Something personal

For the past year and change, I’ve used this forum to educate and demystify medicine, and to introduce myself as a physician to everyone.   Today is a little different.

I have been involved with the Crohn’s and Colitis Foundation of America for the past 5 years. Now I am proud to say my daughter is getting involved too!

She has organized Team EmGo in honor of her Bat Mitzvah/ 13th Birthday for the Take Steps walk to raise money to support research for Crohns Disease and Ulcerative Colitis.  To learn more about her team:

online.ccfa.org/goto/teamemgo

 

Ice Bucket Challenge

For the past month or so we have all seen ice bucket challenge videos of friends, family and celebrities dumping buckets of ice water on their heads, making donations to ALS foundations, and asking others to do the same.  In addition to giving us some good laughs, the campaign has raised over $70 million.  And that is the point.  There are many diseases we don’t have all the answers to, they range the spectrum from infectious, cancerous, autoimmune and idiopathic (a fancy way of saying “we don’t know” and still sound smart.)

For the record, just as the ice bucket challenge was going viral, I was interviewed on the Phoenix NBC affiliate about the health affects of cold water shocks and any health consequences.  Unless you have a predisposition to heart rhythm irregularities it should be a safe activity – just be sure not to fall or have someone drop a heavy bucket of ice on you.

For people diagnosed with a life long illness, lives are altered.  Some diagnoses bring more change than others – depending on how day-to-day life changes come from the diagnosis or treatment.  This emphasizes how important it is to get a diagnosis correct.   The only way to improve the outcome of a diagnosis is through research – for better and earlier diagnostic tests, treatments with better results and less side effects.  Research for clinical treatments is time-consuming and expensive.  There is not enough money available for all the diseases that need more research – leaving many underfunded diseases.  

Most medical research in the US is funded by the National Institutes of Health.  Over $30 billion in grant funding is scheduled for this year.  The competition for funding is fierce and complex.  Most universities have entire departments to help researchers with the process of applying for grants.  Private industry can choose the diseases they invest in, and have improved the lives of millions of people, however, as private businesses they also need to develop products that will be used by many.  It doesn’t make business sense to invest millions of dollars in a product that won’t generate sales to cover the cost of development.

What has filled the gap between highly prevalent diseases and NIH funding are patient organizations.  These groups have, for several decades, brought together people who share a connection to diagnosis, raised awareness and money for research – with direct benefit to those in need.  30 years ago people would whisper the words “Breast Cancer” or “HIV” – today there are huge organizations that have taken these “taboo” diagnoses into the mainstream.  They have raised huge sums of money and affected government policy.  The result: more and better treatments which have resulted in longer, healthier lives for those diagnosed with these conditions.

Many of the non-profits hold events – dinners, fundraising parties and athletic training programs – a personal favorite of mine.  I became involved with the Crohn’s and Colitis Foundation of America in 2010, and joined Team Challenge, their Half Marathon training program.  Together, the NYC team raised over $250,000 and the entire event raised $3.7 million for the CCFA.  For more of my thoughts on exercising for a cause, click here.

Besides the direct money these races or other events raise, there is media attention given to a cause that might not get it otherwise, as well as the stories of the people participating.  Stories of how a diagnosis has affected their life or the life of a loved one, and how being part of an organization dedicated to improving the lives of those affected can bring change.

We can laugh at our videos of cold water drenching (see mine here – Ice Bucket Challenge), cry at some of the stories behind the videos and get annoyed that our Facebook/Twitter/Instagram feeds are being clogged by them, but to those affected by ALS this campaign is life altering, just as the diagnosis of ALS was in the first place.  Just like my work with the CCFA was for me.  Remember, the work done today can mean that the person diagnosed tomorrow has hope and options, not fear and shame.

The path to wellness begins with a proper diagnosis

Inflammatory Bowel Disease – a real pain in the…

December 1-7 was Inflammatory Bowel Disease (IBD) awareness week.  Though I had not launched this blog until after the week was over, those who know me know how important these illnesses are to me and my family.  I have served on the Medical Advisory Committee to the Crohn’s and Colitis Foundation of America (CCFA) both in NYC and Phoenix.  I have run 2 half-marathons (in Las Vegas and Virginia) to raise over $30,000 for the CCFA.  So even though IBD Awareness week has passed, I wanted to acknowledge it and review Crohn’s Disease and Ulcerative Colitis.

IBD is an autoimmune disease – meaning the bodies own defenses get altered and attack the intestines and other parts of the body.  IBD affects 1.4 million adults and children in the U.S.  70,000 people are newly diagnosed each year.  The peak age of onset is between 15-30 years old, and about 10% of patients are under age 18.  There is a genetic predisposition to IBD and it can run in families.  It is not clear what exactly triggers the illness in those predisposed.  Current theories revolve around an environmental trigger or an infectious one, or both.
The main symptoms of IBD are abdominal pain and diarrhea, sometimes with blood.  People with IBD can have more than 10 bowel movements per day.  One can imagine the effect this can have on a child in the early stages of development – especially socially.
The 2 most common diagnoses within IBD are Crohn’s Disease and Ulcerative Colitis (UC).  Once thought to be 2 completely different diseases, we have learned that they share some similar features and some patients have features of both Crohn’s or UC.

 

Ulcerative Colitis has the following features:
  • Diarrhea with mucus and/or blood
  • Spasms in the rectum (called tenesmus)
  • Fevers can happen when severe
  • People can usually maintain their body weight
  • Rarely develop tracts from the intestine to the skin (called fistula)
  • On a colonoscopy there are ulcerations (damage) to the surface layers of the large intestine
  • Inflammation and ulceration in the GI tract are only in the large intestine
  • For years it was thought that patients with UC were at increased risk of colon cancer, but recent studies have questioned this.
  • Eye inflammation can occur (called Iritis and Uveitis)
  • A form of arthritis in the spine, (called Ankylosing Spondylitis)
  • Painful, red skin nodules (called Erythema Nodosum)
Crohn’s Disease has the following features:
  • Diarrhea with a fatty consistency
  • Less spasms in the rectum (tenesmus)
  • Fevers
  • Fistula
  • Weight loss
  • On a colonoscopy there can be injury to any part of the GI tract, from the mouth to the anus, and the injury goes through to the deeper tissue of the intestines
  • Blockages (strictures) in the intestine from inflammation and scar tissue
  • Eye inflammation (Iritis and Uvititis)
  • Arthritis in the spine (Anklylosing Spondylitis)
  • Painful areas of skin breakdown (called Pyoderma Gangrenosum)
Both Crohn’s Disease and Ulcerative Colitis have some other associated symptoms, but they are less common.  In addition, the symptoms are not exclusive, as many people can experience either diseases symptoms as part of their illness.

 

Treatments for Crohn’s and UC include medications that reduce inflammation and balance the immune system, They are considered either non-biologic or biologic.  Examples of non-biologic treatments are anti-inflammatory (ibuprofen, naproxen), immune suppressants (6-MP, azithioprine), antibiotics and corticosteroids (prednisone).  Biologic treatments are injected or given intravenously and block certain parts of the immune system like Tumor Necrosis Factor (TNF).  Recent studies have looked at some alternative therapies like probiotics (bacteria found in certain foods like yogurt), using certain parasites (worms) to stop the immune reactions in the gut and even a “stool transplant” which is exactly what it sounds like!

 

IBD is diagnosed based on a person’s history of symptoms, a physical examination, and blood tests that can show signs of inflammation and certain antibodies that are common in IBD.  Imaging such as MRI or CT scan can be used and directly looking at the colon by a colonoscopy and obtaining biopsies is standard.

 

Why is the diagnosis important?  If the symptoms and treatments overlap, you may wonder why does making the specific diagnosis of Crohn’s Disease or Ulcerative Colitis matter rather than calling it IBD?  The diagnosis matters because certain treatments are more effective in Crohn’s vs UC and vice versa.  Additionally, since there are other symptoms outside the GI tract that are associated with specific forms of IBD, the proper diagnosis helps a doctor make the association that back pain may be due to Ankylosing Spondylitis rather than a muscle strain, or that rash on your leg may be Pyoderma Gangrenosum and not an infection.

How does this affect MY practice?

As an Internist, I will often be the first doctor someone comes to for unanswered symptoms.  So, in someone who has had ongoing symptoms that may be inflammatory bowel disease, I will order the studies that will either confirm or rule it out.  Since a colonoscopy is a necessary test in making the diagnosis, I will also refer people to a gastroenterologist who has expertise in IBD.

I also care for people who have already been diagnosed with IBD.  They also get colds, need general physicals and other everyday health services.  In addition, they often need information about new symptoms they may be experiencing – is it IBD related or something else?  Is it a side effect to their medication?  For them, I am a resource and a sounding board that sees them as a whole person, and not just an IBD diagnosis.

IBD can have multiple, seemingly disconnected symptoms.  In fact, the average time from the first symptoms to diagnosis is 2-3 years!  When the pieces are put together properly, the puzzle can be put together and reveal a diagnosis.  Knowing where you are starting from frames the conversations you have with your doctor, and help you tell your story and ask the questions you need answered to be an active participant in your healthcare.  Too often people with chronic illnesses are made to feel powerless, that health is beyond their reach and control.  In an illness that is painful, socially awkward and lifelong, information is power and can give a person a sense of control and direction.

 

The path to Wellness begins with a proper Diagnosis.
Helpful links:
Crohn’s and Colitis Foundation of America – www.ccfa.org
Center for Disease Control – IBD site – www.cdc.gov/ibd
My daughter’s video documentary of the 2010 Las Vegas Half Marathon to benefit the CCFA  –  http://youtu.be/F-1Qkoenv1E