Sweating the Small Stuff

First, a disclaimer up front for this entry: I am in no way, shape, or form, a trained medical professional. You should ALWAYS listen to your doctor(s). My goal with this entry is to stress the importance of doing research (like, REAL research, none of that "I watched a 5 minute YouTube video" form of 'research'), so you can have informed conversations with your doctor(s), and the confidence to raise a red flag if you have concerns.

Now, what is Patient Advocacy, and why is it so important?

Prior to working in the pharmaceutical industry, I'd never heard the term 'patient advocacy'. The concept though, is one that everyone should be familiar with, so they can advocate both for themselves and for their loved ones when it comes to health and wellness. Its not a difficult concept... you probably already do it to some degree. 

• At the highest level, it can be as big as being part of an organization that supports research and raises funds/awareness for a particular disease, such as ZERO: The End of Prostate Cancer, or The Crohns & Colitis Foundation. 
• It could mean being a vocal leader in the community of a disease, such as Maggie Kudirka, AKA the Bald Ballerina (seriously, if you haven't read about Maggie's journey with metastatic breast cancer, you should - she's such an inspiration). 
• But at a more personal level, all it really comes down to is researching and familiarizing yourself with your health, your illness, your prescriptions, and your options, so that you can really work with your doctors to make the best choices for you. 

This last one can be especially important if you have multiple doctors who don't necessarily connect with each other, or may not be familiar with illnesses outside of their specialty... which is what I encountered.

Since moving to New Jersey, there are two doctors back in Connecticut who I absolutely refuse to replace, and will just schedule appointments with them during a time when I'm back in CT anyways: my GI, Dr. Johnson (who I've mentioned multiple times in the blog), and my dermatologist, Dr. E. I've been seeing Dr. E for years, as I have the... mmm... 'good fortune' of having a number of moles littered around my body, specifically on my back. I joke that its the one feature I inherited from my mom (Thanks mom). So, since the appearance of moles can be one of the first indications of skin cancer, I've had a yearly appointment where Dr. E gives me a once-over, checking the ABCDE's of melanoma.

Funnily enough, many of my moles exhibit some of the characteristics in this chart... but that's actually what reassures Dr. E... he says that my moles are 'consistent in their inconsistency'. Kinda like me in general. :)

Thankfully, in the many years I've been seeing Dr. E, there has only been one instance where he was concerned. He removed the mole right then and there, and sent it out to be biopsied. It came back benign, and he hasn't found anything since. When a doctor has YEARS of  experience and notes and even pictures for comparison on you (seriously, he takes new pictures every couple years to see what's changed/new), its hard to justify moving to a new physician.

So what does all that have to do with me being my own advocate? Well, I had my yearly exam with Dr. E over the holidays, and he asked if I have any other concerns. I finally brought up something that had been bothering me for years (not to mention ruining some good shirts)... despite using clinical strength antiperspirant, I'd been experiencing excessive underarm sweat. (Hey, you're in a blog about Crohn's, where I've talked about blood, pooping, and blood in poop... a little talk about sweat shouldn't be THAT big of a deal, right?) The pit stains could get really embarrassing, especially now that I'm back out in the dating world. 

Now, Dr. E is a great doctor, but not one for 'extra' words... he gets right to the point/solution. He gave me a prescription for a product called Qbrexza, asked if I had any other concerns, and sent me on my way. It wasn't until I was in my car that I realized that I only knew two things about what I had just been prescribed: 1) it was a towelette I wipe my armpits with once a day, and 2) I needed to immediately wash my hands after application because it could blur my vision if I touched my eyes with the medication still on my hand. It seemed simple and harmless enough... but if it required a prescription, I wanted to know how it worked and what side effects were possible. 

A product's prescribing information (PI) is where you will find everything you need to know about a medical product. Your doctor should have a copy of the PI for every product they prescribe, but if that seems a bit overwhelming (some products can have MASSIVE PIs... Humira's PI, for instance, is over 100 pages long because of the number of indications it has), you can ask for the Patient Information, which gives a great summary and is usually a bit more 'digestible', in terms of the language it uses. So I went online, pulled up the Qbrexza PI, and started reading. A red flag immediately went up with I reached Section 4: Contraindications.

So what's my problem here? I have Crohn's Disease, not ulcerative colitis, right? Well, yes. However, as I mentioned earlier, part of being your own patient advocate isn't just knowing about the products you're on, but about the disease/illness itself. Crohn's and colitis both fall under the umbrella of Irritable Bowel Disease, meaning that, while they each have unique attributes, they are essentially in the same 'family' of conditions. Knowing this, I sent an email to Dr. Johnson, explaining the situation and asking for her thoughts on what I should do. She got back to me quickly, confirming my concern: as an anticholinergic, Qbrexza can slow the digestive system down, causing constipation/obstructive symptoms. And since my last visit to the hospital was due to an obstruction in my intestines caused by my Crohn's, I had no interest in using a product that could recreate that.

The whole situation had me thinking about what could have happened if I hadn't been my own health advocate. What if I hadn't read the PI of the product that Dr. E prescribed me? (I should note that I don't think any less of Dr. E in this situation... while I'm sure my chart in his practice notes that I have Crohn's, I highly doubt that as a dermatologist he knows every condition that is related to UC and the other examples listed in the Qbrexza PI.) What if I had just thought "well, he prescribed it, so I should just take it"? (Additional disclaimer here: sweaty armpits are obviously not a life or death situation. In most situations I would definitely encourage you to take the medication(s) your physician has prescribed, and if you have concerns, continue taking it as prescribed until your doctor says otherwise.) What if I hadn't known how similar Crohn's and UC can be? What if I hadn't reached out to Dr. Johnson for her opinion, figuring that she'd be too busy to answer anyways?

This is your health. Do not be shy about doing some research, bringing up issues, raising a red flag, or asking questions. Doctors have heard just about everything - its really hard to shock them. The more you and your doctors work as a team, the better. So be a bit of a bother if you need to, and don't apologize for it. If you do, I'd bet that most doctors would thank you for speaking up, and then tell you..."Don't sweat it."

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