Salix Pharmaceuticals provided me with a stipend and paid for my travel and accommodations related to the event. However, all opinions are my own.
Most people I meet hate talking about poop, but I don’t mind. Poop is one aspect of life we all have to deal with, and I’ve recently learned it is an important topic for those of us with chronic pain. So, I’ve never shied away from talking about it or any of the other “icky” topics.
When Salix Pharmaceuticals asked me to participate in a blogger event, I was wary at first—I so rarely do projects with pharma—but when they explained that it was a unique art event designed around learning about “Painstipation” (the constipation caused by opioid pain medication in chronic pain patients), and that they were presenting findings from a survey on opioid induced constipation (OIC) sponsored by Salix in partnership with U.S. Pain Foundation, I just had to say yes. I mean, art and poop talk – this was going to be interesting.
I knew a good bit about OIC before the event, because I have chronic pain and have taken opioids in the past—and because I’ve heard about OIC as a volunteer and creative partner with U.S. Pain Foundation since 2010. So many people in the chronic pain community rely on opioids to help manage their pain. This means many of them also have to deal with OIC.
A bunch of feisty bloggers
Salix invited me and three other bloggers out to California to attend an educational, creative event about “Painstipation.”
Leslie Vandever is a blogger I’ve known for ages; she has rheumatoid arthritis, and she writes at Rheumablog, among other venues. She has openly shared that she relies on opioids to manage her chronic pain so she can continue to work and advocate for the chronic pain community. Brittney Wilson, BSN, RN, also joined us; she’s been blogging for years as The Nerdy Nurse, and has a reputation as a popular health care blogger. Charis Hill was the other blogger with us, and although I had not seen her blog at Being Charis, we clicked right away—she’s a firecracker. (In her blog, you’ll learn that she lives with ankylosing spondylitis.)
For a moment, I wondered if Salix understood that they had a room full of feisty advocates on their hands? None of us are quiet bloggers—we’re all fighting the good fight for better health care for all. Once I recognized the potential for all of us to get creative together using art, I really appreciated the thought that had gone into the event.
The research: opioid-induced constipation and chronic pain
Before we made art, we talked about the survey. Salix, in partnership with U.S. Pain Foundation, sponsored a national, one-week online survey (conducted by Wakefield Research) which evaluated 441 U.S. adults ages 18 years or older, who were living with chronic pain, on opioid therapy, and experiencing OIC. I found the results of the survey upsetting:
- 37% of these patients reported changing the dosage of their opioid medication to try to alleviate the pain or discomfort of their OIC
- 77% of these patients reported suffering from OIC for at least one year
- These patients reported waiting an average of 18 hours to have a bowel movement after taking their constipation medication
- 43% of these patients reported suffering from OIC for more than 3 years
- 53% of these patients said they would have preferred for their OIC medication to induce a bowel movement in less than 4 hours
- 47% of these patients reported taking between 6 to 10 total prescription medications on a regular basis
- 20% of these patients reported taking more than 10 prescription medications on a regular basis
I’ve been really lucky in that I’ve only experienced OIC for brief periods; it’s hard to imagine living with it for a year or longer. Or waiting for OIC meds to kick in. Sigh…
Again, I know some of us get uncomfortable talking about poop stuff…but that’s precisely why I thought this event was important, because we should get over our squeamishness so we can talk openly about OIC, an issue that impacts so many people.
Where does the term “painstipation” come from?
Dr. Joseph Pergolizzi, Jr., senior partner and director of research for Naples Anesthesia and Pain Associates, likes to use the term. We met him and discussed the issue of Painstipation and he is really passionate about helping chronic pain patients and other folks get the care they need and deserve. (I’ve followed his work for a while, and he’s done a lot of good work for the chronic pain community.) Here’s how he describes the origin of Painstipation:
“Patients may not mention opioid-induced constipation with their practitioner, so we need to have a ‘do ask, do tell’ policy. It’s important to realize that it starts with conversation. I like to use the phrase ‘Painstipation.’ These are chronic pain patients who are experiencing constipation due to their opioids.”
I think life would be so much easier if we could talk openly and freely about poop! Especially if it helps people get better care.
We made art!
Leslie, Brittney, Charis and I were all moved by the survey findings, and had a rousing conversation about how we could spread the word—and how health care partners may be able to step up and help as well. We chatted as an artist and his assistant began setting up easels, palettes of paint, and aprons. We all considered the findings shared above and thought about which ones resonated the most for us.
It was hard to pick just one, but I zoned in on the last of the bullet points above: 20% of the surveyed patients reported taking more than 10 prescription medications on a regular basis. Wow, that hits home; I currently take that many, plus a fistful of supplements and vitamins every day. It’s expensive, difficult to manage, and cumbersome.
This professional artist and instructor worked with us to help us bring the survey findings to life using abstract art. We each chose a finding that resonated with us and worked on them for a couple hours. I called my piece “punchy,” and you can see it to the left.
It was super fun to learn more about value and contrast in art, and about the possibilities that come forward when you weave different textures through a piece. I kept thinking about how I could integrate some of the strategies into my quilting—more colors, more textures, the clashing of angles and curves.
I felt like “punchy” really brought to life the finding as it had played out in my life. Sometimes, the process of managing all those prescriptions (and the bureaucracy surrounding procuring them) makes me feel wobbly and crabby. And sometimes, the fact that I have to take so many meds just to stay copacetic makes me feel, well, like I want to punch someone. So: “Punchy.”
If only more people felt like they could speak up
The thing is, so often, people with Painstipation can get help, but they may not feel comfortable talking about the issue. I hope that by seeing ME talk about it some, more people reading this will feel like it’s okay to talk to their docs.
As you might have guessed by now, Salix makes a medication for OIC: RELISTOR® (methylnaltrexone bromide). Now, I can’t vouch for Relistor personally—and you should always talk to your healthcare provider about options—but I think it’s pretty great to know there are ways to help manage your Painstipation.
So I hope you’ll speak up more, babes, if this is an issue you live with. Like I said, I don’t often partner with pharma companies on things like this…but it’s an issue I think is really important,—it’s time we become more feisty and outspoken for ourselves, and look for solutions in managing OIC.
More information about Relistor
Because Salix sponsored my participation in this art event, I need to share some more info on Relistor. Here ya go:
- RELISTOR® (methylnaltrexone bromide) is a prescription medicine used to treat constipation in adults that is caused by prescription pain medicines called opioids.
- RELISTOR tablets and RELISTOR injection are used to treat constipation caused by opioids in adults with long-lasting (chronic) pain that is not caused by active cancer.
- RELISTOR injection is also used to treat constipation caused by opioids in adults with advanced illness or pain caused by active cancer and who need increases in their opioid dose for pain management.
IMPORTANT SAFETY INFORMATION
- Do not take RELISTOR if you have a bowel blockage (called an intestinal obstruction) or have a history of bowel blockage.
- RELISTOR can cause serious side effects such as a tear in your stomach or intestinal wall (perforation). Stomach pain that is severe can be a sign of a serious medical condition. If you get stomach pain that is severe, does not go away, or gets worse, stop taking RELISTOR and get emergency medical help right away.
- Stop using RELISTOR and call your healthcare provider if you get diarrhea that is severe or that does not go away during treatment with RELISTOR.
- You may have symptoms of opioid withdrawal during treatment with RELISTOR including sweating, chills, diarrhea, stomach pain, anxiety, and yawning. Tell your healthcare provider if you have any of these symptoms.
- Tell your healthcare provider if you have kidney or liver problems.
- Tell your healthcare provider if you have any stomach or bowel (intestines) problems, including stomach ulcer, Crohn’s disease, diverticulitis, cancer of the stomach or bowel, or Ogilvie’s syndrome.
- Tell your healthcare provider if you are pregnant or plan to become pregnant. Taking RELISTOR during pregnancy may cause opioid withdrawal symptoms in your unborn baby. Tell your healthcare provider right away if you become pregnant during treatment with RELISTOR.
- Taking RELISTOR while you are breastfeeding may cause opioid withdrawal in your baby. You should not breastfeed during treatment with RELISTOR. You and your healthcare provider should decide if you will take RELISTOR or breastfeed. You should not do both.
- Also, tell your healthcare provider about all of the medicines you take, including prescription and over the-counter medicines, vitamins, and herbal supplements.
- In a clinical study, the most common side effects of RELISTOR tablets in people with long-lasting (chronic) pain that is not caused by cancer include: stomach-area (abdomen) pain, diarrhea, headache, swelling or a feeling of fullness or pressure in your abdomen, sweating, anxiety, muscle spasms, runny nose, and chills.
- In a clinical study, the most common side effects of RELISTOR injection in people with long-lasting (chronic) pain that is not caused by cancer include: stomach-area (abdomen) pain, nausea, diarrhea, sweating, hot flush, tremor, and chills.
- In clinical studies, the most common side effects of RELISTOR injection in people receiving treatment for their advanced illness include: stomach-area (abdomen) pain, gas, nausea, dizziness, and diarrhea.
You are encouraged to report side effects of prescription drugs to FDA. Visit www.fda.gov/MedWatch/ or call 1-800-FDA-1088.
Please click here for full Prescribing Information for RELISTOR tablets and RELISTOR injection.
For product information, adverse event reports, and product complaint reports, please contact:
Salix Product Information Call Center