Post #62: Paging a doctor with an AAC....

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

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When I do research, I like to unbutton my sweater too. Data gets me all hot and bothered.

Today's super fun prompt: "I don't know about this, but I'd like to."

 

Hmmm. There is a lot I'd like to know about Crohn's, and a lot I don't understand. I try to keep myself updated on the latest published research, and I tend to spend a lot of time trolling various message boards to learn how other people are dealing with the symptoms/side effects I'm experiencing. But however much time I devote to these pursuits, I don't have a medical degree; I'm not a doctor, and I can only filter the information I find through a patient's mind.

 

What I would like to know is how a doctor with Crohn's deals with his/her disease.

 

If I had a fuller understanding of the human body and how it works, and a medically grounded viewpoint from which to view this disease, I wonder if I would be more or less likely to approach new and novel (and potentially fatal) treatments with apprehension. I know many doctors choose a field of study based on family history and experience; my own doctor has family members with IBD, and I like to think it gives him insight into the emotional and psychic toll this disease can take on a person. As far as I know, however, he doesn't have the disease himself. This is a crucial distinction. It's one thing to appreciate the effects of this disease, but another to experience them yourself.

 

I wonder how a doctor with Crohn's deals with the pain, fatigue, unpredictability, and uncertainty. I feel like doctors in general must view disease differently than the rest of us, as they see it so intimately on a day to day basis. Are the Crohn's doctors more proactive about their treatment? Are they doing things that would benefit the rest of us? Do they weigh the various studies and statistics differently because of professional insight?

 

Whenever my doctor talks to me about the risks/benefits associated with a particular course of treatment, it seems I'm usually focused on the risks and my doctor the benefits. Last year I went to a Crohn's symposium where a doctor graphically illustrated the cancer risk associated with a class of drugs. Thousands of little gray people (healthy) and a few red ones (cancer)-an acceptable trade off for the potential benefits. I was offended by this presentation, and it took me a while to figure out why: I felt like he was being cavalier about the little red people. The graphic was intended as a visual means of representing the "minuscule" risk associated with the drug, and the overall message was: calm down! Don't focus on the red people! It probably won't be you!

 

When I had time to think about it, I realized that the doctor wasn't looking at the chart from the mindset of a potential red person; he was all grey, all the way. It wasn't a risk for him. If the risk is not real, not personal, how can he allay my fears? It sure as hell is real to me.

 

My own doctor once said, after a lengthy conversation about the statistics, "You know, we want our patients to be healthy. If your Crohn's is better, but you develop cancer, that's not a win for us. We try to calculate the risks  of treatment and make the safest possible choices." I understand there are risks involved from every angle: taking a drug, not taking any drugs, having surgery, driving the car to the doctor's appointment.....I just wonder what choices a doctor with Crohn's makes, with the personal fear and the professional knowledge.