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CCFA La Jolla Patient Education Conference

CCFA Crohns and Colitis Foundation





I attended CCFA Patient Education Conference that was held in la Jolla on Saturday, April 22, 2017. I was very impressed from beginning to end. Tiffany Jordan, their regional education and support manager, co-ordinated the event. She did an exellent job.

Not only in her selection of a convenient and comfortable location but also in her choice of a knowledgable speakers who were able to cover a wide variety of topics.

IBD is a challenging condition to deal with. Each person seems to have their own unique expression. The level of severity differs from patient to patient and therefore it’s extremely important for patients to have a good understanding of their condition.

It’s also very important for them to get an accurate diagnosis. The more information they have, the better they can cope with their condition and make rational decisions about which types of therapies they wish to select.

Elizabeth Evans MSN FNP-BC – UCSD was their first presenter. She covered IBD Treatment Options. Elizabeth is a gifted speaker. I marvelled how she was able to break down extremely complex information into layman’s terminology so that we could all understand what she was talking about. You’ll be reading more in-depth blog posts about what she spoke about in the next few weeks.

Her presentation was followed by Samuel Eisenstein MD – UCSD’s talk concerning ‘Questions to Ask Your Surgeon’. Yes, there are lots of questions that patients often forget to ask.

This was a great reminder of the important ones. Dr Eisenstein sees patients for a variety of colon and rectal problems but his specific area of interest is in Inflammatory Bowel Disease.

Alissa Speziale MD – Sharp Health Care – spoke about ‘Staying Well with IBD’. She has a very friendly, amiable presence. She’s an active reservist and warned us in advance that she may need to leave if summoned!

She’s a dedicated volunteer of CCFA and an avid supporter of the ‘Take Steps for Crohn’s & Colitis Walk‘ that takes place all over the country and this year it’ll be next month in San Diego, on May 20, 2017.

As Dr Speziale so rightly says…” Over 1.4 million American adults and children are affected by these digestive diseases. While many suffer in silence, Take Steps brings together this community in a fun and energetic atmosphere, encouraging them to make noise and be heard.” Think about participating or donating to this worthy cause.

The meeting ended with Brian Kleker, MD – Kaiser giving the audience a lot of useful information about ‘Dermatalogic Manifestations in IBD. His goal is to concentrate on providing personalized evidence-based care to his patients.

CCFA staff an volunteers are caring and dedicated to their cause. They really go to extra lengths to reach out to their community at large and provide support. I, for one, run a support group in San Diego for them. You can get information about their support groups all over the country from their website.

They also have a particular interest in teens, who often feel very embarrassed and isolated as a result of their condition. They even provide a teen guide.

What’s also impressive is that they have an Information Specialist Hot Line:
You can call speak to someone …
You can email them …
You can order informational brochures

CCFA is an organization that always needs support to further their never ending need for adequate research to end IBD related suffering. You can donate now!

What Can You Eat..When You Can’t Eat Anything?

What’s the Best Diet if you are Suffering with Crohn’s?

For many of the millions of people suffering with Crohn’s or Ulcerative Colitis this is a question that they ask themselves at every meal. Many sufferers are looking for a way to modify their diet to help reduce symptoms. Through trial and error and eliminating foods one at a time you slowly begin to figure out what works and what doesn’t work. The Crohn’s and Colitis Foundation is hoping to shed some light on the subject.

The Crohn’s and Colitis Foundation (CCFA) have implemented many new studies which will change our understanding of how diet can be altered to improve the quality life. What should you eat? Soon, we will have new treatment tools that incorporate diet modification.

One such study was launched last year by the Microbiome Initiative under CCFA. This study called FARMM, Food and Resulting Microbial Metabolites has set out to compare a Western diet, a vegan diet, and one formulated to treat Crohn’s disease in children. This research partnership between the CCFA and the Perlman School of Medicine at the University of Pennsylvania will be a powerful tool for nutritional therapy.

Volunteers in the study followed one of the randomly assigned diets for two weeks. Each individual was tracked by researchers to determine how their gut microbes were affected. “FARMM will advance our understanding of the complex relationship between our gut, and the small molecules they produce that end up circulating throughout our body,” explains Gary Wu, MD and Professor in Gastroenterology at the Perlman School of Medicine at the University of Pennsylvania. The hope is to achieve a broader view of how a specific diet works to introduce remission in patients with Crohn’s disease.

Currently there is little information on how diet affects Crohn’s Disease. Most physicians and patients are very uncertain about what dietary changes to make. CCFA hopes to have critical new information within 3-5 years that can be used to educate healthcare providers and patients on how to use diet and nutrition to improve health, reduce symptoms and prevent malnutrition.

For more information on studies and clinical trials near you visit the CCFA website. 

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