If you're living with a chronic illness, you're in the right place.

Saturday, January 25, 2014

Living in the 5%

11:33 AM Posted by Tiffany Taft , ,
No, I'm not writing about income inequality.  Good lord, I'm not that crazy.  I'm referring to the experience of experiencing the "rare" outcome.  You know the statistics.  They come with every treatment or procedure that we're subjected to.  The percentages are typically small, indicating the risk is very small, that something will turn out other than positive.  If they weren't, the FDA would punt these things right off the market.  Even medications with so-called "black box warnings" have risks for serious side effects under 10%.

So what happens when you find yourself in that elite group of people who fall into this "rare" situation?

I've worked with clients who are in this club and have personal experience, as well.  According to the "official" statistics for the widely used drug Infliximab (brand name Remicade), around 3% of people in a sample of about 5000 patients experienced a reaction during one of their infusions.  3% sounds like pretty good odds to me.  Heck, when I run statistics for the research I do if we get a less than 5% chance our results are due to chance, we get published.

Unfortunately for me, I had an infusion reaction during my 3rd dose of Infliximab.  Even with medications like benadryl or prednisone to try to prevent it, my body said nope, we're not doin' this.  3%.

In my work as a health psychologist, I've spoken with physicians about these low-probability problems that patients experience, and the reaction tends to be "well, the odds that that's happening are so low..."  I remember distinctly a woman I was working with who had chronic stomach pains but her tests were entirely normal.  I reviewed the side effect profiles of her medications for other conditions and found that for one of them, 2% of patients experienced the same symptoms she was having.  Her gastroenterologist was skeptical this was the cause but when she stopped the medication, her symptoms went away.  Was that a coincidence or did she fall into the 2%?

For those patients who have experienced living in the 5% their subsequent reactions to statistics seem to follow similar logic:  Well if I got that and the odds were so low, why wouldn't another low odds problem also happen?   Being told "you only have a 4% chance of this side effect" when you've already had a 4% chance side effect loses its comforting quality.  Even though the odds of 2 entirely separate events are not related.  We start to think there's something "special" about us and our risks are much higher than those listed on the drug information sheet.

What can then happen is we have a patient who's concerned about a rare side effect who may be seeing a physician who believes the percentages are solid and shouldn't impact treatment decisions, thereby creating a rift in the care team.  Patients may feel pressured or anxious about their decision, physicians may feel unheard or their expertise challenged.

There's no easy answer to this conundrum.  Have you experienced the 5%?  What's your take?

Dr. T

Tuesday, January 21, 2014

Can't Buy Me Love

2:14 PM Posted by Stephanie Horgan , , ,

With all the stress that goes along with a chronic illness, there are emotional and mental aspects that go along with it. These are things that Tiffany and I spend time talking about with our patients. But on top of all this, illnesses cost us a lot of money! Financial burden is a large source of stress and I wanted to share an updated list of resources for patients with Inflammatory Bowel Disease. Last year I posted about a few of these organizations, but it is important to check back every six months or so to see if their funding has changed. 

Here is an updated list of resources, and many of the links below are also helpful for other chronic illnesses, so please explore and save some money. If you have money leftover (doubtful!), donate to a cause you like or to someone trying to find a cure for your illness! Some organizations focus on co-pays, some are for medication costs, and some are for other miscellaneous costs. Let me know if you find others! 

  • Patient Access Foundation: This is a non-profit that helps with co-pays for some medications. Click link for list of medications covered. 
  • Prescription Hope: This is a program for uninsured and under-insured patients to help with medication costs. There is a $20 annual fee and a $20 per prescription per month fee. Many IBD medications are available. 
  • NeedyMeds: This is a website that connects patients with financial assistance programs for expensive medications. Here is the link for brand name medications, but they also have one for generic medications as well. 
  • Oley Foundation: This organization has a Medical Equipment and Supply Exchange program, where their donations are updated weekly. You only pay for shipping. It is ideal for ostomy patients and patients with tube feedings or PICC  lines.
  • OstoGroup: This organization provides free ostomy supplies to uninsured patients worldwide, leaving the patient to just pay shipping and handling.
  • NaviDebt: This is an organization that has tips on how to get out of medical debt and negotiate medical bills.
  • Chronic Disease Fund: This is a non-profit organization that provides financial assistance to patients. Currently they are not taking any new IBD patients, but check back periodically. 
  • Healthwell Foundation: This is a nonprofit organization that provides financial assistance to patients.
    Currently they are serving only IBD patients with Medicare, but check back periodically for updates.

Sunday, January 19, 2014

Medical Marijuana: The Good, the Bad, the Ugly

9:48 AM Posted by Tiffany Taft , ,
Marijuana is in the news a lot lately, what with Washington state and now Colorado making recreational pot legal and readily available.  As of the writing of this entry, 20 states and the District of Columbia have legalized marijuana for medical purposes, including our home state of Illinois.  Our goal isn't to discuss the controversy or debate about if pot should be illegal, rather shed some light on what people living with chronic illness think about it, how often they use it and for what conditions, and some of the side effects it can have.
In 2009, worldwide marijuana use, medical or recreational, was between 3 and 5%; in the United States, rates were around 11%.  Unfortunately marijuana isn't the panacea that it's biggest supporters claim, but it does have documented health benefits.  It isn't the calamity that it's biggest opponents claim, either.  Like with everything, the reality lies somewhere in the middle.  There are several potential negative effects of chronic marijuana use, and while it is not as addictive as many other drugs, people can get hooked on it.  Just like we can get addicted to anything that makes us feel good and happy - including food, gambling, and candy crush.

I'm here to discuss the use of medical marijuana in the chronic illness-sphere, rather than it's implications in things like schizophrenia, anxiety, or cognitive functioning.  That's for another time or blog.

First, what diagnoses are approved for medical marijuana use?  According to the US Government Accountability Office, these:  Alzheimer's Disease, Anorexia, AIDS, Arthritis, Cachexia, Cancer, Crohn's Disease, Epilepsy, Glaucoma, HIV, Migraine, Multiple Sclerosis, Nausea, Pain, Spasticity, and Wasting Syndrome.  What does the (limited) research say about marijuana's effectiveness in some of these conditions?
  • A May 2013 poll found that 85% of Americans think that adults should be allowed to use marijuana for medical purposes if a physician prescribes it.  
  • A 2013 informal poll in the New England Journal of Medicine found that 76% of clinicians who responded to a case report about medical marijuana use for a cancer patient stated they thought marijuana should be available and used for medicinal purposes.
  • A 2013 study of 292 patients with Inflammatory Bowel Disease found that 12% actively used marijuana and 39% had used it at some time in the past.  However, only 16% of these patients said they used marijuana for treating their IBD symptoms.  Those who used marijuana to directly treat their symptoms rated it as "very helpful" in controlling abdominal pain, nausea, and diarrhea.  50% of the "never users" reported they'd be interested in trying it if it were legally available.  
  • For patients with HIV/AIDS, marijuana is used to treat loss of appetite and related weight loss.  A 2013 review of research in this area found that the evidence that marijuana significantly helps people gain weight was lacking. 
  • While marijuana may not help with weight loss, researchers at the Mount Sinai School of Medicine recently found that some of the chemicals found in marijuana may inhibit the activity of the AIDS virus, HIV.  
  • Many patients with multiple sclerosis report that marijuana helps with symptoms like spasticity and tremor.  The research is mixed, with some studies finding some benefit and others showing conflicting reports between the MS patient, who said their symptoms were better, and their doctors who rated them as not significantly different.  A 2011 study did find that MS patients who used medical marijuana showed negative effects on their thinking ability, scoring significantly worse on measures of information processing speed, working memory, and executive functions. 
  • A 2006 study evaluated medical marijuana to treat Rheumatoid Arthritis in 58 patients and found that over a five-week period the group using marijuana reported significant improvements in morning pain on movement and sleep quality compared to the placebo group.
  • What about marijuana's role in treating chronic pain?  Especially neuropathic pain due to nerve damage? A review of 18 clinical trials that included 766 people who used marijuana for non-cancer-related pain. 

 Fifteen of the 18 studies found that marijuana worked better than a placebo for pain relief.  Four four trials reported that marijuana improved sleep. Most of the studies reported that side effects were mild enough that people did not drop out of the studies.
What's the take-away?  Medical marijuana appears to be helpful for some people, although some studies show marginal effectiveness.  In some cases, marijuana can make a condition's symptoms worse, like in cognitive functioning in MS patients.  Medical marijuana is here to stay as it becomes more widely accepted by patients and providers alike.  We'll be posting more about this emerging area this year.

Dr. T.

Sunday, January 12, 2014

In the Spotlight: Achalasia

6:46 AM Posted by Tiffany Taft , , ,
I'm kicking off our "Rare Disease of the Month" series for 2014, where Steph and I bring awareness to 12 chronic illnesses that don't get much press but still can deeply affect those who live with them each day.  I thought I'd start with a rare digestive illness, since that's my schtick, called Achalasia.

Snapshot:  Achalasia is a rare condition that impacts about 300,000 Americans.  It makes eating quite challenging as the muscles in the esophagus stop working properly due to a breakdown in the nerves responsible for moving food to the stomach.  People with Achalasia are at risk for developing esophageal cancer and should be monitored by a gastroenterologist.  There is no cure and treatments are limited but can be effective in keeping symptoms under control.  Thus, there are significant impacts on the person's social and emotional life.

What is it?
Achalasia is a condition where the nerves in the esophagus break down for an unknown reason.  The result is difficulty swallowing foods and liquids because the normal movement of the muscles of the esophagus (aka peristalsis) is disrupted.  The muscles higher up the esophagus may not contract properly to push food down to the stomach or the gatekeeper to the stomach, something called the lower esophageal sphincter, fails to relax and stops food from entering the stomach.  Over time, this backup of food and liquids can stretch out the bottom of the esophagus creating a space for them to accumulate.  Not a good thing.  People with Achalasia are at increased risk for esophageal cancer, so they require regular follow-up and monitoring.

How common is it?
Current estimates are that Achalasia affects about 1 in 100,000 people, or about 300,000 people in the United States. People are usually diagnosed as adults and it becomes more common with increased age.  Men and women are affected equally.  It's very rare to see Achalasia in children and adolescents, but it does happen.

What are the symptoms?
Most often people with Achalasia report that they have a hard time swallowing both solid food and liquids, and they feel like whatever they've eaten gets stuck in their throat or esophagus.  Other symptoms include heartburn, chest pain, hiccups, and regurgitating swallowed food or liquids.  People with Achalasia often lose weight because the food they eat never really makes it into their bodies for digestion, or they begin avoiding food because eating becomes unpleasant or painful.  Symptoms start out slowly and gradually get worse as the nerves break down which means many people don't go to the doctor until their symptoms are pretty severe.

What about diagnosis and treatment?
Four tests are used to diagnose Achalasia:  Upper endoscopy, barium swallow, chest x-ray, and esophageal manometry.  An endoscopy is when a doctor passes a tube with a camera on the end to view structural changes in the esophagus, so if the bottom of the esophagus has stretched out he/she will be able to see this via the camera.  In a barium swallow, the patient drinks a chalky substance and then x-rays are taken.  The barium concoction shows outlines of the esophagus more clearly and any changes can be seen on the films.  Esophageal manometry is a specialized test that measures the pressure in the esophagus and how this pressure changes as the muscles contract.  Manometry can measure if the muscles are pushing as hard as they should be and if they're relaxing as much as they normally would.

Houston, we have a problem.
There is no cure for Achalasia, but there are a few medications and procedures that can help manage symptoms.  Some patients undergo surgery to correct damage to the esophagus.  One procedure uses a balloon to stretch the lower esophageal sphincter so it allows food to once again pass into the stomach.  Another strategy is to use botox injections to temporarily paralyze the nerve that tells the lower esophageal sphincter to relax.

What is the social and emotional impact?
Unfortunately there are only a few studies that look at this in Achalasia patients.  My colleagues and I at Northwestern are working to change this.  But here is what we know:
  • Children and adolescents with Achalasia have considerably poorer quality of life when compared to kids with inflammatory bowel disease (Crohn's Disease, Ulcerative Colitis) and their healthy peers.
  • Adults with Achalasia report significantly poorer mental well-being, reduced socialization, and greater impact on their physical functioning than people with Gastroesophageal Reflux Disease (GERD) and their healthy peers.
  • 74% of adults report their disease limits their lifestyle including 37% reporting that Achalasia interferes with work, missing an average of 10.2 days in the last 6 months.
  • Patients with Achalasia report significant concerns about the chronic nature of their disease, especially combined with limited treatment options and the risk of getting esophageal cancer.
Hope this was informative!  Stay tuned for a new rare disease post each month.

Dr. T

Tuesday, January 7, 2014


3:29 PM Posted by Stephanie Horgan , , ,
Happy New Year, everyone! We are wishing all our readers a happy and healthy 2014. Now that we are past the hectic holiday season, we are left to look ahead and plan for the upcoming year. In reflecting on my past year, I noticed how my brain immediately went to the things that went wrong or the things that didn't come to fruition like I had hoped. Its funny how that happens. Part of it is human nature- we are hard-wired to remember and avoid situations that were painful for us. But there is an element that I want to focus on today, and that is comparison. It is when I start looking at others who have what I want, that I start coming up short. When I made a list of the top then things that happened this year, I was astounded by how good I felt! That all goes out the door when I start the game of comparison.

Our society is built on this concept, and there isn't an advertisement out there that doesn't tap into this. We are supposed to look at the various marketing in the media and remember just how much we don't measure up. If only we had thinner, healthier, fitter, more beautiful, less-aging bodies. If only we had more money to buy more stuff- cars, houses, vacations, college educations, electronics, toys. If only we had more relationship success- more friends, a spouse, a better marriage, kids, grandkids. We look at the media and find the ways our lives don't measure up. "Why does so-and-so have it all together, and I don't? If only I had ____, I would be happy." These are signs of a losing battle with comparison.

Don't get me started on the effects of social media! I was reflecting on how difficult this year was for me, although it was full of wonderful moments too. If you look at any of my social media posts, you would have no idea some of the struggles I dealt with. Why? Because people don't post struggles, they post victories. Even when I was in the hospital for close to a month last December, I posted the little victories, not the daily Heparin bruises, or the discouraging readmissions from vomiting. People tend to post life highlights, and when you are dealing with a chronic illness, there may be long periods of illness where you don't post. Fortunately there are secret groups where patients can post all sorts of brutal honest accounts of their current suffering, but this is hidden from the general public. Instead, when patients are sick and confined to their house, they sometimes spend hours looking at all the other fun adventures that healthy people are having, which in turn makes them more miserable!

It's the people closest to us that know the depths of our lows that are truly the best reminders when reflecting on the past year. There are a few close family and friends who can walk through the valleys with us and also celebrate on the mountaintops. That makes life truly worth it. So as we look forward to the rest of 2014, let's give thanks for those who have walked the journey of chronic illness with us. Let's remember the power that the media has to skew our perspective, especially on our down days. Instead of comparing illnesses, lets find commonalities and encourage each other. Let's fight back against comparison and live in the present moment- its all we truly have!

Saturday, January 4, 2014

New Year, New Look

6:09 AM Posted by Tiffany Taft ,
Just a quick hello and Happy New Year to you!

We've updated our blog layout to be a bit more interactive and hopefully easier to navigate.  If it's lousy or a PITA, please let us know.  Please also let us know if there are any topics you'd like for us to cover in the coming months and we'll do our bestest to make sure we write about them.  Here's a preview of some things we've been chewing on for 2014:
  • The doctor-patient relationship, including knowing when and how to fire your physician.
  • Medical marijuana, what it can help with, what it may harm, and what people think about it.
  • Complimentary & Alternative Medicine (aka CAM), including acupuncture, biofeedback, and herbal supplements.
  • Each month we'll highlight a rare chronic disease, give an overview and review research (if any) on social and emotional issues.
  • The impact chronic medical illness has on siblings.
  • Transitioning from pediatric to adult medical care.
  • An overview of different types of psychiatric medications and some of their "off-label" use to manage chronic medical conditions.
And much more....

We're also looking for guest bloggers to contribute to our little corner of the internet.  If you have an idea for a post that relates to chronic illness that we haven't covered before, please contact us at info@opbmed.com.

Finally, here are our top 10 posts from 2013 by pageviews as of today:

  1. 20 Things to Try in 2014 
  2. Chronic Illness Catch 22
  3. A Day in the Life
  4. Navigating the World of IBD Diets
  5. The Role of Stress in IBD (Part 1)
  6. The Physical Weight of IBD
  7. Chronic Illness & Suicide
  8. Dating & Chronic Illness
  9. Emotion Focused Coping
  10. Workplace What The?