Tag Archives: bloggers

CCFA Ad Campaign + New (to me) Blog

What do you think of the CCFA’s current ad campaign? It centers around the bathroom as essentially a jail for people with Crohn’s & UC. I think it’s one of the few times an IBD organization has really faced the embarrassing truth around what IBD is really all about and I have to give them kudos. Especially because several friends emailed me photos of the campaign when they saw it and just felt compelled to send them to me. It’s a good sign when a campaign is shareable.

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I noticed Blood, Poop & Tears had a little something to say about it too: http://www.bloodpooptears.com/the-ccfa-ad-campaign-aint-no-party-like-a-butt-hurt-party/

Chubby Jones!

So, I’ve officially been running for two weeks. I’m not sure if I’d call it running, though. What is it called when you run slower when you walk?

Every other morning I put on my shoes and gross t-shirt and shorts, grab my iPod and try to walk briskly out the door without tripping. Then I continue the five minute warm-up, Chubby Jones in my ear, and try not to trip. Then I do the alternate run/walk as she tells me to, focusing mostly on not tripping. So far, I mostly haven’t tripped that much.

So, two things are surprising: one, that I’ve had a few runs where I’ve only tripped once, but also the feeling I have when I do it. I feel good. Really good. I thought I’d feel TERRIBLE. But I feel like I’m doing something good for myself, and since I’m focusing on not tripping I can have that time to not focus on any other issues or problems I have in my life. It’s just me time. And then afterward, even though I’m not going too fast or too long, I do believe I’m getting that fabled runner’s high.

And Chubby Jones is awesome. She’s on iTunes, and I highly recommend her podcast.

ePatient Connections Day 2

On Day 2 of ePatient Connections I just can’t help thinking about being a double agent. Because I am one. But not in the cool spy sort of way. I work in the healthcare industry, and also I’m a patient. It’s two worlds that for some unexplainable reason are very separate. I don’t want to wrong my fellow patients fighting the Crohn’s fight by making it seem like I’m working for “the other side.” And yet, I am. I work, directly and indirectly, with some of the people innovating in healthcare: pharma, nonprofits, etc. So many people hate pharma. I understand that, I do, I’m a PR person after all. But because of pharma I can live my life, because of the scientific advancements they’ve made that allow me to have a normal life. And I have loved pharma for that – and always will – no matter who is responsible for my paycheck.

I’d like to say that by day I do PR for an ad agency that specializes in healthcare, and that by night I’m a mom and a wife and a patient. But I’m not. I am all of these things all of the time. Living with an incurable disease makes me better at my job, because it helps me help my colleagues understand what I really truly go through, and what my fellow fighters and survivors go through. And working for a company that understands Crohn’s disease means that I get time off when I need it to get rest when I need it or go to a doctor’s appointment or just plain find that balance that has eluded me in every other industry.

For me, not being a double agent means … well the only way I’d be able to do that would be to stop blogging. Because (thank you, stupid Crohn’s,) I need health insurance, so I can’t exactly quit my job. But not just that – I need my entire life. I need my career, it makes me feel whole. So that won’t happen. I’ll always be a double agent. I’ll always keep working to do all of these things that help fulfill my life.

But wait. Maybe one day I won’t need to be a double agent because maybe one day my two worlds will connect. ePatient makes me feel like perhaps that could happen.

I’m a Babe

I just joined up with Chronic Babe, an inspiring blogger whose initiative focuses on women with incurable diseases. I never before thought Crohn’s could make me feel like a babe, but there you go!

 

When you sign up as a Chronic Babe – which is free – you get a copy of her eBook. It’s pretty good, it goes through steps that everyone should take to take care of themselves. I have to say, it’s the best synopsis yet of how people with medical conditions should take care of themselves and put their health first.

 

I’m at the SXSH ‘unconference’ today and got to meet Jenni briefly. I look forward to hearing more from her and Chronic Babe. It’s so early I haven’t got too much to share just yet.

Which Drugs Are Safe for Breastfeeding Moms?

I’m republishing this blog post by Lisa Emrich because I think it’s an incredibly helpful guide, and definitely relevant for Crohn’s.

Breastfeeding and RA Drugs: What is Safe to Take?

by  Lisa Emrich
Tuesday, August 02, 2011

World Breastfeeding Week is August 1-7, 2011.   Choosing to breastfeed is an important decision for every mother, especially mothers who live with rheumatoid arthritis.  The medications we take for RA are powerful drugs with serious and potential side-effects.  Every mother wants to know that the health of her child is not being affected by these medications.

Knowledge of what are safe medications to take is vital.  BabyCenter.com offers a consolidated chart of medications which are usually safe to take while breastfeeding, probably safe in usual doses, hazardous, and not safe to take.  The list was compiled by Philip Anderson, a pharmacist and editor of LactMed which is the National Library of Medicine’s drug and lactation database.

Mothers want to know how various medications or chemicals may impact their children, especially breastfeeding infants.  LactMed provides information regarding the impact of many drugs and chemicals on lactation, infants, and breastfeeding mothers.  The database also offers summaries on individual reports and studies involving infants exposed to different medications in breastmilk.

LactMed is “A peer-reviewed and fully referenced database of drugs to which breastfeeding mothers may be exposed. Among the data included are maternal and infant levels of drugs, possible effects on breastfed infants and on lactation, and alternate drugs to consider.”

Searching the LactMed database is easy and the information is presented in clear language.  All data comes from scientific literature and is fully referenced.  Statements regarding a drug’s compatibility with breastfeeding are provided by the American Academy of Pediatrics (AAP).

A new feature for the database is the LactMed App for iPhone and Android mobile devices.  The app presents the very same information which is available on the website, including hot links to supporting reference materials.  The app was very easy to use and is the source of the information shared below.  This information is not intended to be complete nor provide medical advice.  It is only a sampling of what is shared in LactMed.  Please discuss options with your rheumatologist.

Medications Used in RA and Their Effect on Breastfeeding

STEROIDS:

Prednisone – Limited information indicates maternal doses up to 20mg produce low levels in breastmilk and would not be expected to cause any adverse effects in breastfed infants;.  With high doses, the use of prednisolone (instead of prednisone) and avoiding breastfeeding for 3-4 hours after a dose should decrease the amount received by the infant.

Prednisolone – Limited information indicates that maternal doses up to 50mg produce low levels in breastmilk and would not be expected to cause any adverse effects in breastfed infants.  With high doses, avoiding breastfeeding for 4 hours after a dose should markedly decrease the dose received by the infant.

Dexamethasone– Because no information is available on use during breastfeeding, an alternate corticosteroid may be preferred especially while nursing a newborn or preterm infant.

BIOLOGIC AGENTS:

Cimzia (certolizumab pegol) – *

Enbrel (etanercept) – *

Humira (adalimumab) – *

Remicade (infliximab) – *

Simponi (golimumab) – “since no information is available… an alternate drug may be preferred.”

Actemra (tocilizumab) – not listed in LactMed

Kineret (anakinra) – not listed in LactMed

Orencia (abatacept) – not listed in LactMed

Rituxan (rituximab) – not listed in LactMed

*Preliminary data indicates this medication is minimally excreted into breastmilk, which would be expected because of its high molecular weight and size.  Since the medication is not orally absorbed, any amount found in breastmilk is unlikely to adversely affect the breastfed infant over 1 month of age.  LactMed includes information regarding the normal growth and development of infants who were breastfed while the mothers used one of these medications.  However, until more data becomes available, an alternative drug may be preferred, especially when nursing a newborn or preterm infant.
DMARDs:

Arava (leflunomide) – not listed in LactMed

Rheumatrex, Trexall (methotrexate) – Some authors state that the low, weekly doses used in RA are of low-risk to breastfed infants.  Exclusively breastfed infants should be monitored with complete blood count with differential if methotrexate is used during lactation.

Plaquenil (hydroxychloroquine) – Generally considered safe; infants receive only small amounts in breastmilk and no evidence of visual or hearing deficits were seen in one study.

Azulfidine (sulfasalazine) – Generally considered safe, but carefully observe breastfed infants for signs of diarrhea as some cases have been reported.

Cuprimine, Depen (penicillamine) – Some authors state that use of penicillamine is unacceptable during lactation, however others stress that transfer to infant through breastmilk is likely to be low.

Dynacin, Minocin (minocycline) – Short-term use is acceptable in nursing mothers; monitor infant for rash or possible effects on gastrointestinal flora.

Ridaura (auranofin, oral gold) – Recommendations are mixed; monitoring for possible adverse effects in the breastfed infant would seem prudent.

Myochrysine (gold sodium thiomalate, injectable gold) – Recommendations are mixed; monitoring for possible adverse effects in the breastfed infant would seem prudent.

IMMUNOSUPPRESSANTS:

Cytoxan (cyclophosphamide) – Sources consider breastfeeding to be contraindicated.

Imuran, Azasan (azathioprine) – Exclusively breastfed infants should be monitored with complete blood count with differential and liver function tests if azathioprine is used during lactation.  Avoiding breastfeeding for 4-6 hours after a dose should markedly decrease the amount received by the infant in breastmilk.

Neoral, Sandimmune, Gengraf (cyclosporine) – Cyclosporine concentration in milk is variable, probably more concentrated in the milk fat in hindmilk.  Most infants studied have not had detectable cyclosporine blood levels.

NSAIDs:

Motrin, Advil (ibuprofen) – Ibuprofen is a good choice as an anti-inflammatory agent in nursing mothers.

Tylenol, Favarall, Tempra (acetaminophen) – Acetaminophen is a good choice for analgesia and fever reduction in nursing mothers.

Aleve (naproxen sodium) – Limited information available; however because of naproxen’s long half-life and reported serious adverse reaction in a breastfed newborn, the mother may prefer to use other agents.

Actron, Orudis KT (ketoprofen) – No published literature available; but with low levels found in breastmilk and a short half-life, ketaprofen is unlikely to adversely affect the breastfed infant. 

Celebrex (celecoxib) – Because of low levels in breastmilk, amounts ingested by the infant are small and would not be expected to cause any adverse effects.

OxyContin, Roxicodone (oxycodone) – Maternal use of maximum dosages of oral narcotics while breastfeeding can cause infant drowsiness; monitor for drowsiness, adequate weight gain, and development milestones.  If the baby shows signs of increased sleepiness (more than usual), difficulty breastfeeding, breathing difficulties, or limpness, contact a physician immediately.

Ultram (tramadol) – Tramadol produces low levels in milk and is unlikely to adversely affect healthy, full-term infants and acceptable to use during breastfeeding.

Voltaren(diclofenac sodium) – Available data is limited, however most reviewers consider diclofenac to be acceptable during breastfeeding.

The National Library of Medicine also offers DailyMed, a website which provides healthcare providers and consumers comprehensive information regarding FDA-approved drugs.  You can read up-to-date label information for any of the drugs you may be taking. 

Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Vacation Highlights

We took a 10 day vacation to the middle of America, and in the back of my head the whole time was flodder.

Which is nice. Because even when the worst things happen, I can say, well at least it will make a good story for my blog.

Like the flight being delayed. So that a one hour trip turned into 14. Like having a headache for 3 days afterward that got so bad I went to an urgent care center, and they told me I was having a migraine and gave me a shot of painkillers. In my tush. And like me hearing the nurse afterward telling another nurse that she forgot her glasses today, so could she please make sure she just gave me the correct shot? Mmm hmm, flodder.

We did have a great trip, though, if for no other reason because we got to be with family. It pains me how little time I get to see even my husband and daughter, so to get to spend a lot of time with them was bliss.

I’ve decided to take up golf, so while there I bought a golf glove and took a lesson. I immediately learned that I am horrible at golf, and I think I’m going to love it. It’s been a while that I took on a challenge that’s just for me. And a very long while since I took up a challenge that involved exercise. We do not speak of the karate lessons of 2003 or the dance lessons of 2004 or the karate lessons of 2006.

Anyway, one more highlight of our trip happened on the way home – we were returning the rental car and walking through the parking garage to the airport, and I was holding the munchkin in my arms. She was still very sleepy – it was 4:30 in the morning.

“Who that man?” she asked me, her tiny voice growing large as it reverberated around the parking garage. I could hear the steps of a man behind me, so I told her, “He’s going to the airport too, to catch a plane, just like us.”

She responded “Where his hair go?”

Oh. God. Sure enough, a moment later the man passed us in a huff, receeding hairline and all.

That’s a milestone to be sure – first time the munchkin embarrasses us by insulting a stranger.

Here’s a little family photo from our trip, taken from the Chicago bean seen above.