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

Tuesday, February 26, 2013

Chronic Illnesses and Dating

7:31 PM Posted by Stephanie Horgan , ,


One of the biggest questions that comes up time and time again when patients talk about dating with a chronic illness is, "When and how do I tell my significant other about my condition?" The simple answer, is that there is no simple answer. A lot depends on disease severity, and how much symptoms interfere with your life. It also depends on how comfortable you are talking about your illness, as once you mention it, your partner will most likely have questions. It can be helpful to have either written information or websites you think it would be helpful to look at ready, so that the person can get an accurate picture of what life looks like with this illness.

Some patients are so open about their illness, they are advocates and speak out on behalf of others in their community. Some disclose on their social media profiles, or wear cool shirts like these from our friends at the Great Bowel Movement. The most important thing to remember is that each person is different and each relationship if different.



Delivery and timing play key roles in this discussion, as disclosing a health issue can be a significant turning point (good or bad) in a new relationship. Some people find that the earlier they disclose, the earlier they find out the other person's true colors. Others feel more comfortable waiting as they don't want it to "scare someone else off", or they don't want to be defined by their illness. I would personally advise patients to check with their gut, and if they want to share, start small. Sharer's remorse can be especially unsettling, especially at the beginning of a relationship. You can always share more later, but you can't "unshare" something you wish you hadn't disclosed yet. There is a very real stigma still in our culture, around illness, both mental and physical. I advise patients to wait until they have a certain level of trust with the person they are dating and then to continue to communicate about their illness as much that feels right to them. Obviously, sometimes there are situations in the first couple of dates where a person may need to disclose to avoid confusion. For example, some patients have food limitations, need to be near a restroom, get fatigued during physical activity, and these are all things that may need to be communicated and potentially explained as to a partner when they naturally come up.


The good news is that there are plenty of wonderfully happy couples out there who have been through this journey of dating with a chronic illness, and are proof that love can truly trump anything. Ultimately, a chronic illness is a big part of one's life, but only part. In a similar light, illness may be a big part of a couple's journey together but it is only a part. Continue to celebrate the other aspects of your relationship and be creatively accepting as you go on your unique path together.



To close, I will post a few links I found interesting- please let us know if you have others that have been helpful!

Prescription 4 Love- a dating website for people with various conditions, anything from asthma to cancer to diabetes to MS.

Meet an Ostomate- A website for those who have ostomies (temporary or permanent)

Diabetic Date- For those with diabetes looking to date

Dating for Disabled- Online dating website for those with various disabilities

Friday, February 22, 2013

Finalists! (And Go Buy Time Magazine)

11:28 AM Posted by Tiffany Taft , , , ,
We're very excited to announce that we've been selected as finalists for the WEGO Health Activist Silver Stethoscope Award for 2012!  This award is given by the fine folks at WEGO Health to recognize healthcare professionals who utilizes social media, online community, and technology to make the world a better place. 


Honestly, I'm shocked and feel quite humbled for the recognition.  To know that we're reaching people and making a small difference in this big world gives me, as my 1st grade teacher Miss Zurich would say, the warm fuzzies.


A shout out to our fellow finalists with links to their sites/blogs.  Congratulations!

On a completely separate note, as I mentioned in my last blog entry I rely on The Daily Show for most of my news and Jon's guest last night was Steven Brill who wrote a 36 page cover story for Time Magazine about the healthcare industry that every person living with a chronic illness should read.
Read Me.
Here's the episode from last night with the interview, and the link to part of the article on Time's website.

Best,
Dr. T

Saturday, February 16, 2013

Ostomies 101

9:32 PM Posted by Stephanie Horgan , , , ,
Quite a few of our patients with IBD (Inflammatory Bowel Disease) have faced the decision of whether or not to get an ostomy. What is an ostomy, you ask? It is a surgical procedure where the end of part of the intestine is brought out to the stomach surface, and then stool is diverted into an external bag that adheres to the stomach's surface. Amazing that our bodies can do that, right? These can be temporary or permanent, depending on the needs of the patient.
Gotta have a sense of humor...
Often times, an ostomy is an option that is used when medicines have failed, surgeries are not working, and quality of life needs to be restored. And quality of life is the whole point, right?! So if you are considering ostomy surgery, reach out! The best thing you can do is to talk to other people who have been through it. The concept can sound scary and foreign at first, but once you meet people who have chosen to have an ostomy, you may have a different opinion. To end, here are some categories of organizations who are great to reach out to:

 
Information



Find cool products and clothing
I also have heard maternity pants for ladies are lifesavers! 

Get support
Awestomy- check out their amazing blog post all about creating an ostomy support network! 



Find love



Get financial assistance
 (from CCFA's website)
The Ostomy Group: www.ostogroup.org
Friends of Ostomates Worldwide: www.fowusa.org
United Ostomy Associations of America, Inc (UOAA): www.uoaa.org
Convatec- Access Program: P: 800-979-8716
Hollister: www.hollister.com

Wednesday, February 13, 2013

The Psychology of Good Deeds

7:45 AM Posted by Tiffany Taft ,
I really don't like watching the news.  Or reading the news.  Full disclosure:  My main sources of news are The Daily Show and Colbert Report.  The humor takes the edge off of things.  It seems like all that we hear about lately is the latest shooting, cases of child abuse, our soldiers committing suicide.  It feels like the country's discourse has deteriorated beyond repair sometimes, as the media portrays us as this deeply divided populace of us-versus-them.  It can all feel very daunting, and dark.

Then I tap into the nerd center of my brain and remember the bell curve.  I'm sure you've seen this thing before

You know you love it.
For those of you who don't share my enthusiasm for statistics, you want to focus on the percentages on the graph.  According to the bell curve, most people will fall somewhere in the middle (in the blue area), with almost everyone else showing up in the next section (the red area).  The middle line represents the mean, or average.  95.4% of us will fall relatively close to "average" no matter what we're talking about.  The yellow areas are the outliers, the extremes.  I tend to believe that it is these 2 areas of the graph who are driving the national debate.  These are the people who we pay attention to.  We don't really give much thought to average.  Or a little above or below average.  But those people who are "out there," whether in a good way or not so good way, capture our collective attention.

I'm getting to my point, which isn't population statistics.

I came across an article on the psychology of good deeds.  "Paying it Forward" if you will.  The 2005 study in the Journal of Personality and Social Psychology found that people who did 5 random acts of kindness per week were happier than people who didn't.  They experienced a "moral elevation" which makes us want to do more good deeds in order to continue with those warm fuzzy feelings.

Image from the movie"Pay It Forward."  What happened to that kid, anyway?
Contrary to what the news may imply, I don't think Americans are as divided or vitriolic as we're portrayed.  Rather, people are out doing good deeds every day.  It just doesn't make the news.

A prime example of this are the parents of Jayden Lamb.  Jayden was 9 years old when he passed away from cancer of the brain and spine. His parents created a Facebook page in his honor with the message to "Pay it Forward, Jayden Style."  As of today, Jayden's page has almost 40,000 Likes.  Their feed is full of stories of random acts of kindness from people all over the world.  What is a devastating loss has been turned into a movement that not only improves our society, but our mental well-being too.

Go on over and check it out.  I hope you can find a way to Pay it Forward this week.

Best,
Dr. T

Friday, February 8, 2013

Let's Talk About Sex...and Chronic Illness

9:14 PM Posted by Stephanie Horgan , ,
I decided to broach a hot topic in today’s culture…sex. It’s a topic that some people love to talk about flippantly with their friends, but when they are at their doctor’s office, it just doesn't come up. And when you have a chronic illness like an Inflammatory Bowel Disease, you are already having to talk about your embarrassing digestive symptoms, so the odds of you voluntarily bringing up another socially awkward conversation are slim to none. 

I'm writing about this topic as I have recently read two blog entries from our friends over at the Great Bowel Movement.  They boldly asked a sex therapist to write about the issues that come up with IBD and sexuality. I also did some reading on sexuality on the Crohn's and Colitis Foundation of America website and wanted to share what I took away from all of this talk about sex. I also wanted to generalize it to other chronic illnesses, as much of the advice was applicable to other diagnoses.


1) People with chronic illnesses struggle with body image. When your body fails in some way, it affects your self-confidence, self-efficacy, and overall feelings of well-being. There is grief involved when a patient has to accept his/her diagnosis, and therapists are there to help. Whether the illness is invisible or visible, there is a unique journey for each patient to find a way to incorporate his/her new diagnosis into his/her identity in a positive way. 




2) People with chronic illness can have very real sexual side effects from their treatment. Examples of this could be medication that lowers your sperm count, a surgery that lowers your fertility, or symptoms like cramping and fatigue that lower your libido. Read your medication labels, ask your doctors and surgeons about these things! 

3) What are some basic principles that can help? Well, first of all remembering that sex is just one part of life and relationships. Remembering all the other things you love about your partner and developing those areas can be freeing. Also, within sexuality, intercourse is just one of the things that is involved, so couples need to be creative and experiment when dealing with various medical limitations. Communication is vitally important with your partner, as is trust, patience, and a sense of humor. Lastly, if you are struggling, seek help from a therapist. 





To end, I wanted to put in a shameless plug for a friend of ours, who is working on her thesis on Inflammatory Bowel Disease and fertility. If you are between 18 and 45 and are a woman with IBD we'd love if you'd take a few minutes to fill out this survey which will be available until Sunday, February 17th. I'd like to wish everyone a very self-confident and sexy Valentine's day as well. 

Monday, February 4, 2013

Let's Talk About Diet

5:38 AM Posted by Tiffany Taft , ,
We seem to be obsessed with diets in the United States.  Obsessed.  A new fad diet emerges every few months that quickly becomes the greatest, most revolutionary, easiest, quickest way to weight loss you've ever seen!!!  Yet our obesity rates are at epidemic levels, having spread to our youngest citizens, producing a massive public health crisis that will take decades to undo.  But that's a whole other topic, and not what I want to get into today.  Today I want to talk about the role of diet in physical symptoms, which is a question I get asked quite frequently.

What is the relationship between certain foods and chronic medical symptoms?  This is a tricky area that can feel a bit like navigating a mine field.  Many people that I've worked with have identified foods that make their symptoms worse.  For some, it's a few foods that aren't very difficult to cut from their diet; for others, it involves entire classes of foods such as gluten for Celiac disease, dairy for lactose intolerance, or soy for a severe food allergy.  Unfortunately, some people I've seen have cut so many foods from their diet that eating becomes unpleasant, even stressful, and severely limits their social interactions.  Even more unfortunate in these situations is most of the time the severity of the dietary restrictions are unnecessary and they remain symptomatic.

So how does this happen?  There are many things at play, but I want to revisit the fad diet trend that we have for general weight loss as it applies to medical illness.  So I asked The Google and there are hundreds of pages dedicated to "Food Cures" for everything from Autism to GERD to ulcerative colitis.  Do diets work for some people?  YES!  So I don't want to come across as some sort of Negative Nancy here.  But, those who are most successful in using diet to "cure" their chronic medical condition do so by working closely with their medical team which includes a registered dietitian and a health psychologist.  "Diet" not only involves what you eat but how you eat it, so there's a large behavioral piece to all of this.  Unfortunately, integrated care isn't the norm so most people find themselves flying a bit blind and running the risk of restricting foods that they don't need to restrict.

When food is no longer fun.
The term "Food Cure" is a bit of a problem, in my opinion.  It preys on the worries of those who have a chronic condition whose medications may not be working,  or who have a child with a condition that is poorly understood and lacks good treatment.  It makes it sound like "if you just cut out these foods, your symptoms will vanish!"  Sure, not all people are gullible and take that promise at face value.  But it can create a mindset of "maybe it's this food" when the diet doesn't work like it should, leading to a pattern of disordered eating.   Another food is eliminated...and another...and the person ends up like one of my former clients who only ate white foods yet her IBS remained symptomatic.  She felt like a failure on top of being truly obsessed with what she ate, thereby taking no pleasure in eating, and slipping into depression.

So what can you do?  My #1 tip for anyone considering using diet to help with a medical problem is to consult with a registered dietitian.  Unfortunately many insurance companies don't cover this service, but it is worth the money spent to get an informed, expert opinion on how to approach your diet.  If you can't do this, be very systematic and patient.  Keep a food diary with a column for symptoms and eliminate only 1 food at a time.  Wait at least a week before you decide if it was helpful or not.  If you feel like your symptoms have improved, you have to test your hypothesis and reintroduce that food to see if your symptoms come back.  Wait at least a week and eat the food more than once before you decide if it's on the "gotta go" list.  Remove the food again and see if your symptoms improve.  Only then should you decide to eliminate that food from your diet.  This is a very time consuming process, but if done right you're more likely to accurately identify your trigger foods and not erroneously deprive yourself of foods you love.

This is a complicated topic that I'll spend more time on in future posts.  Have you tried a diet to manage your condition?  What has that been like for you?  We'd love to hear your stories.

Best ~ Dr. T