Saturday, April 26, 2014

I Don't Always Take My Doctor's Orders And I'm Not Sorry

Disclaimer: I am not a doctor, so this post is in no way a medical opinion or advice to others about what choice to make regarding Crohn's treatment. These are merely my own reflections on the frustrating experiences I have had with doctors, the treatments they prescribe for Crohn's Disease, and my family's reactions to my medical decisions.

Sometimes my interactions with family members leave me wondering if they know me at all. Lately, one of the biggest disagreements we have is how to deal with my Crohn's symptoms. They think I should follow my doctor's advice to the letter. I think the advice of doctors should be taken with a grain of salt. They think some of my decisions regarding my medical care are stupid. I know that I always have a logical reason for my choices, medical and otherwise, and that the decisions I have made regarding my treatment reflect my lifestyle and goals. Let me explain.

There is no cure for Crohn's Disease. There is no treatment in the world that will heal me. The only thing doctors can do for me is manage my symptoms, but between 50-80% of Crohn's patients need to have surgery in their lifetimes no matter what doctors do. As a result, I want my treatment plan to accomplish two things: 1) limit my Crohn's symptoms enough that I can live my life in spite of them and 2) not induce side effects so severe that I still can't live my life even though my Crohn's symptoms are technically under control. A treatment plan is worthless to me if it fixes my Crohn's symptoms by causing other, equally disruptive medical problems.

Many of the medications that treat Crohn's Disease have nasty side effects. I currently take medications that can cause things like nausea, immune suppression that leaves me vulnerable to infections, ulcers, headache, sleep problems, and weight gain. When my doctor prescribes a new medication, I take it as prescribed--unless or until the side effects become more troublesome than my Crohn's symptoms.

This is a delicate balancing act that is akin to a high stakes game of would you rather, and I am not the first Crohn's patient to have played. For me, the questions go something like this: Would you rather live with occasional mild stomach pain that does not keep you from running, cycling and hiking or treat the stomach aches with a medication that causes nausea that will keep you from participating in the only activities that make your life enjoyable for at least one day per week? Would you rather eliminate a few fruits and vegetables from your diet to avoid occasional stomach distress or take an immune suppressant that might help with the stomach aches but will also leave you particularly susceptible to every cold, flu, stomach virus, and other communicable illness you are exposed to at school, work, or the gym? Would you rather have a swollen lip that looks horrible but doesn't cause physical pain or have steroids injected directly into your lip to take down the swelling? I wish these were hypothetical questions, but I am forced to answer them every time I take the methotrexate, Humira, Prednisone, or other drug my doctor prescribes.

If I understand correctly, some of my relatives think that if I don't take every single pill, shot, and infusion, it is akin to choosing illness over health. As an aside, I actually listen to their arguments even though they rarely bother to give credence to mine. Just to give you an example, an aunt once informed me that she could have me declared incompetent so she could become my guardian and force me to undergo some treatment I decided wasn't right for me. I didn't bother arguing with her even though she's a little confused about how the legal side of that process works, but that is a tangent I won't pursue any further. I'll get back to the point.

As the person who has to live with my symptoms and side effects, I am intimately aware of how some Crohn's treatments can damage my quality of life far more than do my Crohn's symptoms.  I know that there is no such thing as true health for someone like me--there is only a choice between a set of symptoms or a set of side effects, and I believe that if the side effects disrupt my life more than the symptoms, the most rational choice is to accept the symptoms. After all, I can ignore mild stomach pain because I've been doing that for well over a decade. The nausea from the medication that might treats the stomach pain, on the other hand, means missing out on things I would otherwise do. I have had to give up a lot of my dreams to survive my illness, but there are some things that are too important to sacrifice. I always choose the treatment (or lack thereof) that will best allow me to pursue the life I want to live. I will not apologize to anyone for my decision.

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