What Happens When Doctors Minimize: Part 1

When someone is initially diagnosed with a chronic condition like ulcerative colitis or Crohn’s disease, that person and their family understandably don’t want or need to hear all of the worst-case scenarios. Being told you have an incurable, chronic illness is life-shattering enough but then to hear story after story about all of the awful things that could happen is not helpful for the patient or their loved ones.

Just like a newly diagnosed patient doesn’t need to be bogged down by “what if’s,” a person who needs to undergo surgery for their inflammatory bowel disease (IBD) also doesn’t need to hear all of the possible complications.

Or, do they?

I thought I'd go back to normal after surgery

I have gone back and forth about this topic for a little while. When I needed to have my first surgery for ulcerative colitis, I was told that I would never realize my colon was gone. My parents and I were literally promised that they would remove my entire large intestine and make a pouch in the shape of a J out of my small intestine. It was firmly implanted in our brains that I would go back to the exact person I was prior to my IBD diagnosis. Sure, there might be some aches and pains during recovery but after that, I was told, I wouldn’t even know anything had been done.

Post-surgery complications

Two days after my surgery, I developed a massive wound infection that caused me to spike 105-106 degree fevers. Things were so dire, a doctor had to re-open my incision at my bedside with no pain medication or anesthesia. However, after that, my fevers started improving which allowed me to be discharged. Without going into intense detail, my mentality shifted a bit after this complication. As a side note, my parents and I were never told complications could even occur let alone something as huge as the one I experienced at that time.

I now felt like “okay, I guess complications can happen but it is good that mine was figured out and sure it’ll take me longer to heal, but that’s okay because afterward, I am going to be back to the care-free teenage girl I used to be. I could wait a couple of months, right?”

I still never felt well in the weeks after surgery

As the days, weeks and months went on, I still never felt well. I had no appetite and would get full from eating a single bite of something. My parents, not knowing any better, would get so mad at me for not being able to eat 'normally' and they had no idea why I wasn’t thriving. I continued to tell my parents that something was wrong but all I got in response was my GI telling my parents and me that I had developed an eating disorder. I remember my GI yelling at my parents for letting me get so thin and handing them a pamphlet of places to send me for eating disorder recovery treatment.

Fast forward a month later and I had begged my parents to call my surgeon, NOT my GI. He said there was no harm in doing a CT scan just to be sure everything was going as expected.

Tests, infection, and a reason for why I felt so poorly

After only being able to drink half of the barium, I was taken back to the imaging room, and then brought out to the waiting area and was told to stay put. I vividly remember a random doctor calling my parents over and having them speak to someone on the phone. About twenty minutes later, my parents, surgeon, nurse practitioner, and another doctor I didn’t know told me I was being admitted and that my body was filled with infection. I was told that if I waited another month, there would have been no hope for me.

While I was glad there was a clear reason for the way I was feeling, I still didn’t understand what was going on. I was told I had abscesses, my J-pouch was riddled with fistulas, and infection spread throughout my entire body. When I asked if this could be the reason why I would get full so easily, they all looked at each other, put their heads down and went “absolutely. This is absolutely the reason.”

I once again had a shift in mindset but the reality was starting to become a little clearer. This wasn’t the simple surgery that doctors made it out to be.

In an effort not to make this article too lengthy, I decided to break it up into two parts. Be sure to check out Part 2 where I share just how much doctors and surgeons minimizing diagnosis and recovery periods can impact a person and their loved ones.