Open Mouth, Insert Foot

Lately, all the people I talk to in the medical profession (mostly nurses), treat me as though I have never researched a disease I’ve had for 10 years. I don’t know what sort of idiots they’re used to dealing with, but I know a helluva lot more than they do–both from a scholarly perspective AND from a personal perspective. For example, one haughty NICU nurse said she had been diagnosed with UC a year ago. I asked what meds she took and she couldn’t even name them, but recognized them when I rattled off the different brands/types. She said “well it doesn’t matter because they’re all the same”. I didn’t bother getting into a pissing match with her, but she couldn’t be more wrong. The meds we discussed were all variations of the same ingredient (mesalamine) but they are NOT biologically equivalent–which is to say, that they are not all broken down, absorbed, and utilized the same in our bodies. Prime example: I was thrilled when I recently switched from taking 6 Delzicol capsules, to 3 Asacol HD tablets (twice daily). But the extended release meds I tried previously (Lialda) never worked as well for me, and unfortunately neither did Asacol HD, so I switched back to Delzicol this week and have seen improvement. This nurse also uses Canasa suppositories (as do I) but she crinkled her nose when I told her I’m using Remicade. Which brings me to…

ALL my doctors (particularly my GI’s) tell me to use Remicade while ttc and throughout pregnancy. ALL the boards I’ve consulted where women posted stories of their pregnancies while on Remicade and their children’s health afterwards have been nothing but positive. ALL the infusion nurses I’ve had have told me stories of Remicade patients who delivered healthy babies…

But on the flip side, all the nurses (both acquaintances and my infusion nurses) have this nervous, worried/confused look on their faces when I say that I intend to use Remicade during my pregnancy. What gives?! None of them have offered me a “cautionary tale” and in fact each of them can recall at least one Remicade patient that had a normal pregnancy.

Yes, I do read medical journals (not just google), and I’m not blindly following my doctors’ suggestions. Unfortunately (fortunately) researchers aren’t allowed to use pregnant women like lab rats, so there’s just not a lot of data available to support/refute the use of Remicade during pregnancy. So I have to base my decisions on the data I have, the severity of my disease, the experiences of other women who’ve used Remicade in pregnancy and my doctors (who are confident in prescribing Remicade to pregnant women).

So why are these nurses making me feel like I don’t know what I’m doing? Like I’m doing something wrong? I’m ok with every other ignorant “crunchy mama” telling me to quit the drugs, eat paleo and do yoga–and I appreciate everybody’s (judgement) concern, but honestly I expected nurses to be more (educated) understanding.

When I went in for my Remicade infusion today and told “Nurse Carol” that we are ttc, she said “but you’ll quit when you’re pregnant” and without hesitation I said “No”! And proceeded to fill her in on the details of my decision. I could tell she was a bit embarrassed about opening her big mouth–and she should be.

I admit that I’m pretty pushy with my friends, but even then I don’t advocate things if I can’t back my claims up with data and examples. I certainly don’t push my (medical) opinions on strangers! And knowing what a big decision Remicade is and that doctors (are supposed to) only advocate it when less invasive treatments have failed…knowing that a woman with an overactive immune system would rather risk the unknown and take Remicade, rather than lament the demise of her baby because her own (broken) body attacked her pregnancy…me personally, I would wish her well and keep my f*ing mouth shut. But that’s just me.

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5 thoughts on “Open Mouth, Insert Foot

  1. I couldn’t agree more here. It’s always confusing to me why someone thinks they are ‘helping’ when they really aren’t educated on the facts. You did the right thing by correcting her and you’re doing the right thing for your body. You do what you need to do!

  2. I hear you. I HATE when people try to give me medical advice. Unless they’re my doctor there’s very little chance they know what they’re talking about. Well-meaning or not, it drives me insane.

  3. I agree with other commenters, it’s great you are advocating for yourself. I have nominated you for the Sunshine Award. I follow your posts and am always excited to read them. Your honesty and humor while dealing with such difficult situations is amazing.

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