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.