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This Week in Crohn’s: October 5, 2012
This week’s Crohn’s update ranges in topics from a new state-of-the-art IBD program at UCLA to IBDating with a side of Medical Marijuana for good measure.
Have You Ever Heard the One About the Spoon Theory?
I first read the Spoon Theory a while back and it struck a chord. Recently I came across it again posted by its author on her site ButYouDontLookSick.com (a site devoted to those with chronic and invisible illnesses) and for anyone living with Crohn’s disease and/or other chronic conditions the Spoon Theory is the best lesson you can teach someone trying to understand how you feel on the inside when you may for all intents and purposes look okay on the outside. Read it, you won’t be sorry!
Amy Brenneman From Private Practice and Judging Amy Fame Goes on The View and Talks About Her Career, IBD, Her Colectomy and J-Pouch, and Raising Awareness for the CCFA
Brenneman’s last appearance on The View before this past one was where she announced that she has UC. During the most recent visit with the ladies of The View, Whoopi asks Brenneman how her UC is and that opens the dialogue up to discuss IBD, surgery and the Crohn’s & Colitis Foundation of America.
Having a Hard Time Connecting With Others Because of Your IBD? Look No Further, IBDating Has Arrived.
Quite some months ago, the young lady behind the Facebook Page Inflammed & Untamed (or you may know her by her Blog agirlwithguts.tumblr.com) asked the following question on her page and Blog, “Would any of you be interested in a site that connects people with IBD?” She didn’t think she’d get a big response. But hey, we’re all wrong sometimes. Since the overwhelming responses of YES came rolling in, Sara along with a partner in crime Marisa created the IBDating page on Facebook. This will be a place for people in the IBD community to make connections for friendship, dating or what have you. No judgment! As always a word of caution to all participants — be careful how and to whom you give your information out to.
UCLA Opens the Door (on the Web and Facebook) to Its Center for Inflammatory Bowel Diseases
A couple of weeks back we reported on UCLA’s iPad program for IBD patients. At the time, the program was in its infancy and was helping doctors and GI nurses manage patient care without having them come into the office for every little thing; medication or dosing could be adjusted just from a few answers made through the iPad’s App. Now, the program is open and ready for the public and it’s quite amazing. The website Center for Inflammatory Bowel Diseases walks you through its programs (care, research and education) as well as their approach to your treatment. They also have a Facebook Fan Page. Their goal, to let patients be in control of their lives once again and no longer be a slave to their disease.
Attention IBD and Ostomy Charities (This Includes Teams and Individual Fundraisers Too!) the Folks at The Great Bowel Movement Have an Offer You Can’t Refuse
Here’s a note from Megan, one of the founders of The Great Bowel Movement.
“We're letting people nominate some IBD charities that will win a donation of 10% of our apparel sales, now through December. We would love to see the money go to someone who's really helping people out in the IBD/Ostomy communities... we also allow Take Steps and other individual fundraisers to be included. It's a great opportunity for people with smaller, lesser known endeavors also to get some exposure.”
Here’s How It Works
There will be a dedicated Facebook album where TGBM places a photo of the competing teams’ logos representing their organizations. There will be an accompanying short blurb with each logo. The image with the most Likes wins.
“We don't do anything like FB apps, we don't even make you like our
page (we figure if you think we're cool, you'll like our page) so it's super
simple. If you know of any good ones or someone that could use a boost of
exposure, let us know!”
To learn more about the contest, visit: http://thegreatbowelmovement.org/blog/?p=72.
On Oct.1, 2012 Medical Marijuana Becomes Legal for IBD Patients and Others Suffering From Chronic Conditions in Connecticut
This past June, the Governor of Connecticut, Dan Malloy (D.), signed Public Act 12-55 into law. Connecticut is now the 17th state that allows physician-approved marijuana for qualified patients such as those with Crohn’s disease. It’s important to note that even though the law takes effect right now, that Connecticut’s Department of Consumer Protection has until July 1 of next year to put together and submit regulations to manage approved growers and sellers. At this point in time it is still illegal for patients to possess pot. So for now, consider it progress in the right direction. To learn more about the Connecticut program and what the Department of Consumer Protection is working on, visit: http://www.ct.gov/dcp/cwp/view.asp?a=4287&q=503670&dcpNav=|.
New Diagnostic Test Proves to Have Higher Rate of Accuracy in Diagnosing Crohn’s and UC and Helping Physicians Diagnose Patients With Former Indeterminate Diagnoses
According to gastronews.com a study partly sponsored by Prometheus Labs is showing greater promise than the current test in use. This new diagnostic test incorporates 17 serologic, genetic and inflammatory markers associated with IBD. The test is proving to be 87% accurate for IBD detection, and is 93% accurate in differentiating UC from Crohn’s.
Prometheus Labs Launch a New Monitoring Test to Help Physicians Monitor Patients Using the Biological Treatment Remicade® (Infliximab)
Prometheus Anser ™ IFX is considered a new-generation monitoring test. The test measures drug and drug antibody levels of patients with IBD in one sample. For patients with IBD using Remicade®, the risk of developing immunity or antibodies to the biologic drug are at about a 50% rate. This test is aimed to help physicians identify the possible causes of a patient not responding to their infusions and make tailored decisions for the patient. More than 3,000 IBD clinical patient samples were used during the testing phase. What does this mean for infusion patients receiving Remicade? Well, doctors may be able to spot earlier down the line if a patient is not responding to treatment and why. This will also help the doctors to make the determination faster as to whether the patient should be moved to a new biologic, rather than increasing the dose.
Crohn’s & Colitis Foundation of America Honors Gulf Coast Teen as Hero
Elizabeth Schmidt, a high school junior with Crohn’s disease, is being honored by the Crohn’s & Colitis Foundation of America as the Gulf Coast and Northwest Florida Honored Hero. The honor is being bestowed upon Schmidt just prior to the Oct. 14 Take Steps Walk that will take place at the Fairhope Bay Front Park & Pier. To learn more about Elizabeth, click here.
University of Pennsylvania Researchers Might Have Cracked the Code on Immune Response Causing Inflammation
A new study led by researchers from the University of Pennsylvania has identified the critical molecules used to signal a balance in the immune system or an attack. According to one researcher, “The immune response is like driving a car.” He then likened an out of control response to that of a car with a faulty accelerator that will not let up. The researchers were able to isolate the cells that act as the brakes to the out of control car. This is an extremely interesting article in that the researchers have revisited a past theory regarding a type of molecule thought to cause inflammation, which was later disproved. Researchers were actually able to prove that the molecule can suppress inflammation aka put the brakes on the out of control car. Although these findings are early on, they are very important to the fight for stopping or at least slowing down the inflammation that causes diseases like Crohn’s, UC, asthma and lupus.
Hormone Replacement Therapy for Menopausal Women Found to Raise Risk of UC but not for Crohn’s Disease
According to a study recently published in the journal Gastroenterology, women undergoing hormone replacement therapy have been found to be at least 64% more likely to develop UC… but not Crohn’s. The study started back in 1976 and is referred to as the Nurses’ Health Study, had women who were a median age of 54 years old and were post-menopausal with no history of IBD. Study participants were interviewed every two years since. The findings point toward pathways related to estrogens might mediate the pathogenesis of UC. However, it’s important to point out that estrogen is also proposed to help modulate inflammation that can be found in the gut. UC affects the colon (large intestine) and rectum only.
Researchers in Israel Have Developed Line of Non-Invasive Medications to Reduce Inflammation
Currently, biological infusions and injections, along with steroids and other toxic medications are the only types of treatment aside from surgery used to Crohn’s and UC. A word we all need to get acquainted with is PLA2 an enzyme family that initiates the production of a large amount of pro-inflammatory mediators involved in the start and advancement of inflammatory diseases. Researchers at the Hebrew University of Jerusalem have created something far superior to NSAIDs (non-steroidal anti-inflammatory drugs), which cause a cascade of issues for folks with IBD. This new synthetic treatment is being referred to as MFAIDs the “M” standing for multi-functional. According to ScienceCodex “MFAIDs have shown excellent safety and were found efficient in treating diverse inflammatory/allergic conditions in animal models, using different ways of administration – oral, rectal, intravenous, inhaled and injected. These conditions included sepsis, inflammatory bowel diseases, asthma and central nervous system inflammation.” This is definitely another must read article!
A Book for Parents of Children Who Have IBD
Nursingtimes.net gives a fair and balanced review of a new book out for parents with children suffering from IBD titled, Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving. Although the book was written with contributions from many people, the reviewer comments that there is a nice flow to the book. She also points out from a nurse’s point of view how helpful the diagrams were. Surely those will be helpful for parents, too.
Looking for Ways to Raise Awareness for IBD, Help Raise Funds for a Cure, and Meet Others Who Go Through the Same Trials You Do? Get Involved!
Here is a list of events you can get involved with to help raise awareness, funds and endorphins:
Get Your Guts In Gear (GYGIG)
Each ride averages 70 miles a day and has 2 overnight camps. During the Ride, you will receive support from GYIG staff and an all-volunteer crew. You will also get to participate in an opening ceremony, as well as be provided with meals and route support, including fully stocked rest stops, sweep vehicles, and baggage transport between camps. In order to participate in the 2-day long ride, the requirements are an $85 registration fee and fundraising of at least $1,250. For more info you can call 1-718-875-2123 or e-mail the GYIG folks at email@example.com.
Team Challenge is the CCFA’s endurance training and fundraising challenge. Participants can run or walk 13.1 miles or train for a triathlon or cycling event while helping to find a cure for Crohn’s disease and UC. Visit the http://www.ccteamchallenge.org/ page to determine which event you’d prefer to participate in and then go from there. If you aren’t sure about forming your own team, that’s okay they can help hook you up with one. Pretty cool right?
This is another CCFA event involving walks held all over the nation. One of the great things about this event is that is usually held in the same place at the same time, every year. This means that participants can fundraise all year long; up until the very day of the walk. The CCFA provides team captains and their fellow walkers with fundraising ideas and support. So if you want to go big on your fundraising efforts you will have the help of the CCFA to guide you. To learn more about the Take Steps Walk visit their FAQ page or fill out their Request More Information Page.
Have a favorite charity that we didn't mention? Send us your suggestions at: firstname.lastname@example.org