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

Sunday, December 29, 2013

20 Things To Try in 2014

7:08 AM Posted by Tiffany Taft , ,
2014 is upon us. Out with the old, in with the new. We've entered the time of year where people reflect on the past year and look ahead to new beginnings.  Resolutions are made, some of which are kept while others fall by the wayside because, as we all know, old habits die hard.  I'll be turning 38 tomorrow (wait, what?) and I can say a lot has changed in my life since I was 26 and diagnosed with my chronic illness.  I'd like to say I've grown wiser in the past 11+ years, and not because I went to graduate school, but because of the life lessons that living with Crohn's has taught me.  With that, here are 20 things all of us living with chronic illnesses should strive for in the new year:

1.  If you haven't accepted your diagnosis, work towards that.  It's one of the most freeing things a person with a chronic illness can do.

2.  Connect with people who get it, whether it's online, at meetups, or in a support group. They don't necessarily have to have the same diagnosis, but understand the ups and downs, lefts and rights an illness brings to the table.

3.  Let go of people who don't understand and stress you out, even after you've tried to help them do so.

4.  Slow down.  No really, slow. down.  Or as a professor of mine in grad school once said "Don't just do something, sit there."  Try to find harmony in life and with your illness.

5.  Practice relaxation when you're not feeling super stressed out.  Most people don't really know how to relax, and the time to learn isn't when life is pushing you along at 100 mph.  Take a yoga class, or get a yoga DVD.  Try meditation or mindfulness.  It's harder than it looks, but will pay off big time when you need it most.

6.  Keep up to date on your illness and its treatments.  Medicine is rapidly evolving and we need to understand what our doctor is recommending (or not recommending). Use reliable sources like WebMD, Mayo Clinic, or PubMed.  Knowledge is power.  Be prepared for your 15 minutes.

7.  If you don't like your doctor, find a new one.  The doctor-patient relationship is very important in predicting that you'll do well with your illness.  You should feel like you're part of the team, not a passive recipient of orders.

8.  If you don't exercise regularly, start.  You don't have to be able to run a half marathon, or even a 5K.  Simple walking is sufficient, but if you can do more go for it.  It's as good as an antidepressant for your mood, reduces stress, and can help with pain and fatigue.

9.  Whether it's a new relaxation method or exercise, choose something that you enjoy, not something you think you should be doing.  This, along with setting small goals, is a huge predictor of whether or not you'll stick with it.

10.  Kick excessive worry to the curb, especially catastrophizing.  Even if the worst case scenario happens, odds are you can handle it.  Look what you've handled already and you're here to tell the tale.  Don't discount your strength when the "what ifs" get rolling.

11.  Live in the moment as much as possible.  Spending too much time in the past often leads to depression and spending too much time in the future can mean anxiety.  Enjoy today.

12.  Embrace life's grey areas and let go of black or white, all or nothing thinking.  Rarely is anything in chronic illness-land an absolute!

13.  Accept the changes to your body from your illness as beyond your control.  We can hate our scars and be ashamed of them, but it does nothing to make them fade away. It only adds new scars to our psyche.  The good news is we can make those fade by changing our thinking.

14.  Start writing down your thoughts and experiences.  Whether it's a blog, an anonymous message board, or in an old fashioned paper journal, writing has several positive effects on our mental and physical well-being.

15. Do something that's really meaningful to you every day.  This is one of the "secrets" to happiness.

16. Know that it's okay if you cannot solve the unsolvable problem that is a chronic illness.  You're not a failure if you don't achieve remission or if you don't respond to treatments like you "should."

17. Pay attention to your self-talk and if it's kind.  If it's not, try to understand why and work through those reasons.

18. If you're like me and go through bouts of insomnia, check your sleep habits against recommended "sleep hygiene."  There are probably things you can adjust that will pay off big.

19.  If you've kept your illness hidden from everyone, make it a goal to tell 1 person in 2014.  We know that disclosing an illness is much better, and less stressful, than trying to keep it hidden.

20. Look for the humor in your situation.  Kurt Vonnegut said it best:
Laughs are exactly as honorable as tears. Laughter and tears are both responses to frustration and exhaustion, to the futility of thinking and striving anymore. I myself prefer to laugh, since there is less cleaning up to do afterward — and since I can start thinking and striving again that much sooner.
So it goes.  Here's to a happy and healthy 2014!

Dr. T

Wednesday, December 18, 2013

The Physical Weight of IBD

7:32 PM Posted by Stephanie Horgan , , ,
Weight no more...I finally am writing a blog entry on the physical weight of IBD. I had mentioned it in an earlier post and was reminded of this topic by a brilliant entry by Christina at The Crohn's Diaries and a video by our friends at the Great Bowel Movement called the Weight of IBD.

In a culture obsessed with appearances, what's a patient to do? When diagnosed with a chronic illness, patients young and old want to know, "Am I going to look different?" The answer with IBD is usually yes, at least at times. The classic example is when a patient is on Prednisone. You want to see weight gain?! You want to see water retention?! In regards to appearance, these powerful steroids can fluctuate weight significantly, as well as create the moon face phenomenon. I liked to call it "chipmunk cheeks" and this was something I personally endured for about a year in college. Literally every day I would get asked, "Did you just get your wisdom teeth out?" By the end of that year, I was about ready to punch anyone that asked that insensitive question in their non-moonface so that they would join me. I won't go into all the mental or emotional side effects that go along with Prednisone, but I love this fake ad.

Even if you never come into contact with Prednisone, your weight may still fluctuate significantly. As IBD patients, we have chronic diarrhea which takes a toll on nutrition. Many patients can be underweight and have stunted growth. When in a flare, a patient may have a very limited diet which they could eat. Some doctors recommend a "brat" diet (bananas, rice, applesauce, toast) if you are needing to go easy on your gut. For each person with IBD, there is a various diet or version of a diet that exists. Everyone's restrictions are different and can fluctuate throughout their life. 
Because food can push someone over the edge into a flare, or cause a blockage or exacerbate a stricture, it sometimes becomes the enemy. Restricting food can make patients feel like they have control over their illness, and sometimes can get pretty extreme. With all the anxiety around eating and restrictions over food, this can cause much stress and look more and more like an eating disorder. Even patients who are not restricting food may get accused of having an eating disorder because of their inability to keep weight on, as their body is not absorbing nutrients. 

On the other hand, food is a comfort for many people. When patients are dealing with the stress of a chronic illness like IBD, food is a way to numb out. Instead of feeling sad about not being able to go out with friends, you may eat to feel full. Will feeling physically full make you feel emotionally and socially full, like your life before IBD? No. But it will sure give you some endorphins to make you forget about that. Said perfectly by Christina at The Crohn's Diaries blog, "I have yet to read a journal article or medical study that links Crohn's disease and ulcerative colitis to eating disorders, but how can we not have a complicated relationship with food?"

Some patients find themselves overeating or stuffing themselves with their "safe foods" as a way to fill the void they feel from depriving themselves from other foods. Some other patients may get angry about feeling limited by what they can eat and binge on their "unsafe foods" almost as a form of punishing their uncooperative body. Considering IBD is a disorder all about the digestive track, no wonder we have eating issues! I think its importance patients with IBD get assess for disordered eating and if it becomes an issue, to get treatment around the mental and emotional impact of having a disease where food and digestion is so central.

I have met many people with IBD who also struggle with keeping weight off. Many people with IBD can't eat the fresh fruits and veggies, and can eat unlimited carbs. And that doesn't take a nutritionist to predict a weight gain. So this is a shout-out to all those struggling with keeping weight off in the face of IBD, and to the shame they may have. I have had more than one person ask me, "how can someone with Crohn's be overweight?! Isn't that impossible?" And my answer is a resounding NO! Because of the variability in disease activity, medications, and food restrictions, there can be very obese people with IBD. There is no IBD body type, and those patients that do struggle with their weight in the midst of IBD, do not need an additional stigma to deal with. The moral of the story is this: IBD bodies do not look the same way. We are not all tiny, skeletal bodies; we are all shapes and sizes. So together, let's look in the mirror and embrace whatever size we are, whatever body we have, and think about the amazing things we have overcome. Its not about our weight, its not about the scars, its about the resiliency and wisdom we have gained from having IBD. 

Tuesday, December 10, 2013

Chronic Illness Catch-22

One of my favorite books I read in college was Joseph Heller's Catch 22, a satire about World War II pilots who find themselves in a really challenging situation, whose title has made it into the English vernacular.  To find oneself in a "Catch 22" is to be in a no-win situation, a double bind, you're-damned-if-you-do-you're-damned-if-you-don't if you will.

I was meeting with a client recently and the topic of normal test results came up.  What do normal test results mean to people living with a chronic illness?  They should be good news, right?  We talked about how she didn't feel just happy or relieved, but was also kind of angry about it.  To the person not in these shoes, being angry about normal test results seems really counter-intuitive.

There was this split in her emotional reaction:  I'm happy but I'm irritated.  Part of her wanted the results to be off, just a little.

Even though that would be bad news in terms of her disease, and she would likely not be dancing in the streets with joy, abnormal test results would lend some legitimacy to her ongoing symptoms.  We talked about this at length and how you can be simultaneously thrilled and pissed off about numbers on a sheet of paper.

Scene from the best movie on.the.planet.
I reflected on my own experience with Crohn's disease the past 11 years, now.  I've come to expect normal test results most of the time, even if I'm feeling pretty punky.  Even during the height of my disease where I was in the bathroom 20 times a day, my c-reactive protein (CRP, a commonly used blood test for inflammation) came back just under the cutoff for normal.  WHAT?!  I feel like I got hit by a mack truck and probably broke my toilet, yet my tests are NORMAL?  My favorite experience was when I underwent a test for vitamin B12 absorption.  I was severely deficient in B12 on a blood test, but the absorption test came back completely normal.  No, you're cool when it comes to absorbing B12.  Not sure why it's dangerously low, though.  My Crohn's is located in the terminal ileum, where B12 is absorbed - so my reaction was "duh?"

My brain was full of you know what.
Rather than being relieved, I was upset and frustrated.  Okay, let's be honest: it really drove me insane and I lost a lot of faith in medicine.

With this Chronic Illness Catch 22 also comes reactions from others.  You've been feeling pretty lousy and are in a lot of pain the past few weeks but your entire blood panel comes back normal.  How do you explain that to your friends and family members?  Will they be less understanding because the numbers don't jive with the symptoms?  It's entirely possible.  Doubt creeps in, not only in their minds but in our own.  What's going on if I look good on paper?  Why don't I feel better?  In these reactions our illness experience can lose legitimacy.

One of the best things my former gastroenterologist told me was that he never bases his clinical decisions solely on test results.  They're not always accurate (hence my B12 experience) and it would be wrong to disregard the patient's self-report over numbers from the lab.  Don't get me wrong, he wasn't implying fundamental flaws in our laboratory testing and that they shouldn't be trusted.  Rather, they're not the whole story.  Subsequently I became less obsessed with these tests and normal results, and changed the way I thought about them.  It was good news that my CRP wasn't through the roof, but it didn't mean I wasn't sick or my symptoms weren't legitimate.

So, my friends, this is what I call the chronic illness catch 22.  We want to be well, we want our tests to come back clean.  But sometimes good news doesn't feel so good.  If you're feeling this way, stop and think about why.  Are you stuck in the Catch 22?

Dr. T

Saturday, December 7, 2013

HIV, Stigma & Mental Health

8:58 AM Posted by Tiffany Taft , , , ,
With the passing of Nelson Mandela, the world's attention has turned to South Africa and the important work he did to fight apartheid and inequality.  Mr. Mandela also worked tirelessly to reverse the catastrophic effects of rampant HIV infection among South Africans.  Up to 20% of women of reproductive age are HIV positive there, and overall estimates put 11% of the population infected.  Those rates are staggering compared to the rest of the world - here in the U.S. HIV prevalence is estimated at 0.4% and European rates are around 0.3%.

Image via Kaiser Family Foundation
Thankfully, anti-viral medications like HAART have changed HIV from a death sentence to a chronic condition that, with proper treatment, many people are able to live with for decades. Because I'm old, I remember when AIDS first appeared in the early 1980s in the mainstream consciousness, including watching the story of Ryan White unfold up until he died at the young age of 18.  People were afraid and HIV stigma was rampant.

Simply getting diagnosed with HIV is traumatic. The negative social fallout that many people experience only compounds the emotional response. Even 30 years later, ignorance about HIV remains and about a quarter of people with HIV/AIDS report discrimination or stigmatizing experiences, even from healthcare providers.

Now that people are living longer with HIV, what are some of the mental health effects we see?  
  • Approximately 22% of people living with HIV/AIDS will develop depression.  This can come from several factors - emotional reactions to having the diagnosis and all that goes with it, side effects from HIV medications, or changes that happen to structures in the brain from the disease itself.
  • Around 16% of people with HIV/AIDS have significant anxiety.  11% have had recurrent panic attacks.  Women seem to be more affected than men.  Researchers have found that as people live longer, rates of anxiety are increasing.
  • Sleep problems and insomnia are a real problem for many people with HIV/AIDS.  Up to 40% say they've had trouble sleeping in the previous year, sleeping less than 6 hours per night.  10-20% say their insomnia is severe.
  • Suicide rates among people with HIV/AIDS are 3 times that of the average population, which is a significant reduction from before effective medications were discovered.
  • Mental health issues are predictive of poorer outcomes but the reasons for this are complex.  People may skip medication doses or engage in other risky behavior.  Stress has direct effects on the immune system, and may play a role in exacerbating HIV.
We've come a long way in the past 3 decades in treating HIV and reversing the fate of people who become infected by this virus. Stigma has improved but remains a significant problem, and people living with HIV/AIDS are showing many of the same mental health effects we've seen with other chronic illnesses. There's still much to be done.

"Difficulties break some men but make others. No axe is sharp enough to cut the soul of a sinner who keeps on trying, one armed with the hope that he will rise even in the end." ~ Nelson Mandela

Dr. T.

Monday, November 25, 2013

6 Antidotes for Holiday Stress

Thanksgiving week is here.  The holidays can be considered a stressful time of year for many of us - uncle Pete just loves to talk politics while passing the mashed potatoes or how am I going to find room for my cousin who tends to overstay his welcome?

For those living with chronic medical illnesses, the holidays may mean trying to find the energy to go to Thanksgiving dinner, having to explain to Aunt Bethany why they can't eat the stuffing for the 12th time, or struggle to maintain conversation while experiencing nagging pain. It's enough to send the stress meter off the charts, and we may begin to lose it a little.

Every year we know the holidays are coming, but every year we get stressed out.  That doesn't really make a whole lot of sense, does it?  Holiday stress may be inevitable, but the degree to which it hits us is really up to us.  Here are 6 things you can do to help dial down that holiday stress meter this year:

 1. Let Go of Perfectionism

A lot of our stress is self-inflicted.  We want things to be great, perfect even.  Who doesn't?  It's okay if things aren't.  Do your best and if things don't turn out as you pictured in your mind, it's not a catastrophe (see #2).

2.  Stop Catastrophizing

When things don't go our way, or even don't seem like they're going to go our way, we have this tendency to really blow stuff out of proportion - what we therapists call catastrophizing.  The turkey being a little on the dry side or grandpa making an inappropriate comment isn't the equivalent of a nuclear bomb going off.  And just like holiday problems are nothing like being nuked, where you're pretty much up a creek without a paddle, IF the worst case scenario happens you can handle it.  Remember all the other times you dealt with horrible situations.  Were they unpleasant?  Sure.  Did you just want it to be over with?  Absolutely.  But you're here, and probably wiser because of it.

3.   Don't Discount the Positive

It's so easy to focus on what's wrong with a situation. And in this process, we can ignore what's right.  In almost every situation that feels catastrophically bad, there's an alternative viewpoint that includes something that's good.  I'm not pushing the power of positive thinking; rather, the power of realistic thinking. Remove the negative filter.

4.  Keep Emotional Reasoning in Check

I feel, therefore it must be true.  If I feel like dinner is going horribly and people are having a bad time, or my friend must hate the gift I gave her (see #5), then it must be the case.  When we think with negative emotions, our reality becomes a bit distorted. There may be a significant disconnect between what we feel (and think) is happening and how others see the situation.  

5.  Quit Mind Reading

Like Clark peering into a Christmas tree, we can try to peer into other peoples' minds to guess what they're thinking.  We're not Miss Cleo (too young for that reference?).  This one is tough because there's really no way to be absolutely sure of what others think about us or a situation, so it requires a bit of faith and trust.  Unless you have some real evidence to back up your beliefs, there are 2 options:  let them go or ask the person.

6.  Burn Off Some of that Steam

You might think that the reason there are Turkey Trot 5Ks is to help burn off some of the Thanksgiving calories. Perhaps.  But a better reason is to help burn off stress.  Not ready to run 3.1 miles?  Make time for whatever your favorite stress-relief activity is.  Don't have an activity?  Go for a 20 minute walk.  Think of your favorite vacation spot and picture yourself there for 10 minutes.  Take 10 deep breaths.  Channel your inner Buddha.  Pray.  Write down your frustrations in a notebook for 5 minutes.

These suggestions may not cure holiday stress, but they will help.  I promise.

Dr. T

Sunday, November 17, 2013

'Tis the Season: Thanks. Giving.

7:21 PM Posted by Stephanie Horgan , ,
November is flying by! Tiffany and I have been busy with multiple community events and speaking engagements, and are looking forward to seeing some of you this Tuesday night at Skokie Hospital for all our IBD patients who live on the north shore of Chicago. As the days seem to fly by, Thanksgiving is only 11 days away, and then come the winter holidays. As we take time to reflect on how much we have to be thankful for, I have to so much joy for how much my own health has improved over this year. Less than a year ago, I was inpatient all month with surgery complications, and I am thrilled to be out and about, working, making a difference, and able to be independent.

Tonight I watched a 60 Minutes show where part of it was on The Giving Pledge. I had never heard of it before, and wanted to pass it along. It is a commitment by the world's wealthiest individuals to dedicate the majority of their wealth to philanthropy. The qualification to be in this elite club is to be at least a billionaire, and be willing to donate at least 50% to charity. It looks like the list is up to 115 people, including the well-known Bill and Melinda Gates. I loved this quote from them: "We have been blessed with good fortune beyond our wildest expectations, and we are profoundly grateful. But just as these gifts are great, so we feel a great responsibility to use them well." As a side note, one of the billionaires is the inventor/owner of Spanx, so ladies, the next time you squeeze into a pair, you're giving back.

As we enter the season of counting our blessings and being grateful, I encourage you to brainstorm ways to express your gratitude and give back. There are so many organizations to give to that it can be overwhelming, but if you have a chronic illness, try donating to your national organization to help find a cure. Or find a global cause you are passionate about, like this one in Paraguay, where trash dump workers sift through garbage to make recycled musical instruments for an orchestra for street kids. Before you give, check out Philathropedia to see your organization's financial data, as well as its strengths and areas for improvement.  Happy giving...and please post where you invest so we can join causes!

Friday, November 15, 2013

Does Therapy Really Work?

8:30 AM Posted by Tiffany Taft , , , , , ,
Being a psychologist in the medical world, I'm often met with some skepticism about what I do.  This can come from patients, their families, physicians - you name it.  There is good reason for questioning if psychotherapy is helpful for people living with a chronic medical illness.  Hell, there's good reason to question if psychotherapy is helpful for anyone.  Not because it isn't, but because questioning things is good practice.

Question the evidence...maybe without all the yelling.
The great news is psychotherapy is helpful for a slew of problems, and specific types of therapy are more effective than others.  I personally trained in Cognitive Behavioral Therapy and this is what I use most of the time.  I was also trained in other major approaches - existential/humanistic, psychodynamic, and family systems - which I may borrow from from time to time if it will benefit the person I'm working with.

A popular buzzword in medicine is evidence based treatment.  That is what it sounds like:  is there evidence based in sound, peer-reviewed research to backup the claim that a treatment will help relieve symptoms.  So, is psychotherapy an evidenced based treatment for chronic illness?

Lots of this floating around out there.
The answer is Yes - with an asterisk.  The reason for the caveat is that the research on psychotherapy for chronic illness and what it exactly helps with is evolving, and depending on the research study it may or may not do much.  Such is the nature of clinical research.  There are some swell people out there who like to review a lot of research studies in one area and write a comprehensive review so we don't have to read each study independently, unless you want to.

In the November issue of the journal Inflammatory Bowel Diseases there is such a review article on if psychotherapy is helpful for people with Crohn's Disease and ulcerative colitis.  They looked at 16 studies that used a variety of approaches to treatment and found:

  • Cognitive Behavioral Therapy (CBT) and Psychodynamic (PD) Therapy both help with anxiety and depression related to life with IBD, but did not help as much with physical symptoms or quality of life.  Of the two approaches, CBT was more convincing as an evidence based treatment than PD.
  • Medical hypnotherapy works well to treat physical symptoms and improve quality of life.  There are only a few studies in this area, so the results are positive but preliminary.
  • Stress management interventions (like relaxation training) don't do much on their own for psychological or physical symptoms.
Based on these findings, a combination of CBT and Hypnotherapy would be best for people living with IBD who are looking to feel better emotionally and physically.  Personally, I've used this approach and find it really is helpful for most people.

Got Stress?
Another emerging area of psychotherapy for chronic illness is the use of Mindfulness, a concept that really stems from Eastern religions like Buddhism and was applied to psychology by John Kabat Zinn.  A study in the November issue of the journal Health Psychology found that mindfulness-based stress reduction treatment reduces the stress response in the body, including heart rate, blood pressure, and levels of cortisol (aka the stress hormone) in the body.  This is an important consideration for people living with chronic autoimmune diseases as stress influences how the immune system functions.  This study didn't specifically evaluate the mindfulness intervention in people with chronic illness.

If you're interested in mindfulness, here's a nice resource on the topic with some exercises you can try on your own.

So yes, dear reader, therapy really can help.  The key is using evidence based treatments and recognizing what they do and do not seem to change.

Dr. T

Sunday, November 3, 2013

Sunday Reading List: 11/3

7:45 AM Posted by Tiffany Taft , , ,
Hello, internet people.  Happy Sunday.  I'm sorry about my lack of blogging the past few weeks.  It's been a little crazy, but in a good way, around here.  It's time for another review of some of the latest enlightening healthcare-related news.

The New York Times has a great article about the soaring costs of asthma and allergy medications.  There are a few statistics in this one that might just tick you right off:  The Soaring Cost of a Simple Breath.

A new study finds that healthy people don't need to take vitamin D supplements to help with aging bones.  However, for those who live with autoimmune disorders, vitamin D levels are implicated in their development and symptoms.  So it remains an important discussion point for you and your doctor:  No Sign that Vitamin D Supplements Help Aging Bones.

Ah, Dr. Google.  If you tend to be a worrier, then looking online for medical information may not be the best strategy.  As I've said ad nauseum, the web is a great resource and is chalk full of great information and really really bad information:  Too Much Online Health Info May Worsen Worriers' Anxiety.

If you didn't hear about this one, it stirred up quite a bit of controversy and debate.  A woman outside of Fargo decided she would give notes to kids she deemed "modestly overweight" in lieu of candy on Halloween.  As a psychologist, I know that this type of shame-until-they-change-their-behavior approach doesn't work.  While I appreciate her concerns about childhood obesity, which has tripled in children and adolescents in the last 3 decades, her approach is misguided and kinda mean.  Woman to Give Obese Children Letters, No Candy.

Excuse my French.

Happy Sunday!

Dr. T

Thursday, October 17, 2013

Illness and Spirituality

2:39 PM Posted by Stephanie Horgan , ,

Spirituality is a topic that I have a strong interest in, but one I want to tread lightly on, as this is a highly sensitive topic. Religion can be polarizing, similar to politics, so in honor of the government drama going on, I will dip my toe ever-so-slightly into this topic, and may dive deeper in the future. To start off, here is an image from one of my favorite holiday gifts a while back, entitled "Nuns Having Fun." There's something to be said about not taking yourself too seriously, no matter what religious beliefs you have. 

What brought my attention to this was reading the most recent Caring for Crohn's blog entry entitled, "Losing My Religion." It brought up this wonderful intersection of religion and chronic illness. Any illness brings with it challenges, often lifelong, that have a major impact on a person's quality of life. With physical illness, the unpredictability and stigma of the disease can produce mistrust for the patient, not only of his/her own body, but of a higher power that would allow such illness to occur. Integrating personal suffering into a religious worldview can be a challenging task, and one that ebbs and flows throughout life. For as many people that turn toward religion when life gets tough, there may be just as many that turn away. This is why I am careful to at least touch on this topic in my sessions with a patient, but do so in a gentle manner, as there can be many deep emotions around a person's faith. 

I came across a study about chronic pain patients which looked at the relationship between religion/spirituality and physical health, mental health, and pain. The researchers found that "private religious practice (e.g. prayer, meditation, consumption of religious media) was inversely related to physical health outcomes, indicating that those who were experiencing worse physical health were more likely to engage in private religious activities, perhaps as a way to cope with their poor health." I can attest in my own life that the worse my health gets, the more I need to rely not only on other people, but faith. When times are good and illness is in remission, there many not be as much of a pull towards seeking a higher power. The study also found that "forgiveness, daily spiritual experiences, religious support, and self-rankings of religious support, and self-rankings of religious/spiritual intensity significantly predicted mental health status." This doesn't necessarily mean that if you are not spiritual, that you will have worse mental health, but it does show that some of the spiritual principles mentioned above may improve a person's mindset. 

Its well known that religion and spirituality can be a very helpful coping mechanism in the face of suffering with a chronic illness. I see many of my oncology patients talk about their relationship with a higher power and see the comfort it brings them as they go through treatment. There is also much research on Mindfulness and Quality of Life, which although meditation not necessarily associated with any one religion, it has often been paired with Buddhism or New Age theories. I recommend checking out Mindfulness programs, sometimes called MBSR (Mindfulness Based Stress Reduction), in your area if you are looking to start a general spiritual practice. Its more of a discipline of learning to be still and in the present moment. I don't know a religion out there that wouldn't advocate for this. I've also seen Mindfulness and Guided Imagery combined with certain religions, as it is truly just a method of connecting to yourself, and can enhance your current spirituality. Mindfulness provides quiet space for stress to dissolve, and gets you in touch with your breath and bodily sensations. Whether it leads to any other spiritual practice or not, its a great way to slow down from the chaos of our culture, and just be. 

To close, I will leave you with some helpful links if you are looking to live more mindfully. Happy zen time! 
Live Mindfully - Try free online links and mp3 downloads
UCLA Mindful Awareness Research CenterFree online meditations through the web or iTunes

Sunday, October 6, 2013

Affordable Care Act

3:17 PM Posted by Tiffany Taft , , ,
Greetings.  I'm here to talk about the government shutdown.  Ha, just kidding.

Who knew how powerful Mr. White really was?
We're 5 days into the implementation of the Affordable Care Act (aka "Obamacare") and, political ideologies aside - really really far aside - I wanted to go over some of the important parts of this law for people living with a chronic illness.  You know, in case you're like me and didn't have time to read all 2,000 pages; I've reviewed several reputable sources for this information which hopefully will summarize some of the key points.  I'll leave the arguing of the merits or abominations of this law to the pundits, politicians, and anyone else who likes to debate social issues.

Pre-existing condition clauses are a thing of the past.  Under the ACA, insurance companies can no longer exclude a person from coverage due to a chronic condition.  In addition to this, they're supposed to offer affordable plans and not increase premiums if you have a chronic illness that may require expensive treatments.  This may be, in my opinion, the most important aspect of ACA for the chronic illness community.

Prevention of "insurance gaps."  According to a 2011 survey, 25% of adults between the ages of 19 and 64 experienced some time without health insurance, most likely the result of changes of employment status.  70% of those with a gap in coverage had it for at least 1 year.  That's a long time to go without insurance if you have a chronic condition.  Those who tried to buy their own insurance often reported trouble finding something they could afford, and most had trouble doing a worthwhile comparison of the available plans.  Under the ACA, insurance exchanges will provide a viable alternative should a person need it if they lose their employer-based health insurance.  Health insurance is critical for those with chronic illness, and often people will stay with unpleasant jobs because they need their insurance and fear no viable alternative.

Continuity of care.  Related to insurance gaps, jumping between insurance carriers can lead to your go-to physician who's been managing your condition to go from in-network to out-of-network which results in interruptions in care.  Being able to avoid losing these critical physician-patient relationships solely because of a change in insurance plan is a big plus.

Emphasis on integrated care.  You probably haven't heard much about "Patient Centered Medical Homes."  When I first read about this concept, I thought they were talking about nursing homes.  Nope.  This is a new(ish) integrated model for primary care that the ACA advances to possibly be the new way of doing things in medicine. The basic gist is to have your primary-care physician head up a team of medical professionals who facilitate care for you and a group of patients that they're assigned to.  They not only look at your health, but the health of a group as a whole.  The emphasis is on self-care and self-management.  Under this model, there should be much-improved access to care with same-day appointments, proactive tracking of your condition(s), and integrated electronic health records to make sure nothing falls through the cracks and the sickest patients get the most attention.  Sounds nice, doesn't it?  The jury is still out if medical homes really do what they say in terms of improving care and cutting costs.  But it seems they are here to stay.  It does seem to be a reversal of the super-specialization in medicine that's been popular over the past few decades.  If you have more than one chronic illness, you understand how frustrating this disjointed "I only treat a certain part of your body" approach can be.  I've seen clients who have been to 6 specialists for various problems and while each one gave the person a diagnosis, none of them actually talked to each other.  Even within the same health system with the same health records.  So I'm hopeful about this shift.

Those are some of the highlights of the ACA and how it may impact people living with a chronic illness.  Love it or hate it, there are some changes in this law that should have significant impacts.  Like everything else, we'll have to see how things shake out.

Dr. T

Sunday, September 29, 2013

Girls with Guts Retreat

8:07 PM Posted by Stephanie Horgan , ,
This weekend I was honored to be able to speak at the first ever Girls with Guts retreat in Michigan. I found out about this organization through a good friend Jackie Zimmerman, who was a counselor at Camp Oasis, and who is the president and founder of the organization.

At the retreat, it was an opportunity for about 40 women across the country to come together as an IBD (Inflammatory Bowel Disease) family. Whether you had Crohn's, ulcerative colitis, or an ostomy, there was a common understanding that we all have been through a crazy rollercoaster of a journey, and we can learn from each other. There is something freeing and normalizing about being in a room full of women with a similar illness. I don't think I've ever talked so much about my illness and health for such a concentrated amount of time. I learn a lot and am thrilled to be connected with even more women who have been through similar experiences. There was a phenomenal anthropologist who was at the retreat, running focus groups about IBD and the illness experience. Through her groups, we were able to put words to our journeys and talk candidly about what we've been through. I could write so much more, but alas, sleep is important, and so I will leave you with a quote from my presentation that I gave at the retreat.

This weekend marked a powerful gathering of stories. Stories that inspired others, stories that came alongside each other to offer encouragement, camaraderie, and humor. I plan to continue to get to share my story and offer hope to others who have chronic illnesses, and I encourage you to do the same. When we know we are not alone, and have a strong support system, we can live a more whole life and show the world just how strong we are.

Tuesday, September 24, 2013

To Everything There is a Season

Fall has arrived here in Chicagoland.  Time for pumpkins on porches and pumpkin spiced lattes, brisk morning walks with the dogs, and evenings around the fire pit.  I really love this time of year - the only downside being that on its heels is a Chicago winter.

In my own experience and talking with people with chronic conditions, many notice a seasonal component to flare ups and remission.  Spring was a time early on in my Crohn's tenure that was a bit more tumultuous.  I'd also have a lot more seasonal allergies, and I wondered if these were somehow related.  Interestingly, now that my illness is in remission I no longer have those allergies.  I don't know why, but I'm just gonna roll with it.

So what does the science say about the seasons and chronic conditions?

Vitamin D levels are related to Ulcerative Colitis activity.  Not exactly a study on seasons, but obviously we get a lot less sun exposure in the winter months.  A 2013 study reports that 68% of people in the "deficient" group had active UC symptoms, compared to 33% in the "sufficient" group.  It's not really understood why this happens, but there is a relationship.  In China, UC flares tend to be more common in the spring and summer months.  A side effect of lower Vitamin D from the winter?

Being born in the Fall increases your chances of food allergies.  If you're Caucasian and are born in around this time of year, you're almost 2.5 times more likely to have food allergies than someone born in a different season.  Why?  Again, we know the relationship exists but the reason is elusive.  But, like Ulcerative Colitis, Vitamin D deficiency is implicated.  For people with eczema, this condition may enhance low vitamin D risk and is a potential reason why these 2 conditions often appear together.

Your Rheumatoid Arthritis is less likely to bother you in the Fall.  Good news, RA people.  This time of year tends to lead to less symptoms, according to a 2007 study.  They looked at disease activity trends in over 1600 people with RA and found that patients are more likely to report greater RA symptoms in the spring compared to the fall, and laboratory tests tend to back up patient reports.  Interestingly, the patient's physician tended to rate RA activity the same throughout the year and not notice these seasonal changes.

A May birthday is associated with increased risk for Multiple Sclerosis.  Ok, these researchers got really specific and looked at 42,000 people across several countries by month for the lowest and highest risks for developing MS.  People born in May (in the Northern Hemisphere) were 19% more likely to have MS than those born in November.  In general, people born between March and June had higher MS rates.  Why?  One possibility is lower vitamin D levels in pregnant women during the winter months in these regions.

Crohn's Disease is more likely to show up in the spring/summer.  Funny, I was diagnosed in May.  One study in 2006 found that people are more likely to be diagnosed with Crohn's disease in the spring to summer months.  Similar trends were found for UC, but weren't statistically significant.  Why might this be?  One explanation given are seasonal changes in how the immune system works.  Shorter days in the winter seem to enhance immune system functioning, but winter can also be a stressful time (not just because of the holidays).  It's not entirely clear how these changes might bring on IBD, but it seems like a risk factor.  Other possible reasons might be increased illness in the winter months and use of antibiotics, which are considered another risk factor for IBD development. Flu shots don't seem to be a trigger.

Being born in the Spring increases the odds of having Type 1 diabetes.  Are we noticing a trend here?  This study looked at regions in the United States, and found that people who live up north and have T1D are more likely to be born between April and July, and those born in the fall are less likely to have it.  Vitamin D levels are discussed again as a possible cause.

The takeaway message here is that there are two seasonal components to chronic illnesses that are caused by a haywire immune system (technical term):  the season you were born may have influenced you getting the illness in the first place, and now that it's here the seasons may influence when you feel sick and when you feel well.  Vitamin D seems to be the main focus of these studies.  This is not to say if you have a chronic autoimmune condition you should load up on Vitamin D.  You can take too much and develop toxicity.  But, it is important to monitor your vitamin D levels as part of your routine care, if you're not already.  Talk more with your doctor about this.

Dr. T

Sunday, September 15, 2013

Leaving a legacy

7:11 PM Posted by Stephanie Horgan , ,
What would you do differently if you were diagnosed with a terminal illness? Would you change anything about your life? Are there relationships you would invest more in? Or risks you would take? These are questions that many of my cancer patients struggle to answer, as they oftentimes are unable to make it through grueling treatments and the course of their disease. Over the past four years, I have seen many of my beloved patients come and go, some leaving the world behind, some re-entering it as "survivors." The most powerful encounters for me have been when people are approaching death, but have the boldness to talk about it. It gives me chills to get to have intense, meaningful conversations with people that are reflecting on the true meaning of life and what kind of legacy they want to leave. 

I came across an article in Huffington Post this week that some of you may have read as it went viral on the Internet. It was an obituary, but not just any obituary. It was one that was written ahead of time, by a Seattle author, Jane Catherine Lotter, with a great sense of humor. She was actually a humor columnist in a newspaper and was diagnosed in January 2010 with endometrial cancer. She struggled through treatment and unfortunately the cancer recurred and was terminal. She starts out her obituary with a generous dose of her sharp wit, which I loved. "One of the few advantages of dying from Grade 3, Stage IIIC endometrial cancer, recurrent and metastasized to the liver and abdomen, is that you have time to write your own obituary. (The other advantages are no longer bothering with sunscreen and no longer worrying about your cholesterol.)" This is a woman that is boldly owning her diagnosis, and not walking on eggshells. Very few are this bold and it is unarming and refreshing when I come across a person who can talk about their own impending death. As Jane spends time thanking the various people in her life, she gives a special shout-out to her social worker who encouraged her to join a support group for endometrial cancer. This was so encouraging to me, as oftentimes patients underestimate the power of being known by someone in the same boat as them. From what I have seen, support groups are the most underutilized resource that patients miss when they go through a terminal illness. 

My favorite quote from her obituary was the line, "may you always remember that obstacles in the path are not obstacles, they ARE the path." What a solid worldview that is passing onto to her children and other loved ones that knew her. Instead of asking "why me? I am only 60 and too young for this!", she is at peace with her path. A path that includes cancer, and one that ends in acceptance and honesty. She bravely states, "I was given the gift of life, and now I have to give it back. This is hard." Her authenticity is striking and something that will continue to challenge me as I return to work with my patients day after day. What an example for us all. 

So I turn to you as readers- what would you want to write in your obituary? How would you sum up your life in a matter of paragraphs? You may not be dealing with a terminal illness, but I challenge you (and myself) to continue to get clear about the priorities in your life and to go after those. What kind of legacy will you leave behind? 

Tuesday, September 10, 2013

Workplace What The...?

7:03 AM Posted by Tiffany Taft , ,
Greetings.  It's Invisible Chronic Illness Awareness Week!  I was thinking about a topic to write about when I came across an article about a woman who worked as an editor for Patch (owned by AOL) and some completely incredulous actions taken by her boss in response to her chronic illness and, later, her pregnancy.

Have a seat, this stuff is insane.

"...every time plaintiff showed signs of suffering from her illness, her supervisor would get visibly upset or sigh dramatically and suggest that her job was at risk if she could not overcome her chronic/incurable illness more quickly"

The woman in the story has Crohn's disease, but really she could be living with any chronic condition.  Workplace issues are common for those with chronic illness.  Who to tell, how much to disclose, under what circumstances are just a few questions that make up what can feel like a minefield to navigate.  I wish I could tell people that supervisors, co-workers, or even human resources will all be understanding about things, but more often than it should people have similar negative experiences as to the one in this story.

I think that managing chronic illness in the workplace is an incredibly tricky topic. Many of my clients bring up a problem with a co-worker or a boss being less than understanding.  Sometimes they have actual examples of what equates to discrimination while others are very worried about what people may be thinking about them because they need to take time off or go home early because they don't feel well.  Underhanded comments may be made without any direct confrontation.

Back to the woman in the story.  Even though her doctor had told her to stop working, she returned due to pressure from her boss:

"Although she was still sick, she returned to full-time work Jan. 17, 2011, but within days, her bosses rebuffed her complaints of fatigue, telling her she should "keep plugging along" and "continue to 'pump out as much content as the other editors' "

How many times does this happen?   It may be pressure from a boss or from lack of sick time or not getting paid at all if you're not at work.  This plight isn't reserved just for people with chronic illness - it seems like we have a major problem in the US with paid time off and unreasonable expectations so that so many of us go in even if we have a steady stream of influenza coming from our nose (but that's a whole other topic).  But for people with a chronic illness that isn't gone in 2 weeks like the flu is, the decision to take time off versus "sucking it up" and going in come much more frequently.

The woman in the story became pregnant during her time at the Patch, and because of the stress and disease flare-up she was experiencing, her doctor deemed her pregnancy high risk and told her to go the Mayo Clinic:

"when she told her boss, 'his response was that he did not agree with her doctors, that there were plenty of good doctors in the Twin Cities, and that there was no need for her to go to Mayo.'"

Ah, the armchair physician syndrome.  I mean, how complicated can Crohn's Disease (or any other chronic condition) be?  It's like because it's chronic, the severity fades over time in people's minds.  There's no way it can be that bad for that long.  I've read Dr. Google, so I know.

A really smart guy at Harvard has come up with the concept of the Psychological Immune System.  Much like our biological immune system that protects us from infections, the purpose of this system is to protect people from experiencing too much negative emotion for too long.  In general, this immune system is a really good thing.  It helps us bounce back from negative events, even serious traumas, and forge ahead.  But, it also comes with biases that can change what is meant to be a positive thing and turn it into discriminatory thoughts and behaviors.  In other words, we're all programmed to have bad things fade over time, including hearing about someone having a chronic illness.  Unfortunately the illness remains even after people have moved along with the help of their psychological immune system.  Throw in a lack of empathy and other personality traits and you end up with the boss at the Patch.

So what can we do?  Check back with us in the next few weeks when I write about how to deal with these pressures in the workplace and what rights people with chronic conditions have, and don't have.

Dr. T

Wednesday, September 4, 2013

Book Report

2:52 PM Posted by Stephanie Horgan , , , ,
In honor of all the kids going back to school this week, I wanted to do my own book review as I found this book at the library a while back and wanted to share it with you all.

Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving

I recently read this book which is published by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. It was very informative and I'd like to recommend it to patients and parents.

It is written and edited by medical professionals who want to be more educated on their child's condition. It begins by defining the various conditions that make up IBD (Crohn's, ulcerative colitis, and indeterminate colitis) and talking about the possible epidemiology of IBD.  The second part of the book touches on diagnosing IBD and goes into the symptoms a child may exhibit. There is a very helpful chapter (5), entitled How to Prepare for a Visit to your Child's IBD Doctor. It gives a comprehensive list of topics to discuss with your child before the visit so that everyone is on the same page and that you have a list of questions that you want to ask together. Another tip provided was not to promise your child there will be no blood tests, as this may not always be the case.

Is any family truly this happy? 

There is a section that talks about the importance of talking about the child's diagnosis as a family, and including siblings at an appropriate age. This can make the child with IBD feel more understood by the other family members and opens the family communication. Siblings want to know if it is contagious, if it is fatal, and how will this change the family dynamic. Siblings are often the ones who have the most questions but are afraid to ask, and may have frustration over receiving less attention, so parents should spend one-on-one time with each child. Also, all children, including the child with IBD, need to have the same rules and consequences so that there is no favoritism. 

If I eat the veggies, I may have a stomachache, but aren't I supposed to eat my veggies? 

An interesting statistic the book quotes is that "children with IBD symptoms eat only about half the calories they require for their age. Children and teens with IBD need 20-40% more energy than children who do not have IBD." It can be helpful to talk with a nutritionist who specializes in IBD to make sure the child's nutrional needs are being met either with food or supplements. It can be hard for kids who have dietary restrictions due to their disease to find a variety of foods that will give them the nutrients they need.

Last but not least, the family dynamic is upset when a child suffers from a chronic illness. Parents need to have supports in place in order to manage their own anxiety about their child's condition and their child's future. At each developmental level, the child may react differently to his condition and to the other family members, and the book goes through various life stages in Chapter 15.  There are many stressful transitions for kids, including middle school, high school, going from a pediatric doctor to an adult gastroenteroligist etc. These transitions should be handled with care, and much communication about expectations and who will do what task. Ultimately, the goal is for the teenager to be successfully transitioned and take ownership of his or her IBD. So overall, this book is a great resource for a newly diagnosed child with IBD and is pretty up-to-date since it was published in 2010. Doctors from three renowned IBD pediatric centers were the editors so I found it to be very accurate, yet patient-friendly. Hope you make time to give it a read!

Monday, September 2, 2013

Stress Science

3:29 PM Posted by Tiffany Taft , ,
Ah, stress.  We Americans are a stressed society, aren't we?  I personally avoid watching any sort of TV news and stick with online sources as to limit my exposure to the insanity of the world to controlled doses.  Needless to say it's not surprising that researchers have spent, and continue to spend, a considerable amount of time and money understanding the good, the bad, and the ugly of stress.  Here are some recent findings that I thought would be of interest to our readers - because living with a chronic illness not only adds a layer of stress to life but simultaneously increases our susceptibility to sickness (e.g. flare ups of said illness) during periods of stress.

On with the science!
First up, researchers at Princeton University found that mice who exercised regularly showed improved neurological response to stressors.  Specifically, proteins that get released in a part of our brain called the ventral hippocampus and are implicated in increasing anxiety showed up less in the mice who exercised compared to those who were sedentary.  As an added bonus, exercise put the brakes on circuitry in the brain that leads to feeling anxious giving the negative effects of stress a double-smackdown.

Takeaway:  regular workouts can make you more resilient under stress at the neurological level.

Don't worry, you're getting somewhere.

Next, a study from the University of Southern California showed that when stressed, we're more likely to stick to old habits - both good and bad.  People who, in general, had poorer eating or exercise habits tended to continue to eat poorly and be sedentary during stressful times (e.g. people who ate donuts for breakfast ate even more junk food while watching a lot more TV) while people who were healthier upped the healthy  habits under stress (e.g. worked out more).

Takeaway:  establish healthy habits now, especially during lower stress periods, so when the heat is on you're more likely to go the healthy route.

Finally, our friends across the pond in the UK, France and Finland followed over 7,000 people for 18+ years after they answered a series of questions about what things they believed most severely affected their health; the things people rated included smoking, drinking alcohol, diet, exercise habits, and stress.  Those who rated that their health had been affected "a lot" or "extremely" by stress had more than 2 times the risk of having a heart attack or dying from one than those who said stress did not affect their health.

Takeaway:   Listen to your gut and pay attention to how you think about stress, including how it may be affecting your health.  Not everyone perceives it the same way, but if you think its bad - it probably is.

Channel your inner Yoda.
So, how's your stress lately?  Keep in mind that it's the chronic day-to-day hassles that can have the most wear and tear on our bodies, not the big life events.  We don't have to feel like we're at the end of our rope, or are a pot about to boil over, to be experiencing stress.  If you are stressed, what are you doing to help?  Are there some changes you can make to help you cope?

Dr. T.

Tuesday, August 27, 2013

Food Allergy in the Spotlight

9:09 AM Posted by Tiffany Taft , ,
Food allergies.  They seem to be everywhere, lately.  We hear most about peanut allergies, but we humans can be allergic to pretty much any food.   Some foods are more likely to cause allergies, which are often referred to as the "Top 8":  Dairy, Eggs, Soy, Wheat/Gluten, Peanuts, Tree Nuts, Fish, and Shellfish.  Food allergies are on the rise in the US, but the answer to the logical question "Why?" remains elusive.  One raging debate is about how we produce food in this country, en masse, to feed the masses quickly and cheaply.  Another, related debate, is the use of genetically modified crops (GMOs) that go along with the more potent pesticides, herbicides, and fungicides we use to minimize crop losses.  I'm not going to get into all of that today.  Rather, talk a bit about the social and psychological impact of food allergies.

But first, announcements!

The Discovery Channel will air a documentary, “An Emerging Epidemic: Food Allergies in America,” on Saturday September 7 at 8 a.m. ET/PT and September 21 at 8 a.m. ET/PT. The organization Food Allergy Research & Education (FARE) teamed up with the Discovery Channel to explore what it's like to live with food allergies, awareness campaigns, and current research into food allergy treatments.  Even if you don't have food allergies, or have a friend or family member with them, I think it'd be a good idea to check this out because the odds that you'll encounter someone with food allergies in your lifetime are pretty high.  According to FARE, 1 in 13 kids have a food allergy and an estimated 15 million people in the US are affected.

Several months ago, I wrote a guest post for a great blog It's an Itchy Little World where I touched on some of the struggles parents of kids with food allergies face.  For example, 41% report significant caregiver stress, 49% state that food allergy reduces the family’s social activities, and 34% report reduced school attendance. In my research on this topic, I came across Food Allergy Fun, a blog with cartoons that depict stigma and, well, some of the dumb things people say to people with food allergies.  Here are a few of my favorites, if favorites is the right term for something like this.

Wait, you still have this?  Many people have a hard time wrapping their brains around chronic illness, including food allergies.  There are many theories as to why this is the case, and individual differences exist, but I would say about 95.87% of people I see report something along the lines of this:

Blame, either from the self or others.  Patients, or parents of kid-patients, may ask what they did (or didn't do) to bring on food allergies.  It doesn't help that many people seem to be experts on the subject, especially with such easy access to Dr. Google:

Yeah, well I have this.  I believe that most people mean well, and try to relate to what people living with food allergies are going through.  But comparisons can make people feel unheard and that their situation is being minimized.  I call this empathy gone wrong:

These are just a few examples of what life with food allergies can be like. I'm looking forward to seeing how the Discovery documentary addresses some of these issues and helps turn our attention away from Miley.

Dr. T