Learning to Speak "Medical Talk" With Crohn's
Yes, I once spent over 367 days in the hospital due to complications with Crohn's. Many days I was too sedated to talk or think straight. But there were also many days that I was awake, alert, and learning.
The silver lining of almost losing my life to Crohn's was that I became very medically literate.
Often in medical settings with Crohn's
I remember being in Temple University Hospital in Philadelphia, which known for its teaching, the nursing students and medical students would rotate to different departments every 2 weeks. When they would start their rounds at 4:30 in the morning, I would share with them the knowledge I had learned from the last group of students on the last rotation.
I remember vividly lying in bed as a nursing student was putting on the telemetry stickers to monitor my heart rate. I was telling her which color string goes where on my stomach/chest. I remember she was impressed.
Learning the lingo and medical terms
I learned a lot of "doctor talk," which has helped me now during outpatient. For example, when going to new doctors, or even my routine primary doctor, I am able to rattle off my medications, dosage, and frequency very quickly. I use terms such as "BID" or "TID" (twice a day or 3 times a day).
So why does this matter? To brag? No! My wife would disagree with that exact statement but... The reason why it matters is I strongly believe that you get a lot more respect from drug companies, doctors, and medical advocates when speaking their language.
I started to better understand my Crohn's
Now, that is not to say that you don't get the same treatment. But I really do believe that I have made more medical advances with my own condition because I had an understanding of what was going on with my body and my disease.
I really got a handle on the correct numbers when it came to my blood work. Now the numbers for my blood work are a double-edged sword. My colorectal surgeon once said, "Don't go by the numbers, go by how the patient is feeling." That statement is easier said than done.
Knowing what my blood work levels meant
For example, for the longest time my white blood cell count was elevated. This would suggest that there was an infection brewing, especially in the PICC line that allowed total parenteral nutrition (TPN) to nourish my body. I felt fine, and that was what mattered in his eyes.
The same thing went for my chronic anemia that made my hemoglobin drop. Again, I was not actively bleeding and I felt great. He urged me to relax and not worry. "Listen to your body," was his school of thought.
Just part of my medical vocabulary
My wife often gets on my case. She says to me, "Everyone else says 'I need to go to the bathroom.' You say, 'I have urgency.'"
I guess she is right, but I cannot forget that feeling from the hospital – the awful urgency I would get in my rectum due to pouchitis. But I guess I can relax on medical terms at home... For her sake!
How open are you about being diagnosed with IBD?