CCFA Patient and Family Education Conference

CCFA Patient Education ConferenceYesterday1 I attended CCFA Illinois’ 17th Annual Patient and Family Education Conference. This year’s conference featured a number of great speakers from the U.S. and Canada, and focused on many of the current hot topics in Inflammatory Bowel Disease (IBD). Below are links to the speaker presentations, as well as my tweets related to each speaker (drawn from live tweeting done during the conference).

Thanks to CCFA and the many speakers and conference volunteers for putting together an extremely educational and informative event! 

“What is IBD, and How Did I Get It?” — Gilaad G. Kaplan, MD, MPH, University of Calgary (9:00–9:30 AM)

Presentation (PDF format)

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
In 2012, individuals should be empowered and have control over their IBD, not vice versa. — #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Dr Gil Kaplan — GI from Calgary — offering an overview of what IBD is (and why people are at risk to get it). #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
IBD is a chronic & potentially debilitating disease of the young that results in a significant burden 2 the patient & healthcare sys” #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Crohn’s and ulcerative colitis (UC) probably not just two diseases, but many different diseases. Not just bowel disease, but multisystem diseases. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Causes of IBD: Genetics and environment interact. Over 100 genes associated with susceptibility to Crohn’s or UC. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Genetics is not enough to account for occurrences of Crohn’s. Interestingly Crohn’s seems to be a modern disease (since 1932?) #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Majority of studies show #crohns and UC incidence increasing through time. Seems 2 correlate 2 when a country becomes industrialized. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Smoking increases risk of #crohns, while quitting smoking increases risk of ulcerative colitis (UC). #CCFA #counterintuitive

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Dr Kaplan and others looking at novel environmental triggers for #crohns and UC, such as garbage and air pollution. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
For example, seems to be a relation between high CO2 and #crohns diagnoses. Also seeming relation between air pollution and flares. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Today’s #crohns treatments mainly address the inflammation response, but not the underlying disease causes. #CCFA

“Understanding the Risk of Current IBD Therapies and Preventing Complications of Medications in the Treatment of IBD — Millie Long, MD, MPH, University of North Carolina (9:30–9:55 AM)

Presentation (PDF Format)

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Dr Millie Long — from U of NC — now discussing risks of IBD therapies (and how to prevent complications). #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Osteoporosis rate about 15% among IBD patients — preventative measures: exercise, quit smoking, Vit D supplements. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Cervical cancer rate increases in women w/ IBD. Pap smears are secondary preventative measure; now primary is HPV vaccine #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Increased colon cancer risk for IBD patients, while intestinal cancers are actually decreased. Treating the IBD is primary prevention. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Tuberculosis risk increases with anti-TNF meds. Screen for TB prior to starting such meds. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Risk of Herpes Zoster increased 20% for #crohns, 60% for UC. #ccfa

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Live vaccines should be avoided in patients w/ immunosuppression. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Medication Azathioprine increases risk of skin cancer. Use sun screen and sun protective clothing for prevention. #CCFA #crohns

“What Should I Eat? The Role of a Healthy Diet in the Management of IBD — Bethany M. Doerfler, RD, LDN, MS, Northwestern Memorial Hospital (9:55–10:20 AM)

Presentation (PDF Format)

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Bethany Doerfler now discussing the role of a healthy diet in IBD #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
There are lots of ways to eat a healthy diet. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
New guidelines for Americans highlight fruits and veggies, which can be a challenge w/ IBD. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Recent research into the risk of #crohns and UC shows value in limiting beef and processed meats, saturated fats, alcohol #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Selective Carbohydrate Diet (SCD) is one option many people w/ IBD are trying. Important not to get stuck in first stage. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Final phase of SCD can be difficult with IBD, given its focus on fruits, veggies and nuts. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
At this time, there is no research showing link between SCD and reduction of disease flares. But may be effective in symptom mgmt. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Using diet to decrease intestinal bloating can be effective: FODMAPS hypothesis. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Limiting lactose and high fructose fruits (and soda) seems to offer biggest bang for the buck. Eat real foods! #CCFA #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Sugar (and the role of sugar) is getting a lot of attention today in the IBD world. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Current advice: In the midst of a flare, limit lactose, unhealthy fats, carbs and high fiber. #CCFA #crohns

“Gender Issues in IBD: A Discussion on Sexuality, Pregnancy, and Fertility for Men and Women with IBD — Sunanda Kane, MD, MSPH, Mayo Clinic (10:20–10:45 AM)

Presentation (PDF Format)

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Now speaking: Dr Sunanda Kane from Mayo Clinic on Gender Issues in IBD (sexuality, pregnancy and fertility) #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
IBD: No difference in rates of sexual activity (w/non-IBD people); yet only 35% of patients will discuss questions w/ doctor. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Women w/ #crohns who smoke have far more problems than men w/ #crohns who smoke. (significant gender difference) #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Woman w/ IBD have normal fertility rates. J-pouch and active #crohns seem to impact female fertility. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Sulfasalazine significantly reduces male fertility (almost a birth control). #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Chance of a child developing IBD: If 1 parent has IBD = 3–7%; If both parents have IBD = 33–50%.

21 Apr 2012 Kevin A. Barnes @KevinABarnes
IBD Meds to be a avoided during pregnancy: Methotrexate, Thalidomide #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
IBD Meds to be a avoided during breastfeeding: methotrexate, metronidazole, ciprofloxacin, cyclosporine #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Old study linking birth defects to father’s use of 6-MP and Azathioprine has been disproven multiple times. It is NOT true. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
There appears to be a relationship between time in the menstrual cycle and IBD disease activity. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Remicade and Humara do cross the placenta, so a mother taking those will pass them on to baby. #crohns #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
A woman should have been off of steroids and healthy for three months before trying to get pregnant. #CCFA #crohns

“What’s Next for Treatment? Emerging Therapies for IBD, and Can Responders Ever Stop Their Meds?” — Stephen Hanauer, MD, University of Chicago Medical Center (11:15–11:45 AM)

No Presentation Available

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Dr Stephen Hanauer from U of Chicago Med Center now talking about emerging IBD therapies. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Disease-specific humor from Dr Hanauer about “IBD runs” #CCFA #crohns #groan

21 Apr 2012 Kevin A. Barnes @KevinABarnes
We’re not at the cure, but we’re at an exciting point for reducing the “bad outcomes” associated w/ #crohns and ulcerative colitis. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Evolving goals of IBD therapy: not merely controlling symptoms, but inducing remission (& move toward deeper remissions). #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
IBD treatment depends on 1) severity of symptoms, and 2) what has worked for you in the past. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Steroids the best & the worst for IBD. Most effective in reducing symptoms and inducing remission, but have most/worst side effects. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
We don’t stop medicines for high blood pressure when the BP is controlled. Same applies to IBD meds. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
At U of Chicago alone, 20 different IBD clinic trials investigating new meds. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Next new IBD meds likely to reach market in 1–2 years, then more after that. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Risk of IBD getting worse if you stop you meds = 80%. Your biggest risk comes from not treating your disease. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Each IBD med has its own risks, but important to understand those risks and how likely/unlikely those risks are to occur. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
“We are looking to change the long term course of chronic diseases.” — Dr Hanauer. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
One of 2 things has to happen before an IBD cure: 1) Figure out the cause(s), or 2) Some researcher gets serendipitously lucky #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
We do not know of any food or ingredient that makes IBD worse. We do know specific foods/ingredients make symptoms worse. #CCFA #crohns

“Complementary and Alternative Medications in IBD. Do They Work? Are They Safe?” — Eugene Yen, MD, NorthShore University Health System (11:45–12:10 PM)

Presentation (PDF Format)

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Dr Eugene Yen now talking on complimentary and alternative meds/therapies in IBD. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
More $$ spent on alternate medicines every year than on physician visits. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
It is not true that there is no data behind alternative therapies. But little data behind safety and possible interactions. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Randomized control studies are the most trustworthy regarding whether a med/therapy has a positive effect. Anecdotes are least. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Why might some alternative therapies work in IBD? Effect the immune system, antibacterial effects, act as antioxidants... #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Big alternative therapy for IBD: sleep! Lack of quality sleep has all sorts of negative impacts on IBD and immune system. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Acupuncture another therapy for IBD, but mixed/inconclusive research thus far. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Fish oil initially looked promising, but randomized studies show little impact on preventing flares...far better meds for IBD. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Boswellua serrata (tree sap, used mainly in Europe) when tested in a randomized trial actually made #crohns slightly worse. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
What about treating IBD w/ probiotics? Several theories for why probiotics should work. But NOT ALL probiotics are the same. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
VSL3 probiotics — based on studies — seem to reduce flares. Generally safe, but still need to be careful and talk w/ your doctor. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Circumin currently being tested. Initial studies indicate a significant effect on reducing flares. More results coming soon. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Stress is important with regard to making IBD symptoms worse, but not an actual disease cause. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Studies show that depression & anxiety levels do NOT correlate with IBD activity — depression & anxiety don’t make IBD worse. #CCFA #crohns

“Being Your Best Advocate: Advice for the IBD Patient and Their Family Regarding Insurance Coverage, Disability and Helping Your Doctor Help You” — Jennifer C. Jaff, Esq., Advocacy for Patients with Chronic Illness, Inc. (12:10–12:35 PM)

Presentation (PDF Format)

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Jennifer Jaff (only US lawyer in chronic disability law) discussing #crohns and insurance coverage, disability and patient advocacy. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Is my disease a disability? If you’re unable to perform the responsibilities of your (or in some cases, any) occupation, perhaps... #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
You cannot both work and apply for Social Security Disability. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
The Americans w/ Disabilities Act (ADA) applies to those who are substantially impaired in the performance of a major life activity. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
It’s legal to negotiate for accommodations due to health limitations. (Employer can’t simply deny — must negotiate.) #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Starting in 2014 under health care reform, IBD patients will finally be considered “equal” in the eyes of insurers. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
If your insurer says “no”, appeal! Between 60–80% of appeals are granted. Figure out the reason for the denial, then reply. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Never just call when appealing an insurance decision — you need to provide additional info (medical records, Dr’s notes, etc.) #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Don’t miss the deadline for an insurance appeal. Then you’re out of luck. #CCFA #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Help w/ disability filings, insurance appeals, IBD employer issues...“Advocacy for Patients w/ Chronic Illness” = nonprofit that helps #CCFA

“Your Questions Answered. An Interactive Session Where the Moderators Address Questions about IBD and the Day’s Conference” — Eugene Yen, MD, NorthShore University Health System & Garth Swanson, MD, MS Rush University Medical Center (12:35–1:00 PM)

No Presentation Available

Tweets:

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Now have a Q&A session with several of the speakers from today’s #CCFA conference in Illinois. #crohns

21 Apr 2012 Kevin A. Barnes @KevinABarnes
A large part if the world has trouble digesting the sugar in cow’s milk, but an inability to diagnose the protein part is very rare. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
It is true that pharma studies that don’t show good results are indeed less likely to be published. #CCFA

21 Apr 2012 Kevin A. Barnes @KevinABarnes
Thanks to #CCFA for a great Patient Education Conference in Illinois today! Lots of good information about #crohns and ulcerative colitis.

Thank you also to all of my fellow Crohn’s and ulcerative colitis Tweeps who followed and retweeted information during the conference!

  1. Saturday, April 21, 2012 []

About the author

I am a writer, marketing practitioner and astronomer-in-training. My interests include science, technology and the future of just about everything. You can learn more from my Bio page.