Just had to share...

I'm going in for a cystoscopy for microhematuria on the 23rd.  So the registration pre-op nurse calls me yesterday and goes over my health history.  She already had the list of medication I was on so she was confirming and when she got to Colazal she mispronounced it, this was my first clue she didn't know what it was.  So at the end of the health interview, she was telling me what meds not to take until the scope is over and she mentioned that I may have to stop Colazal.  I told her that I do NOT think so or I may end up in the hospital for other reasons.  She seemed sort of insistant until I told her that Colazal is an anti-inflammatory of the colon and it's not systemic and that I have had taken it in the past during other minor outpatient surgeries.  So she let it go.  What sort of burns me though is that if I had not been a veteran Uc'er that knew her stuff, I would of stupidly agreed and paid the price for it later.  Really, I mean these nurses should KNOW this stuff right?? 

So this is sort of a warning to others that may have to ever go in for outpatient surgery.  Never ever stop your Uc medications on the advice of a nurse but rather always ask your GI for confirmation.

Sherry, I'm so used to healthcare professionals not knowing what Colazal is, I expect it. In fact, I was surprised when my new PCP did know. The thing is, there are thousands of different medications in use. For example, there are at least 20 antibiotics that have been developed since I worked regularly with infectious disease years ago.

Providers remember those they work with or encounter regularly. Since IBD isn't that common relatively, and even among us Colazal is less-used than Asacol, they just don't run into it that often.

I have a standard spiel I give to people who clearly know nothing about UC, explaining what I can and can't do, take, etc.

Part of our mission in life, I guess, is educating the world.

I just went to my health clinic yesterday to read blood test results and I do love those guys over there because they are as compassionate as they can be with all of my UC drama, but I have been the one to educate them on everything from drugs to testing to symptoms. I pretty much dictate what I need done when I see them and what I need prescribed. My GI's office is the same. I don't give the nurses much credit and I always make sure that the doc is who I'm listening to. Even then, I always question his motives because he doesn't have the UC, I do, it's my body...

This disease pushes me to be pro-active and stay on top of what the "experts" want to do with my body. I often wonder about the masses of people who just put their fate in the hands of one person and wonder how they cope. Because they really don't know. I'm lucky I have the time to dedicate to this, to figure it out, because it is very complicated with the high risk meds, the gnarly symptoms, and the fact that it's a hit and miss for what works and what doesn't. Also, it revolves around food and drink which is so part of being human. I've learned so much and there's so much more to know. SOO yeah, I like to know the how and why of what people tell me...

Burli said...
I had an at-home infusion of Remicade performed by a nurse who was in a hurry. I over heard her phone conversation telling someone she was almost done and would get there as soon as she could. She went too fast with the flow and I had a bad allergic reaction.

Yikes! That's outragious.

You have to be informed and assertive when dealing with health care!

LOL Yes it will be Q since she is also looking into my kidneys too :P I'm being sedated for it btw. But thanks for the well wishes - I'm more nervous about the scope then if she finds anything or not for some reason. I should be used to being poked and prodded by now but so far that is the ONE area that hasn't been "touched"! :)

I understand that docs and nurses can't possibly know every single med out there. But to tell someone to stop a medication that they don't understand what it is for is what got me. But yes, this proves that we must always be our own advocate.