I went into my first surgery at the age of 15, at 125 pounds and other than ulcerative colitis, I was generally healthy. This wasn’t done when I had been sick for months and months, was severely underweight, or anything like that. I went into this surgery as healthy as a person who needs to have a major organ removed could. That, in and of itself, gave us all hope too. I was strong.
I am sure some of you are asking yourselves if I wasn’t in a this dyer state than why did I even need the surgery?
And the answer to that is because I was all out of medicinal options and thankfully, I was able to have surgery before things got too bad again.
During a conversation with my mom about market research and how much the work she did was similar to what I was doing in the inflammatory bowel disease community with Janssen Biotech, only from the other end of it. She said she would have a ton of questions for me as a researcher.
As most of you probably know, I am working with this pharmaceutical company on an ongoing basis to help raise awareness and make life better for patients and caregivers who are suffering from Crohn’s Disease or Ulcerative Colitis.
The first question my mom said would be “Why am I doing so much work for a company whose primary drug and focus for IBD failed me?”
It was strange but I never thought of it from that perspective. My mom said she knew me well enough to give a short answer to her question which was “you don’t blame the drug, you blame the disease.”
While she was absolutely right, it made me think even deeper.
Prior to surgery, I had a mark drawn on me where they might put an ostomy. Given how strongly my parents (especially my dad) felt about me having this done in one surgery, I wasn’t too worried about waking up with an ostomy. I obviously had no clue what it really was and didn’t want it, but between my dad voicing his very strong feelings about it numerous times and me going in there healthy and feeling semi okay, I wasn’t afraid of having a bag. My surgeon said he would do everything he could which meant to me that it wasn’t out of the question. I took that as a VERY good sign.
Remicade may have failed me but it also made it so when I went into my first surgery, I was relatively healthy and strong. I vividly remember laying in the hospital with my parents, surgeon and GI when I was 14 years old (the year before.) I was so so sick. I couldn’t imagine how I would have made it through then.
I am not saying that the state in which you go into surgery controls the outcome. We all know anything can happen; positive or negative. I had complications the day after. I know many people who go into surgery on an emergency basis or who are extremely sick and their surgery is a success. You never know, unfortunately.
But, Remicade gave me an extra year. An extra year to be a kid. I was able to change schools which my parents thankfully held off on the year before because I was on prednisone and the side effects were horrific. I was able to swim again on my high school and private team. I was able to settle into myself after having two years of non stop torture and hell.
And like my mom said, I never blamed the drug. I blamed the disease.
How do you feel about this? Do you blame drugs when they fail you or does it make you despise inflammatory bowel disease even more? When surgery is not a success, do you blame your surgeon or just think it is the luck of the draw?