I have regrets about my past choices on jobs and living locations, I find myself regretting my latest choice – to have surgery. Again, it’s not a Prozac regret, but again I do wonder what if I had stuck to Remicade for a few more months? What if I had tried Humira? What if I had enrolled in a fecal therapy study? Maybe my body would have been able to survive in a state far greater than the one I find it in now. I try to remind myself why I didn’t opt for these paths:

  • Remicade was already showing signs that it wasn’t working, and I had spent over a month in a flare up while on the drug, even though there were some signs of improvement.
  • Humira would be another expensive drug that, knowing my luck, would wear off after a short time. Even if it didn’t, that meant a drug dependency for the rest of my life, and one that carried side effects including an increased risk for certain types of cancers.
  • Fecal therapy is a pretty mind-blowing concept, as long as you don’t have some sort of hang up about a stranger’s stool being injected into your body. I didn’t have any problems with the yuck factor, but my concern was that since this treatment is still at the research level, I’d receive a placebo instead of the real thing. Further to that, if the treatment worked, how would I get it after the study was complete?

I made the decision to have surgery because I was sick of going from one drug to another and having it fail. I was sick of my life being interrupted with flare-ups. I was sick of being dependent on medication. I was just sick of the five-foot tube of fuck-ups that kept screwing up my body and holding me back from doing the things I want to do in my life.

While I was in hospital, and even now as I recover at home, I wonder whether I made the right decision. I was persuaded to have the surgery from a number of people who have had it done and raved about it. I kept hearing things like, “It was the best decision of my life,” and “I only wish I did it sooner.” Plus other alluring statements like, “I’ll eat anything that isn’t nailed down,” and “Now I’m on a seafood diet. When I see food, I eat it.” Talking to folks who have succeeded with their J-pouches was encouraging, but in retrospect, not a well-rounded strategy. I ought to have sought out the stories of folks who haven’t had it so well, to know just what I could really be getting myself into.

Over the last month or so, I’ve experienced the worst physical pain of my life, vomited litres of black and green liquid, had holes opened in my body, had tubes jammed into just about every orifice of my body, and lost 20 pounds. I’ve felt weaker and sicker and in more pain than ever before in my life, and that includes the six years since my first encounter with UC. The cure has been worse than the disease, in many respects, so how can I not regret my decision?

Well, the hope is that my body will recover. That I’ll regain my strength and vigor and yes even my weight, at least what little I had to begin with. That I’ll be able to run and work and rediscover my independence. That I’ll be able to live a life of value. Maybe years from now I’ll look back on this time of my life in the same way I look back on my time in Halifax, remembering the happiness much more than the hardship. And maybe someday down the line, I’ll be like those smiley, satisfied J-pouch customers who made my choice seem like such a no-brainer.

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About rasheedclarke

Award-winning author. Marathon runner. Exceptional dresser. I'd like to be all those things.

5 comments

  1. Hi Rasheed, I hope that you’ll “be like those smiley, satisfied J-pouch customers.” I did not have all the same things happen to me, but I’m there with you on having complications when others just breeze through the process of these surgeries. It’s hard not to think “what if ” even though we both know a choice was made and that we will get through it.

    Take it easy and do things you enjoy 🙂

    Faith

    • Hey Faith, thanks as always for the encouraging words. I read a story from someone who had the first J-pouch surgery and left the hospital after 3 days. Unreal. I’ve actually been feeling a bit better lately now that I’ve made some dietary modifications.

      And writing this blog is something I enjoy, so you better believe I’ll keep on doing it!

      Hope your recovery is going well!

      PS. That copper butterfly necklace was a sweet find!

  2. Hey Rasheed,

    I just got caught up with your latest blog posts and want to tell you what an inspiration you are. I also truly hope that you’ll end up as one of the smiley, satisfied customers as well! Reading through your posts, I was in awe of everything you had to go through and how you just kept going and the way in which you so eloquently wrote about it afterwards. Not only are you an inspiration to other people with UC and those that have undergone the same procedure, but you’ve inspired me to get back to documenting my own personal crisis from last year and my own hospital stay. You’ve inspired me to become more connected to my own cause, so thank you 🙂

    Wishing you all the best in the next steps in your journey,

    Lucy

    • Lucy, I’m flattered. Thank you. I didn’t know about you being in hospital. I hope things are better now, and I would like to hear about what happened if you do choose to document it.

      I started eating a slightly wider range of foods lately, and I think that’s helping my recovery. Plus I’m drinking Ensure, and that’s been helping, even though it makes me feel 73 years old.

      • That’s the thing – I’ve never really openly talked about it, but I want to change that, and you’ve inspired me to do so! When I end up writing about it I’ll be sure to give you a head’s up 🙂

        And awesome! What have you started eating? It’s all about baby steps…. And hey the 73-year-olds in those Ensure commercials look like they’ve got it all figured out. If it helps, who cares!

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