Painstipation, Ever Heard of It?

Salix Pharmaceuticals provided me with a stipend and paid for my travel and accommodations related to the event. However, all opinions are my own.

Poop. Number two. Bowel movement. Stool.

If it isn’t hard enough already to talk about living with my invisible, incurable disease and chronic pain, it’s even more difficult to talk about poop — or lack thereof: constipation caused by opioids, a medication I take to manage my chronic pain.

You’re laughing, right? Because I said poop. And I’m sorry not sorry for all the puns in this post.

When I was invited to attend a recent event to discuss Opioid Induced Constipation (OIC), my first reaction was, “Wait, what? Opioids can cause constipation?” I was shocked. I consider myself a well-informed patient and if even I didn’t know, I realized a majority of my audience probably doesn’t know either.

At this Salix Pharmaceuticals event, I learned of the word Painstipation, which is known as the constipation caused by opioid pain medication in chronic pain patients, also known as OIC. Dr. Joseph Pergolizzi, Senior Partner and Director of Research of Naples Anesthesia and Pain Associates who spoke at the Salix event says, “Some chronic pain 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.”

Before hearing the term, I hadn’t even known OIC was a common side effect of taking opioids.

I’ve been taking a well-managed low-dose opioid pain medication for a few years – suddenly I began thinking about my own poop. Did I ever experience constipation because of my opioid pain meds?

Well, as a matter of fact, a lot of times it just feels like I can’t quite, you know, get it all out. And I’m not making that up; you all know how detailed I get with my blog posts. I have absolutely no problem welcoming you to the reality of my intestines, because you know what? It’s a medical issue that we need to be more comfortable talking about.

Before you think I’m writing a satirical post, let me share some findings from a national, 1-week online survey sponsored by Salix Pharmaceuticals, in partnership with the US Pain Foundation and conducted by Wakefield research. The survey evaluated 441 US adults aged 18 years or older who were living with chronic pain, on opioid therapy and suffering from OIC or “Painstipation.”

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 reported 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

Now that we’ve gotten that out of the way, let me express my frustration that there is a lack of communication around this issue. Is there a stigma in talking about poop amongst the chronic pain community? I mean, yes, it’s a pretty crappy subject, but imagine the benefits we may realize if it was out in the open.

My guess is that some of the reasons for this gap in patient-health care provider communication are:

We sometimes:

A) Don’t realize our opioid medications are the reason for our constipation

B) Are too embarrassed to bring it up

C) Are afraid that if we say we’re having these side effects our doctor may stop prescribing our opioid pain medication

D) May only have 15 minutes or so with our doctors and our bathroom habits aren’t always the top priority

The reality is that opioid pain medication relieves intractable pain for millions of people, and I believe opioids should continue to be available as an effective, well-controlled option for those who need it. But these opioid medications can cause OIC. And in addition to just talking about it, we need to be aware that there are ways to help alleviate OIC.

And, well, since this is a sponsored post for Salix, here’s the appropriate place for me to mention their product that may provide relief from the symptoms of OIC for appropriate patients: RELISTOR® (methylnaltrexone bromide).

INDICATIONS

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.

Please see additional Important Safety Information below and click here for full Prescribing Information for RELISTOR tablets and RELISTOR injection

As a patient, let me make it clear that not every medication has the same effect on everyone. Also, I’m not a doctor, so I encourage you to talk to your doctor and allow her or him to help you decide what’s the safest, best approach for your body. And I really mean that.

So here are some ways I would approach my physician based on what I know now:

“Hey doc? I’m only able to go number two every few days and I have a lot of pain in my gut. I think it’s the pain medication.”

“Doctor, my bowel movements are not regular anymore and I need help, but I don’t wanna stop taking the pain meds. I can’t function without them.”

With that conversation out of the way, I have to say how awesome it was meeting three other amazing advocates and bloggers in the chronic pain and medical community at the Salix event: Jenni from ChronicBabe, Leslie from Rheumablog, and Brittney from The Nerdy Nurse. These three women are doing amazing things in their respective communities. They are the bloggers I want to be when I grow up.

It was also awesome to meet artist and teacher, Michael Jacques, whose artwork is featured in the Renwick Gallery in the Smithsonian American Art Museum. He gave us what seemed like a full semester’s worth of tutoring about abstract art in 15 minutes, then we painted our very own masterpiece by bringing the survey findings to life using abstract art.

Michael Jacques & Charis Hill — Artist Michael Jacques and Charis Hill

I picked the 20% number from the list I shared above from the Salix survey: “20% of these patients reported taking more than 10 prescription medications on a regular basis.” I got a little carried away with the paint, but the result was a powerful piece of art that sucked me into a black hole and spit me back out. Later, that evening, we unveiled our work to a group of medical professionals who had been invited for another educational program.

Before dinner, ChronicBabe asked me why this event was important. I only had to think a moment before responding, “Patients need to be able to talk about our s**t.”

I believe it’s important to have these conversations in spaces shared by pharmaceutical staff, physicians, patients, and more. We are all stakeholders after all, and yet the patient voice is often left out. I’m appreciative to Salix for gathering a diverse set of influencers to share perspectives and learn from each other.

Influencers — Leslie of Rheumablog, Charis of BeingCharis, Brittney of The Nerdy Nurse, and Jenni of ChronicBabe

INDICATIONS

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.