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

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.